A delayed discharge case is when a patient is medically ready to leave a hospital but remains there for non-medical reasons. The delay can be caused by factors like a lack of available social care, insufficient community care packages, or issues with the hospital’s own processes. These delays are a major concern as they reduce hospital bed capacity, potentially leading to poorer patient outcomes and increased healthcare costs. 

Delayed discharges: why it’s hard to say how many are due to social care capacity

Authors

Here’s a multiple-choice quiz. What percentage of delayed discharges from hospital are caused by lack of adult social care capacity? Is it:

a) Most of them

b) 50%

c) 12%

d) There’s no way of knowing for certain.

The answer is d): we just don’t know. You get half a point if you said c) because 12% is the most we can definitely attribute to lack of social care capacity from the publicly available data. However, you’d be forgiven for thinking it was b) or even a) if you simply read the media coverage. In December, the Royal College of Nursing was quoted as saying that there was ‘barely a spare bed’ left in NHS hospitals due to a lack of capacity in social care; while in January, the NHS Confederation was reported as saying that 20% of NHS bed capacity was taken up by patients who were only there because they ‘cannot get a suitable care package’.

“Yet we don’t know the number – because, with the best of intentions, we chose to stop asking.”

Yet we don’t know the number – because, with the best of intentions, we chose to stop asking. In 2020, NHS England stopped separating out reasons for delay between health and social care. The reasoning, based on discussions with health and care organisations, was that delays were often complex, and instead of allocating them to one or other partner, systems should take responsibility, rather than individual sectors.

The most recent data recording, introduced in May 2024, requires discharge hubs (or sometimes wards) to classify the causes of delay into one of five categories:

  1. Hospital process (issues within the hospital’s control, such as medication or transport)
  2. Wellbeing concerns (issues outside the hospital’s control, for example where a family has doubts about a patient’s readiness for discharge)
  3. Care transfer hub process (most commonly where the patient’s destination has not yet been decided)
  4. Interface process (typically where transfer plans are underway but have not yet been completed)
  5. Capacity (where the service needed by the patient is not yet available).

Except for hospital process, all these categories include delays that are due to both the NHS and social care. For patients with stays of at least 14 days (the only publicly available measure), on average 9,309 people were delayed each day in March 2025. Of these, 3,203 delays were ascribed to ‘capacity’, followed by interface process (2,639), hospital process (1,754), care transfer hub process (1,200) and wellbeing concerns (514).

If we focus on those 3,203 capacity delays – because lack of social care capacity is often cited as a key cause of delayed discharges – the single largest reason (966 people delayed) is lack of ‘bed-based rehabilitation, reablement or recovery services’.

https://www.landmarkchambers.co.uk/news-and-cases/blog/health-and-social-care-law/delayed-transfer-of-care-leads-to-100k-legal-bill-for-an-icb

This covers a wide range of health and care services, some of which are commissioned by NHS trusts, some by local authorities and some jointly. Even discharge hubs would not be able to allocate them to ‘the NHS’ or ‘social care’. The same applies to ‘home-based rehabilitation, reablement or recovery services’ (502 people delayed), which again cannot be split neatly into social care or NHS.

In fact, only three of the sub-categories – lack of home-based social care services (257), lack of residential or nursing care (762), and people waiting for restart of existing social care services (63) – are solely attributable to social care. But these account for only 34% (1,082) of the 3,203 total ‘capacity’ delays and only 12% of the total 9,309 delayed patients. The real figure for social care delays will be higher because it will include some of the bed-based and home-based rehabilitation and reablement delays but is not counted.

“Yet the NHS and social care are two distinct systems, funded differently, usually commissioned differently and often with different immediate concerns.”

Author:

Into that data vacuum has emerged a range of guesses and estimates, some more authoritative than others. For example, in March NHS England told the House of Commons Health and Social Care Committee that around a fifth of bed days (note that this is a different measure to the publicly available one) lost to delayed discharge ‘are for individuals accessing adult social care packages on discharge’.

In an ideal world, it might not matter. Local systems would be working together to identify problems, avoiding blame and finding joint solutions. Perhaps most are already. Yet the NHS and social care are two distinct systems, funded differently, usually commissioned differently and often with different immediate concerns. On the NHS side, there is intense media and public concern about hospital capacity, A&E waits and ‘corridor care’. On the social care side, there is a longstanding grievance about lack of funding.

In these circumstances, it has sometimes suited both sides for lack of social care capacity to be seen as the key cause of hospital discharge delays. It allows social care to make the case for more money and deflects attention from the NHS causes of delay. This is why the headlines are tolerated, sometimes encouraged.

“It allows social care to make the case for more money and deflects attention from the NHS causes of delay. This is why the headlines are tolerated, sometimes encouraged. ”

Author:

Yet it can still rankle within social care if it is held largely responsible for a problem to which it is, in fact, only a minority contributor. There is a long and inglorious tradition of blaming social care for hospital discharge delays.

There is also irritation about the word ‘capacity’: there is plenty of capacity in care homes, says the sector (occupancy has still not quite returned to pre-pandemic level); the issue is that commissioners (in both the NHS and local authorities) are not sufficiently well organised and are unable or unwilling to pay a fair price for it.

In this difficult environment, avoiding a blame game on hospital discharge was always going to be ambitious. It’s proved to be that – and more. Time to accept reality and publish a credible official estimate of the respective responsibilities for delayed discharge of health and social care.

Further reading

Email: jchr@parliament.uk

Phone: 0207 219 2793 (general enquiries) | 020 7219 8430 (media enquiries) 

Address: Joint Committee on Human Rights, Houses of Parliament. London. SW1A 0AA

Key Reports

1. House of Lords Select Committee on the Mental Capacity Act 2005 — “The Mental Capacity Act 2005: Post‑legislative scrutiny” (March 2014)

Summary & main criticisms:

Found that the Mental Capacity Act 2005 (MCA) “has not been widely implemented” and that persons lacking capacity are being let down. Hansard+2Parliament News+2

Criticised DoLS as being “not fit for purpose”. They described DoLS as “poorly drafted, overly complex and bear[ing] no relationship to the language and ethos of the MCA”. Parliament News+2Parliament News+2

Concluded that “thousands, if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law” because DoLS were not being properly implemented. Parliament News+1

Recommended that DoLS be replaced by legislation “in keeping with the language and ethos of the MCA as a whole”. Parliament News+1

Also recommended the establishment of an independent oversight body for the MCA. UK Parliament Committees+1

Why it matters: This was one of the first major parliamentary reviews to lay bare systemic shortcomings in DoLS — both in design and implementation. Its recommendations partly led to the development of the Mental Capacity (Amendment) Act 2019 (which introduces the Liberty Protection Safeguards, LPS) and wider reform. Parliament News+1

Joint Committee on Human Rights rds”* (July 2018)

Summary & main criticisms:

Focuses specifically on DoLS and their human rights implications under Article 5 (right to liberty) of the European Convention on Human Rights (ECHR). Parliament Publications+1

Highlights that the DoLS scheme is failing to protect rights because of delays, backlogs and insufficient legal challenge routes. For example:

“Every person who is deprived of their liberty without the completion of an application within statutory time‑frames is unlawfully deprived of their liberty.” UK Parliament Committees+1

Points to official statistics showing only ~19–24% of standard DoLS applications were completed within the statutory 21‑day timeframe. UK Parliament Committees+1

Called on the Government to ensure proper compliance and to implement alternative arrangements while LPS reforms were being rolled out. Parliament Publications

Why it matters: This report emphasises the rights dimension of DoLS failures — not just process or resource issues, but fundamental human rights (liberty, security) being put at risk for vulnerable adults lacking capacity.

Care Quality Commission (CQC) — “State of Care: Deprivation of Liberty Safeguards (DoLS)” (2022/23 & 2023/24 editions)

Summary & main criticisms:

The 2022/23 edition: reports that over 300,000 DoLS applications were made, but only 19% of standard applications were completed within the statutory 21‑day timeframe. Care Quality Commission

The 2023/24 edition: states “Too many people are waiting too long … we are concerned about the rights of people at the heart of the DoLS system. … The system has needed reform for over 10 years.” Care Quality Commission

Points out that delays, backlogs and variable knowledge among staff leave many without legal protection while deprived of liberty. Care Quality Commission+1

Why it matters: These are key regulatory oversight reports showing the ongoing, systemic nature of the problems with DoLS — despite earlier warnings and reviews. They provide strong up‑to‑date empirical evidence of the failure to meet statutory requirements and protect rights.

Summary Table

ReportYearMain Criticisms of DoLSKey Outcome / Recommendation
House of Lords Select Committee (MCA)2014DoLS not fit for purpose; large numbers deprived of liberty without legal protection. Parliament News+2Parliament News+2Replace DoLS with new legislation; independent oversight body. Parliament News
Joint Committee on Human Rights2018Rights breaches: major delays, backlog, non‑compliance, vulnerable people affected. Parliament Publications+1Government must ensure compliance; expedite reform to LPS.
CQC – State of Care (DoLS)2022/23 & 2023/24Ongoing systemic problems: backlog, delays, many without legal protection while deprived of liberty. Care Quality Commission+1Need for substantial intervention; rollout of LPS delayed but essential.

Additional Context & Reform Trajectory

The Supreme Court’s decision in Cheshire West & Chester Council v P & Q (2014) expanded the definition of deprivation of liberty. This caused a large rise in DoLS applications and increased pressure on the system.

In response, the Law Commission reviewed DoLS and proposed the replacement scheme: the Liberty Protection Safeguards (LPS). BASW+1

The Mental Capacity (Amendment) Act 2019 was passed to introduce LPS. However, as the CQC reports note, implementation of LPS has been delayed, which means DoLS remain in force and their defects continue to impact people.

The Mental Capacity Act is failing, says Lords 

Vulnerable adults are being failed by the Act designed to protect and empower them. Social workers, healthcare professionals and others involved in the care of vulnerable adults are not aware of the Mental Capacity Act, and are failing to implement it. That is the key finding of the House of Lords Committee established to scrutinise how the Act is working in practice, as outlined in its report published today. 

The Committee is recommending that an independent body is given responsibility for oversight of the Act in order to drive forward vital changes in practice. The Committee also found that the controversial Deprivation of Liberty Safeguards (DoLS), inserted into the Mental Capacity Act in 2007 by the Mental Health Act, are not fit for purpose. The Committee is recommending that the DoLS be replaced with legislation that is in keeping with the language and ethos of the Mental Capacity Act as a whole. 

Chairman of the Committee, Lord Hardie, said: 

“When the Act came into being, it was seen as a visionary piece of legislation, which marked a turning point in the rights of vulnerable people; those with learning difficulties, dementia, brain injuries or temporary impairment. The Committee is unanimous that this is important legislation, with the potential to transform lives.

“However, what is clear from the substantial volume of evidence we have received is that the Act is not working at all well. That is because people do not know about the Act, or do not understand it, even though many professionals have legal obligations under it. Those who may lack capacity have legal rights under the Act, but they are not being fulfilled.  In many cases complying with the Act is treated like an optional add-on – nice to have, but not essential. In short, the Act is not being implemented.

“The Committee believes that the Act is good and it needs to be implemented. What we want to see is a change in attitudes and practice across the health and social care sector which reflects the empowering ethos of Act. To achieve this we recommend that overall responsibility for the Act be given to an independent body whose task will be to oversee, monitor and drive forward implementation. At present there are many bodies involved in implementing the Act, but there is no single organisation which is in charge. And the effect of that can be seen in the Act’s patchy implementation. Ministers would still be ultimately responsible for the Act, but placing an independent body in charge would provide a focus for activity to raise awareness and improve practice.

“Our other key finding concerns the Deprivation of Liberty Safeguards. The intention of the safeguards is to provide legal protection for people who are being deprived of their liberty for their own safety. For example, someone with dementia may be prevented from leaving a care home alone because they are at risk of getting lost. The safeguards are there to ensure that such restrictions are not placed on people without good reason, and without considering less restrictive options first. It also provides a means to challenge such arrangements. 

“We were very concerned by what we heard about the safeguards. The evidence suggests that tens of thousands of people are being deprived of their liberty without the protection of the law, and without the protection that Parliament intended. Worse still, in some cases the safeguards are being wilfully used to oppress individuals and to force decisions upon them, regardless of what actions may be in their best interests.

“The criticism of the safeguards extended to the legislative provisions themselves; we were told the provisions were poorly drafted, overly complex and bureaucratic. A senior judge described the experience of trying to write a judgment on the safeguards as feeling “as if you have been in a washing machine and spin dryer”. Even if implementation could be improved, the legislation itself is flawed.

“In the face of such criticism, the only option is to start again. The Government needs to go back to the drawing board to draft replacement provisions that are easy to understand and implement, and in keeping with the style and ethos of the Mental Capacity Act.”

The Committee further recommends that:

  •  Government works with regulators and professional bodies to ensure the Act is given a higher profile in training, standard setting and inspections;
  • Government increases the staff resources at the Court of Protection to speed up handling of non-controversial cases;
  • Government reconsiders the provision of non-means tested legal aid to those who lack capacity, especially in cases of deprivation of liberty;
  • Local Authorities use their discretionary powers to appoint Independent Mental Capacity Advocates more widely than is currently the case; 
  • Government addresses the poor levels of awareness and understanding of Lasting Powers of Attorney and advance decisions to refuse treatment among professionals in the health and social care sectors;
  • Government review the criminal law provision for ill-treatment or neglect of a person lacking capacity to ensure that it is fit for purpose.

The Committee also recommends that the House of Lords seek an update from the Government twelve months from now to find out what they have done in response to their key recommendations.

You can watch a YouTube video of Lord Hardie giving an overview of the Committee’s report by following the link.

Deprivation of Liberty Safeguards (DoLS)

Key findings

  • Too many people are waiting too long for a Deprivation of Liberty Safeguards (DoLS) authorisation, despite multiple examples of local authorities trying their best to reduce backlogs and ensure sustainable improvement.
  • We remain worried about the rights of people at the heart of the DoLS system. We continue to see people in vulnerable circumstances without legal protection, which not only affects them but also their families, carers, staff and local authorities.
  • The system has needed reform for over 10 years. Unless there is substantial intervention, we are concerned that these challenges will continue.

The Deprivation of Liberty Safeguards (DoLS) were introduced under the Mental Capacity Act (MCA) 2005. The safeguards were designed to protect the human rights of people aged 18 or over if they do not have the mental capacity to consent to their care arrangements and they need to be deprived of their liberty. The safeguards apply in care homes and hospitals.

If a person is deprived of their liberty, they are not free to leave the premises on a permanent basis, for example to live where and with whom they choose to, and they are subject to continuous supervision and control. This means they are monitored or supervised for significant periods of the day and they are not allowed to make important decisions about their own life. The safeguards are vital in ensuring that such deprivation of liberty only happens when it is necessary, proportionate and in the person’s best interests.

Concerns have been raised about the effectiveness of the DoLS system for over 10 years. In 2014, the House of Lords MCA post-legislative scrutiny report warned of the lack of understanding and poor implementation of the safeguards, which meant that, “thousands, if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law.”

In successive State of Care reports, we have raised strong concerns about the operation of DoLS, including delays in processing applications and the variable knowledge of staff about the safeguards. Across both health and social care services, we continue to find that many of the issues outlined in the House of Lords report are still relevant 10 years on and have been exacerbated by the stark increase in the volume of applications, bringing new challenges for the DoLS system.

DoLS were due to be replaced by the Liberty Protection Safeguards (LPS). These would have addressed the main limitations of the DoLS system, such as:

  • streamlining processes
  • extending the scheme to cover 16 and 17-year-olds
  • giving families greater involvement
  • applying the safeguards to additional settings, including people’s homes and supported living services
  • crucially, giving responsibility for issuing authorisations to NHS trusts and integrated care boards, along with local authorities, to reduce the strain on the system.

However, in April 2023, the government announced that the implementation of LPS would be delayed “beyond the life of this parliament”. At present, it is unclear when or if the LPS reforms will be implemented. We are keen to establish a dialogue with the new government about this.

Within a system struggling to cope, in 2023/24 we continued to see people in vulnerable circumstances being left without legal protection with their rights affected. This not only affects people using services but also their families, carers, staff and local authorities.

The chronic backlogs

Ten years ago, a landmark Supreme Court judgement, known as ‘Cheshire West’, clarified and broadened the definition of what constitutes a deprivation of liberty. Since then, applications to deprive a person of their liberty have continued to increase far beyond the levels expected when the safeguards were designed.

This has culminated in local authorities facing unprecedented volumes of DoLS applications, and in many cases, continuing backlogs to process them, as we have reported in previous State of Care reports. In 2023/24, applications to deprive a person of their liberty increased to just over 330,000, an 11% increase compared with the previous year.

The delays in implementing LPS mean that local authorities are still the only organisations able to give a standard DoLS authorisation. To do this, local authorities have 21 days in which to assess whether the deprivation of liberty is appropriate. But in 2023/24, only 19% of standard applications were completed within the statutory timeframe. In recent years, backlogs for processing applications have remained high, with figures showing 123,790 people were waiting for an authorisation as at March 2024.

Applications to deprive a person of their liberty must be authorised by a ‘supervisory body’. In England, the role of a ‘supervisory body’ is undertaken by local authorities, who are responsible for arranging assessments to make sure that a deprivation of liberty is only authorised if certain requirements are met. Standard authorisations can last for up to a year. If a person urgently needs to be deprived of their liberty before they have had a full assessment, providers can grant themselves an urgent DoLS authorisation. These can last up to 7 days and can be extended for a further 7 days if necessary.

We found a wide variation in how local authorities were managing applications in 2023/24. It was clear that some were struggling to process applications promptly enough, and yet one local authority had no backlogs. We continue to hear from our external stakeholders that the DoLS system is “not working” and there is “no movement once the application has been submitted.”

Some local authorities had high numbers of applications waiting to be reviewed, which meant some people had been waiting for an assessment for over a year. We are particularly worried about people’s human rights in these cases, as assessments may highlight that their care is more restrictive than it needs to be. When local authorities can carry out assessments, we have seen how this can identify unnecessary restrictions so that DoLS conditions can be used to mandate that care arrangements are the least restrictive possible.

Variation in backlogs between different local authorities means people in similar situations may have different experiences of the DoLS system because of where they live. Many factors contribute to this variation, including budget allocation, the make-up of local populations, and the number of hospitals and care homes in an area.

Local authority backlogs also have a knock-on impact on hospital and care home staff: while waiting for DoLS applications to be reviewed, they have to balance keeping people safe with protecting their rights. Our inspectors told us about staff feeling stressed and confused trying to navigate the DoLS system when waiting for an authorisation. Worryingly, our inspections and assessments have also highlighted instances where backlogs in processing existing applications mean some care providers have stopped submitting new applications. This means people have restrictions placed on them without an application or any legal safeguards.

Providers must formally notify CQC without delay when they know the outcome of an application for a deprivation of liberty, whether it was made to the Court of Protection or under DoLS. This includes both when an authorisation has not been granted or the application has been withdrawn.

In 2023/24, we received around 161,000 DoLS notifications, a 23% increase from the previous year. Recent changes in data reporting have highlighted some discrepancies between the data collected by local authorities and data we hold on notifications from providers, and we are taking steps to understand the reasons for this.

Behind the backlogs

To better understand the pressure on local authorities, this year we surveyed representatives from the National DoLS Leads Network and heard the views of over 50 respondents from supervisory bodies across England. We heard widespread concern from the local authorities that they are often significantly under-resourced to process increasing volumes of DoLS applications, as their funding has not increased in line with the number of people requiring assessments. One local authority told us:

DoLS is a broken system. It was designed for a pre-Cheshire West time with relatively few applications. It is impossible to make it work with the resources we have, leading to a big backlog…The situation is so bad that, if we just stopped getting any applications and just assessed people from the backlog, we would be doing this for around 18 months just to clear it.

Insufficient staffing levels were also identified as a primary barrier to performance. Many supervisory bodies are struggling to recruit enough assessors, with some local authorities relying significantly on independent assessors to manage the volume of applications. Some respondents noted high staff turnover within DoLS teams, describing working in this area as a “marmite experience” where members of staff either thrive, or more often, leave the service.

Amid these challenging circumstances, a member of our external stakeholder group described local authorities going “above and beyond to create systems that are as safe as possible.” NHS England data shows that the number of applications completed by local authorities has increased over the last 5 years by an average of 9% each year. But while DoLS backlogs decreased by 2% in 2023/24, the number of people waiting for an authorisation remains significant. In our assessments of local authorities, we have seen multiple examples of supervisory bodies trying their best to reduce backlogs and ensure sustainable improvement. For example, many local authorities adopt risk-based approaches and tools to prioritise applications. We also saw local authorities recruiting and training more best interests assessors.

Respondents to our National DoLS Leads Network survey frequently cited the ADASS screening tool as a way of helping local authorities to prioritise applications, by categorising them as either high, medium or low priority. However, this method relies on detailed, accurate DoLS applications. We heard that many local authorities are not always confident that the information services provide on DoLS applications is correct. This increases the risk that people who urgently require an assessment are not being appropriately prioritised. Although tools can help local authorities to identify those in need of urgent attention, the statutory 21-day timeframe applies to all standard DoLS applications and the need to prioritise may be another symptom of a broken DoLS system.

We are also concerned that the use of prioritisation tools may result in some groups of people, such as people with a learning disability or living with dementia, being disproportionately affected by delays in processing DoLS applications. A respondent from the National DoLS Leads Network noted that while these people usually meet the requirements for DoLS, they often do not meet the prioritisation criteria and may be “overlooked”. We also heard from a member of our external stakeholder group about some assessments being carried out virtually. While this may offer greater flexibility, virtual assessments are not always suitable for the people who are being assessed. A member of our external stakeholder group reflected that differences in the way local authorities approach DoLS makes it difficult to support managers of care homes spread across different counties.

Local authorities told us that ongoing issues with the level of understanding of the safeguards among health and social care staff can exacerbate the backlogs. We heard that applications from care homes and acute hospitals are not always appropriate, and we have also seen evidence of this, with some staff unclear on the circumstances that require a DoLS authorisation. This risks people who need the safeguards getting lost in the high volume of referrals, or not having an application made when they need one. Local authorities found that the quality of mental capacity assessments made by providers before they submit an application was sometimes poor, which can also result in unnecessary applications. It also means that they may need to contact providers to get information that should have been included in the application, thereby delaying the process and requiring additional resources from all parties.

Another factor that has a negative impact on the backlogs is a lack of communication between providers and local authorities. When providers apply promptly for DoLS renewals, it can help reduce workloads for supervisory bodies. Yet, we heard this does not always happen in practice. In addition, local authorities are not always informed of important changes following submissions, such as a person dying, being discharged, admitted to hospital or their condition changing. These people therefore remain on the waiting list for DoLS when they may no longer need to be. In other circumstances, providers may also not communicate important changes such as objections or increased restrictions, preventing local authorities from giving priority to some assessments that need it.

Limited understanding of the Mental Capacity Act and DoLS

The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.

Any action taken as part of the DoLS process must be in line with the principles of the Act. While providers often demonstrate an awareness of the MCA and its principles, many managers and staff still lack confidence in applying them in their work. This is reflected in care records, mental capacity assessments and best interests decisions. We found that some care records did not show how best interests decisions were made and how the appropriate people were involved.

A key principle of the MCA is that people should be cared for in a way that least restricts their rights and freedoms. This principle shines through every aspect of the Act, including DoLS. For example, we saw services routinely reviewing restrictions to check if they remain the least restrictive option, rather than assuming the restrictions continue to be necessary simply because a DoLS authorisation was granted. However, providers continue to have a mixed understanding of DoLS. Some struggle to understand when the safeguards apply and we also saw examples of DoLS applications from providers that:

  • did not include capacity assessments
  • did not specify what and why specific restrictions were needed
  • failed to acknowledge less obvious restrictions that were already being implemented, such as sensor movement trackers or bed rails.

Worryingly, we also heard of a misconception among some providers that a DoLS application equated to an authorisation being in place.

We saw how, in a few services, a lack of person-centred planning and staffing issues meant there were blanket restrictions – depriving all residents of their liberty despite not being necessary for everyone. One local authority also mentioned that some services are still influenced by a “protection imperative” when caring for older people. In their experience, older adults are more likely to have more restrictive care plans in place, as some providers feel a need to reduce risks to the person regardless of their capacity to make specific decisions.

If people lack capacity to make one decision, it is vital that staff do not assume they lack capacity to make all decisions. Yet, we have seen examples of this happening in some services, which could lead to unnecessary restrictions and is not in line with the Act.

Care plans, mental capacity assessments and DoLS authorisations should be reviewed regularly to ensure they remain appropriate. In our last State of Care report, we highlighted that restrictions were not always reviewed often enough, meaning providers may have missed opportunities to reduce them. This may also be a warning sign of a closed culture. When services stop recognising and reviewing restrictions, they risk becoming part of the culture, passed on and accepted by new employees.

Application of the safeguards

In some services for autistic people and people with a learning disability, we have seen DoLS assessments and authorisations that do not consistently show that the least restrictive option has been considered. DoLS authorisations in these services can also lack information on how people’s emotional and physical wellbeing is protected when they are subjected to restrictive practices such as seclusion and restraint. We have previously raised concerns that poor understanding of the MCA and issues with the management of DoLS are contributing to the overuse of restrictive practices and our policy position is clear that the restrictive practices are only appropriate in limited, legally justified, and ethically sound circumstances in line with people’s human rights.

Our assessments highlighted some differences between hospitals and care homes in the way DoLS are applied. Because the length of stay in an acute hospital tends to be shorter than in a care home, DoLS backlogs mean often patients are not assessed before they are discharged or moved elsewhere. This means that people at the heart of the process may not practically benefit from the protection afforded by the safeguards for most of their hospital stay, despite the work and resources used by providers and local authorities to follow the process in line with the law.

Where a person has a DoLS authorisation in place during a hospital stay, we have seen the positive effects of this on their care. For example, in one case the authorisation meant staff were more aware of the patient’s needs, which was evident in care records. By better understanding the patient and tailoring their care, staff were able to prevent escalations.

However, we also identified a lack of communication about DoLS at some acute hospitals, which affected numerous patients on the ward. For example, we found that people sharing a ward with someone subject to a DoLS authorisation did not always know that certain restrictions, like not being able to open locked doors, only applied to one person. In mental health inpatient settings, we continue to see different interpretations of the interface between the Mental Health Act and the Mental Capacity Act, with the safeguards being used more frequently in wards for older adults.

Although staff should be familiar with the conditions for a DoLS authorisation, this is not always the case. We identified limited oversight of DoLS at some services and we are concerned that the safeguards are viewed as a ‘management issue’ rather than something every team member needs to engage with to protect people’s human rights. A local authority also told us that frequent staff and management changes in care homes represents a challenge, as local authorities do not have the resources to regularly undertake in-depth work with providers to improve their understanding and application of DoLS.

While there is a clear need for further training, we found examples of a lack of training on DoLS in anticipation of the introduction of the Liberty Protection Safeguards. A member of our external stakeholder group explained that providers had invested energy preparing for LPS and some were finding it difficult to adjust to uncertainty around its implementation at such a late stage. However, it is vitally important that services ensure staff have adequate knowledge of DoLS to protect people’s human rights – both now and in the future.

New registrations and the Mental Capacity Act

Concerns around providers’ knowledge of DoLS and the MCA are mirrored in an analysis of our regulatory enforcement data on Notices of Proposal. At the point of registration, we expect all providers to demonstrate a clear understanding of the MCA and, when applicable, DoLS. As the regulator, we will serve a Notice of Proposal to impose conditions on a new provider or refuse registration if they cannot demonstrate this. We analysed a sample of 139 Notices of Proposal issued in 2023/24 to new adult social care providers and managers applying to register with CQC. This found that almost half the Notices (66) were based on a lack of compliance with standards outlined in the Mental Capacity Act (MCA). In many cases, applicants also failed to demonstrate compliance with other regulations.

Of the Notices of Proposal relating to the MCA, nearly all were refused applications because the applicant lacked vital knowledge in this area. For example, one applicant could not demonstrate that they understood how and when to use restraint. We were concerned that another applicant had a poor understanding of mental capacity, which presented a risk that consent may be gained from a person who is not legally able to give it.

Some Notices of Proposal were issued because applicants could not provide evidence that they would implement the principles of the MCA effectively. One applicant was aware that a representative with appropriate power of attorney was able to provide legal consent, but for people without a power of attorney, there was nothing else in place to ensure that people would benefit from the rights and safeguards afforded by the MCA. It is key that services and managers applying to register with CQC, and their staff, are aware of their responsibilities under the Act, to respect people’s rights in line with both the MCA and Health and Social Care Act regulations.

People’s experience and involvement

DoLS are essential human rights safeguards that were designed to protect people in vulnerable circumstances. Multiple members of our external stakeholder group told us about waiting years for responses to some DoLS applications. This leaves people without legal protection, and some do not have accessible routes to challenge their deprivation of liberty. In some cases, people are receiving overly restrictive care that is not aligned with their needs and does not respect their autonomy. Our updated human rights approach makes clear that care that does not respect and promote human rights is neither safe nor high quality.

Our last State of Care report highlighted how a lack of communication around DoLS authorisations can affect people and their friends and families. It is important that people subject to a DoLS authorisation, their families, and carers have the information they need to understand the process and allow them to advocate effectively. One member of our external stakeholder group felt care settings are getting better at explaining the safeguards and people’s rights, which they linked to the presence of best interests assessors being a “valuable education component”.

However, we remain concerned about issues with communication. Many respondents to the National DoLS Leads Network survey noted confusion and upset among family members who are often unaware that a DoLS application has been made until being contacted by an assessor. Our external stakeholder group echoed this, with many sharing experiences of people and families who felt excluded or unheard. One care home provider explained that relatives of residents who had been determined to lack capacity by a hospital have often not been informed about DoLS, and are surprised when care home staff explain the Mental Capacity Act and DoLS process to them. Another member of the group highlighted that the DoLS process can be very confusing for patients and families, stressing the need for time, patience and a point of call for any questions.

We are particularly concerned about communication around DoLS for people who do not speak English as a first language or who use alternative ways of communicating. For example, we found that some acute hospitals were limited in being able to communicate with patients with a DoLS authorisation in any way other than verbally. Whereas using an alternative form of communication such as Makaton may have helped some patients to understand what was happening to them. Our external stakeholder group spoke of concerns around language barriers and inadequate interpretation services, which caused distress to people using services and their family members. One stakeholder felt these issues can be compounded by poor cultural competency among staff, which can lead to poorer care, less effective interventions, and reduced engagement with services.

Several local authorities felt that more challenges to DoLS authorisations have been brought to the Court of Protection in recent years. When a DoLS authorisation is in place, people have a right to have these arrangements reviewed by a court. It is positive that people are aware of their rights to challenge a deprivation of liberty and are supported to do so. However, a local authority also told us that this can be a time-consuming process, which has a further impact on their resources.

Earlier in this report, we raised concerns about older teenagers who may fall through the gaps when accessing mental health services. Similar concerns about the quality of transitions from children to adult services have emerged through our DoLS survey, with one local authority noting that a ‘start again syndrome’ may happen when a young person enters adult services. They said the information provided by children’s services is often insufficient for planning a DoLS application, which can lead to delays in the DoLS process when the person turns 18. At present, the Court of Protection is also responsible for authorising a deprivation of liberty for young people aged 16 and 17 who lack mental capacity, as DoLS only applies to adults. We heard some frustration from local authorities about delays in LPS implementation, as the new scheme would have helped to speed up authorisations for these young people. Like the DoLS process for adults, we have heard that there continue to be delays associated with the Court of Protection authorisation process.

Protecting people in the future

The DoLS system has needed reform for over 10 years. Unless there is substantial intervention, we are concerned that these challenges will continue, leaving people at the heart of this process without the key human rights safeguards that the DoLS system was intended to offer.

In 2023/24, approximately half of the total number of DoLS applications completed were closed without any assessments happening. This means that, in many cases, the DoLS application process may not bring increased safeguards for people’s human rights, despite the efforts and resources used by care homes and hospitals to submit applications, and local authorities’ work to process and triage these.

With the volume of applications continuing to increase, the current system means that local authorities remain the only organisations able to process them, and many have told us they do not have sufficient resources to cope with the demand. Supervisory bodies told us that increased funding, an updated Code of Practice, better training and regulatory oversight are all factors which could help to improve outcomes for people while we wait for the LPS to be implemented.

While we heard that DoLS remains an “overly bureaucratic system”, local authorities across England have also implemented some improvements to help existing processes run more smoothly. These include:

  • making assessments proportionate and using equivalent assessments when appropriate
  • streamlining administrative processes, using IT systems and updating forms
  • developing strong working relationships between local authorities and providers to improve communication, especially when circumstances change or when a renewal is due
  • workshops and training for providers to reduce the number of inappropriate applications they receive and improve the accuracy of applications.

Despite these efforts, we remain concerned that the number of people requiring the legal protection afforded by DoLS continues to increase and the system is unable to cope with this demand. Ongoing issues with the DoLS system will disproportionally affect certain groups, such as disabled people and older people, who are more likely to need the safeguards. A recent report by Age UK highlighted that in 2022/23, 84% of DoLS applications were made for people aged 65 or over, and almost 50,000 people died while waiting for their application to be processed. Reflecting on the operation of DoLS, the charity said, “The reality therefore is that the rights of some of the most vulnerable older people in our society have been and continue to be routinely denied.”

Too many people are waiting too long for a DoLS authorisation, while variation in the level of knowledge of staff means that others may not have a DoLS authorisation in place when they need one. For many, the current DoLS system is not providing the vital safeguards they need. After a decade of chronic and widely documented issues, urgent action is required to ensure the system does not continue to fail people in the future.

The “Cheshire West case” refers to a landmark 2014 UK Supreme Court ruling, P (by his litigation friend the Official Solicitor) v Cheshire West and Chester Council, which established the “acid test” for deprivation of liberty. It ruled that a person is deprived of their liberty if they are under continuous supervision and control and are not free to leave, regardless of their reasons for being there or their level of objection. This ruling expanded the definition of deprivation of liberty and clarified that anyone in this situation, who lacks the mental capacity to consent, must have their confinement authorised by the Court of Protection or the Deprivation of Liberty Safeguards (DoLS) process.  

Key aspects of the ruling:

  • The “acid test”: To determine if a person is deprived of their liberty, the key questions are:
    • Is the person under continuous supervision and control? 
    • Is the person not free to leave? 
  • Objective and subjective elements: The ruling confirmed that a deprivation of liberty is determined by an objective test of the care arrangements, which then requires a subjective test of whether the person lacks the mental capacity to consent to their confinement. 
  • Impact on care: The ruling made it more difficult to place vulnerable individuals in care homes or other settings without the proper legal authorisation, and it expanded the use of the DoLS process to ensure legal protection for those deprived of their liberty. 
  • Legal consequences: The judgment requires that any deprivation of liberty for a person lacking capacity must be authorised either by the Court of Protection or by following the Deprivation of Liberty Safeguards (DoLS) process. 

DHSC urges Supreme Court to overturn ‘clearly wrong’ Cheshire West ruling on deprivation of liberty

Government says ‘acid test’ set out in landmark 2014 ruling deviated from European Court of Human Rights case law, however charities have warned that its intervention risks removing vital safeguards from disabled people

By Mithran Samuel on October 16, 2025 in AdultsSocial work leaders

The UK government has urged the Supreme Court to overturn its landmark Cheshire West judgment on deprivation of liberty in a case that will be heard next week.

In an intervention in the case, which will be heard from 20-22 October, the Department of Health and Social Care (DHSC) said the 2014 judgment was “clearly wrong” because it departed from European Court of Human Rights (ECtHR) case law in relation to the definition of a deprivation of liberty.

However, its intervention has been strongly criticised by charities Mencap, Mind and the National Autistic Society as “deeply troubling” and risking the removal of vital safeguards from thousands of disabled people.

Cheshire West’s impact

Cheshire West significantly widened the definition of a deprivation of liberty compared with what had previously been the case in England and Wales, leading to a huge spike in the number of cases requiring authorisation through the Deprivation of Liberty Safeguards (DoLS) or a Court of Protection order.

The number of Deprivation of Liberty Safeguards (DoLS) referrals hit a new high in 2023-24 but practitioners managed to cut backlogs, official figures have shown.

Care homes and hospitals made 332,455 applications to deprive a person of liberty for their own protection last year, up 11% on the figure for 2022-23, according to NHS England’s annual DoLS data.

Reduction in DoLS backlogs and timeframes

However, despite this, council DoLS practitioners managed to curb both case backlogs and timeframes on the back of a 12% rise in the number of applications they processed during 2023-24, to a record 323,870.

While the average duration of cases remained well above the 21-day statutory timeframe for standard DoLS applications, it fell from 156 to 144 days from 2022-23 to 2023-24.

And the number of uncompleted applications at 31 March 2024 fell by 2% year on year, from 126,100 to 123,790.

About the Deprivation of Liberty Safeguards

  • DoLS provides a statutory procedure in England and Wales for authorising the deprivation of liberty of people for care or treatment, as required under Article 5 of the European Convention of Human Rights.
  • Care homes or hospitals (‘managing authorities)’ must apply to councils or Welsh health boards (‘supervisory bodies’) to authorise a prospective or existing deprivation.
  • Supervisory bodies must then assess whether the six qualifying requirements are met: that the person is 18 or over, has a mental health condition and lacks capacity to consent to the deprivation; that the deprivation does not conflict with requirements of the Mental Health Act 1983, a prior advanced decision by the person or the decision of a Court of Protection-appointed deputy or a donee of lasting power of attorney; and that being deprived of their liberty is in their best interests, necessary to protect the person from harm and a proportionate response to the severity or likelihood of that harm.
  • The last of those checks is carried out by a best interests assessor, who is typically a social worker and generally co-ordinates the assessment process.
  • Where the qualifying requirements are met, the supervisory body grants the managing authority a ‘standard authorisation’ to deprive the person of their liberty for a maximum of 12 months.
  • The DoLS process must be completed within 21 days, other than when the managing authority has granted itself an ‘urgent authorisation’ to deprive the person of their liberty, in which case it should take seven days.

The figures showed that DoLS practitioners processed more than three times as many cases in 2023-24 compared with 2015-16 (105,055), during which time the number of referrals less than doubled.

As has been the case since 2019-20, more completed applications were not granted in 2023-24 (181,940) than granted (141,925).

Uncompleted assessments

However, for the first time, the data demonstrated that, in the vast majority of cases where an authorisation was not granted, the application was closed without an assessment being started (162,655) or completed (15,270). Where an assessment was completed – in 145,945 cases – 97% resulted in a DoLS authorisation.

In cases that were closed without an assessment being carried out, this was likely to be because the person’s circumstances had changed or they had died before the process could be started.

Unsurprisingly, these cases were concentrated in acute hospitals, where DoLS authorisations are required relatively briefly during a treatment episode.

Of 100,550 applications made by acute hospitals in 2022-23, just 4,645 resulted in a completed assessment.

Under the Court of Appeal’s judgment in R (Ferreira) v HM Senior Coroner for Inner South London [2017]there is no requirement for a DoLS authorisation in cases where a person is receiving life-saving treatment that did not differ from what would be given to a person without a mental health problem.

deprivation of libertyDeprivation of Liberty Safeguards

Policy Critique: Form OPG130 and the Risk of Procedural Injustice in the Safeguarding Process

Executive Summary

Form OPG130, issued by the Office of the Public Guardian (OPG), is intended as a tool to report concerns about the conduct of an attorney or deputy acting under a Lasting Power of Attorney (LPA) or Enduring Power of Attorney (EPA). While the objective of safeguarding vulnerable donors is legitimate and necessary, the design and operational use of this form raise significant concerns about procedural fairness, the presumption of innocence, and the potential for reputational and legal harm to individuals accused of abuse without evidence.

This critique highlights key flaws in the current policy underpinning Form OPG130, particularly the use of pre-determined abuse categories and the ease with which an individual may be named as a perpetrator without recourse to immediate defence or redress. The form’s structure and implementation risk facilitating unsubstantiated allegations, undermining natural justice, and ultimately diminishing trust in the safeguarding framework.

Overview of Form OPG130

Form OPG130 allows any person to report concerns about a donor’s welfare or decision-making arrangements. The form includes:

  • A list of pre-defined abuse categories (e.g., financial, physical, emotional)
  • Fields for describing incidents or concerns
  • A section to name the person(s) alleged to be responsible

The OPG uses this information to determine whether further investigation or referral is warranted. However, the form’s design and handling processes merit critical examination.

Pre-Determined Abuse Categories: Oversimplification and Presumption

The form presents a tick-box list of abuse types without requiring the complainant to demonstrate a credible threshold of evidence. These categories—while reflective of genuine safeguarding concerns—are problematic in policy terms due to:

  • Subjectivity: Terms like “emotional abuse” or “neglect” lack clear, uniform definitions in lay usage and may be applied inconsistently.
  • Ease of allegation: The form allows serious allegations to be made without scrutiny, inadvertently lowering the bar for potentially harmful or false claims.
  • Implied validation: By embedding abuse categories in the form’s structure, the OPG may be seen to lend credence to claims at the point of receipt, regardless of merit.

From a policy design standpoint, this introduces a presumption that once an allegation is made, it holds sufficient weight to prompt intervention—even absent corroborating evidence.

Identification of ‘Perpetrator’: Accusation Without Defence

The form explicitly invites the complainant to name an individual they believe to be responsible for the alleged abuse. Critically:

  • No evidentiary threshold is required at the time of submission.
  • The accused is not notified at this early stage and therefore lacks the opportunity to respond in real time.
  • The allegation is effectively recorded in an official safeguarding process, potentially triggering investigations and reputational consequences.

This policy design runs counter to fundamental principles of fairness and accountability. It lacks procedural balance and undermines the presumption of innocence, creating a high risk of injustice to those accused.

Absence of Safeguards Against Malicious or Misguided Reporting

There is currently no clear mechanism within Form OPG130 to:

  • Vet the credibility or motivation of the complainant at the initial reporting stage;
  • Require declarations of truthfulness under penalty of law;
  • Penalise false or malicious reports.

This gap in policy fails to protect individuals from being targeted as part of family disputes, inheritance conflicts, or personal grievances unrelated to actual abuse. The absence of meaningful safeguards creates a significant risk of misuse.

Disproportionate Consequences and Asymmetric Rights

The policy framework surrounding Form OPG130 allows potentially severe consequences to flow from unsubstantiated allegations:

  • Suspension of powers of attorney
  • Disruption of care arrangements
  • Reputational and emotional harm
  • Referrals to safeguarding boards or police

In contrast, the accused has no structured pathway to rebut or contextualise the allegation at the outset. The process is asymmetrical, offering protections to the complainant but none to the accused. This undermines legal norms such as:

  • Audi alteram partem – the right to be heard
  • Equality of arms in quasi-judicial processes
  • Proportionality of state intervention

From a public policy perspective, this imbalance erodes trust in safeguarding systems and may deter capable attorneys from continuing in their roles.

Policy Recommendations

To ensure that safeguarding mechanisms remain fair, effective, and accountable, the following reforms to Form OPG130 and its associated procedures are recommended:

Evidentiary Threshold

Require complainants to provide specific supporting information and, where possible, documentary evidence to substantiate allegations.

Declaratory Statement

Include a formal declaration that allegations are true to the best of the complainant’s knowledge, with a warning about the legal consequences of false reporting.

Initial Credibility Screening

Introduce a triage mechanism within the OPG to assess the plausibility and seriousness of allegations before any formal investigative steps are taken.

Right of Reply

Establish a structured process for notifying accused individuals and offering a prompt opportunity to respond before further action is initiated, except in urgent risk cases.

Transparency and Record-Keeping

Ensure that accused individuals are informed of any allegations retained in official records and have access to a clear process for rectification or removal of unfounded accusations.

Guidance and Training

Provide clear public guidance on what constitutes different types of abuse and the threshold for reporting, to reduce misunderstanding and inappropriate referrals.

Form OPG130, as currently implemented, lacks adequate safeguards to prevent misuse and fails to uphold key principles of natural justice. While protecting vulnerable individuals is a core function of the Office of the Public Guardian, this must not come at the expense of procedural fairness or the rights of those accused.

A rebalancing of the policy framework is urgently required to preserve the integrity of the safeguarding process, protect all parties involved, and ensure public confidence in the operation of powers of attorney.

Critical Analysis of Form OPG130: Concerns About a Donor (LPA/EPA) – Focus on Pre-Determined Abuse Categories and Injustice Toward the Accused

Introduction

Form OPG130, issued by the Office of the Public Guardian (OPG) in the United Kingdom, is designed to allow concerned individuals to report suspicions of abuse regarding a donor under a Lasting Power of Attorney (LPA) or an Enduring Power of Attorney (EPA). While the safeguarding of vulnerable individuals is a crucial function of the OPG, the design and structure of OPG130—particularly the use of pre-determined abuse categories and the approach to identifying alleged perpetrators—raises significant concerns about procedural fairness, natural justice, and the rights of the accused.

Pre-Determined Categories: Presumption of Guilt

The form lists predefined categories of abuse such as:

  • Financial abuse
  • Physical abuse
  • Emotional or psychological abuse
  • Neglect
  • Sexual abuse

These categories, while reflecting real and serious types of harm, may lead to unintended consequences when placed on a reporting form without context or an evidentiary requirement. The issue lies not in their inclusion per se, but in how they are presented:

  • Tick-box simplicity: The form allows allegations to be made simply by ticking boxes. There is often no requirement for substantial evidence, corroboration, or detailed narrative beyond what the reporter chooses to provide.
  • Ambiguity and subjectivity: Terms like “emotional abuse” or “neglect” can be highly subjective and open to interpretation. In family or care contexts, particularly those involving complex dynamics or disagreements over care decisions, such labels can be misused or misunderstood.

By structuring the form this way, the OPG risks encouraging speculative or malicious allegations under the guise of safeguarding, with little scrutiny at the reporting stage.

Identification of the ‘Perpetrator’ Without Evidence

Perhaps the most troubling aspect of the form is the section that invites the reporter to name the “person responsible for the abuse”—effectively labelling an individual as a perpetrator before any investigation has taken place.

  • No burden of proof: The form does not ask the reporter to present evidence beyond their own account. There is no legal threshold to meet before someone’s name is recorded as a suspected abuser.
  • Impact on the accused: Once named, a person can be subjected to investigations, reputational damage, and distress—all before they are even notified of the allegation, let alone given a chance to respond.
  • No right to immediate response: The accused does not have automatic recourse to challenge the allegation at the point of submission. The OPG may begin inquiries or refer matters to social services or police without the accused having the opportunity to correct inaccuracies or defend themselves.

This dynamic can result in serious miscarriages of justice, particularly where allegations are made maliciously, based on misunderstandings, or as a result of personal disputes.

Injustice and the Erosion of Natural Justice

At the heart of the criticism is a fundamental lack of procedural fairness—commonly referred to as natural justice. The principles of natural justice include:

  • The right to a fair hearing
  • The right to be informed of allegations
  • The right to respond to and challenge those allegations
  • The right to an impartial investigation

Form OPG130, in its current structure, undermines these principles:

  • No balancing mechanism: There is no equivalent form or process for an accused person to formally respond at the same stage. The investigative process may not include or prioritize the perspective of the accused until later—if at all.
  • Risk of disproportionate responses: The mere presence of an allegation may trigger significant interventions, such as suspension of powers or referral to authorities, regardless of whether the claims are substantiated.
  • No penalties for false allegations: There appears to be no clear warning on the form about the consequences of making false or malicious accusations, which would serve as a deterrent to misuse.

Potential for Abuse of the Safeguarding Process

Ironically, a form intended to prevent abuse may itself be vulnerable to being used abusively. Disputes over finances, inheritance, family dynamics, or care decisions may prompt individuals to use the form as a weapon—especially when there is no immediate scrutiny of their motives or evidence.

This creates a paradoxical situation:

  • The vulnerable party may become more vulnerable: Disruption caused by false allegations can destabilize care arrangements or damage trust between the donor and attorney.
  • The accused may suffer irreversible harm: Reputational damage and emotional distress can occur even if the allegations are ultimately dismissed.

While the safeguarding of donors under LPAs and EPAs is undeniably important, Form OPG130 in its current form presents serious concerns about fairness and justice. The use of pre-determined categories of abuse and the ease with which an individual can be labelled a perpetrator without evidence or recourse undermines the principles of due process and opens the door to misuse.

To align better with principles of justice and the rights of all parties involved, the OPG should consider reforms such as:

  • Introducing a requirement for supporting evidence
  • Ensuring allegations are screened for credibility before action
  • Providing an immediate and equal opportunity for the accused to respond
  • Including clear warnings about the consequences of false reporting

Safeguarding systems must protect the vulnerable, but they must also guard against the abuse of the process itself. Without a balance, the very tools designed to uphold justice may become instruments of injustice.

Non-Adherence to Anglo-Saxon Jurisprudence and the Adversarial System

The English legal tradition is rooted in the adversarial system, where parties control litigation, present evidence, and contest each other before an impartial judge. The Court of Protection (CoP), however, operates in an inquisitorial manner—contrary to that tradition. As one commentary notes:

“The processes of the Court of Protection are essentially inquisitorial rather than adversarial. In other words, the ambit of the litigation is determined, not by the parties, but by the court… to assess whether an adult is lacking capacity and, if so, make best-interest decisions.”

This divergence raises concerns about fairness. Parties—especially family members—lack control over scope and direction, and cannot fully contest claims or evidence. Such a departure from adversarial norms undermines the CoP’s legitimacy in resolving contested legal issues.

Inequality of Arms: Health Trusts and Local Authorities vs. Families

Equality of arms means all litigants must have comparable resources, representation, and ability to present their case. But in the CoP:

Families often face public bodies like local authorities or NHS trusts with vastly greater resources.

Legal aid limitations exacerbate this imbalance.

A notable case highlighting systemic issues was when Mr Justice Charles adjourned four CoP cases to urge the government to fund legal representation for vulnerable parties—citing that without it, the Court would breach Article 5 ECHR (liberty rights) and common law principles. He labelled this situation a by-product of austerity and resource failure.

The AJ v A Local Authority (2015) case also illustrates concerns: an 88-year-old with dementia (AJ) had to rely on a niece and social workers to represent her interests amid DOLS procedures, raising questions about her capacity to challenge her deprivation of liberty.

Further, in Re JM (2016), the Court faced a “Catch-22”: no pool of willing representatives (rule 3A) existed, and local or central government offered no help. The Court stayed proceedings and joined the Centre (MOJ and Dept of Health) to compel solutions. These examples show how families and P often face institutional disadvantages within the Court.

Admission of Unverified and Hearsay Evidence

Anglo-Saxon jurisprudence typically prohibits hearsay unless expressly allowed, with heavy safeguards. Yet the CoP admits hearsay more readily. In London Borough of Enfield v SA &

Ors (2010), Macfarlane J confirmed that hearsay is admissible, particularly from those incompetent to testify but cautioned that weight must be assessed case by case.

While the judgment is careful, mere admissibility of unverified hearsay risks cases being decided on untested statements, reducing reliability. In traditional adversarial courts, hearsay without cross-examination would typically be excluded or heavily scrutinized.

Arbitrary Decision-Making and Excluding Pertinent Evidence

A key principle of fair trials is full disclosure and consideration of all relevant evidence. In London Borough of Enfield, Macfarlane J emphasized the importance of disclosure, especially in “Achieving Best Evidence” interviews—but lamented that these were not disclosed in prior proceedings.

Furthermore, CoP practice acknowledges the need for open justice and full participation:

Guidance on closed hearings/materials stresses that fairness and Article 6 ECHR generally require parties to see adverse material and respond to it.

Criticism of secret hearings notes that many intimate decisions (e.g., sexual autonomy) are made in the CoP—but in secrecy—stifling transparency and public oversight.

In effect, relevant evidence can be excluded (through non-disclosure or closed proceedings), and material may be considered in private—undermining the adversarial principle that parties respond to all contested points.

Over-Reliance on Lower-Ranking Judges in Complex Proceedings

The CoP frequently deals with highly complex factual and legal questions (e.g., capacity, deprivation of liberty, medical ethics). Yet many decisions fall to deputy judges or similarly lower-ranking judiciary whose expertise may not match the complexity:

There is no clear hierarchy or consistent assignment of senior judges to such weighty cases.

For example, in Barnet, Enfield and Haringey Mental Health NHS Trust v Mr K (2023), high-stakes decisions involving life-altering treatment were made swiftly—amid junior doctors’ strikes—and required expert legal judgment.

The complexity and gravity of such cases arguably demand more senior judicial oversight than is routinely provided in the CoP.

Concrete Case Illustrations

· London Borough of Enfield v SA & Ors (2010) Hearsay admissible, but disclosure lacking and weight questionable. Mondaq

· Re JM (2016) Procedural fairness crippled by lack of representative pool; Court had to adjourn and involve central government. Mental Health Law Online

· AJ v A Local Authority (2015) DOLS procedure and family representation issues illustrate inequality. Court of Protection Hub

· Barnet Enfield & Haringey NHS Trust v Mr K (2023) Highly complex medical/factual situation handled under pressure by possibly less experienced judges. Mental Capacity Law and Policy

· Practice guidance on closed hearings (2022) Emphasizes fairness but also highlights how CoP allows closed material, conflicting with open justice. Courts and Tribunals Judiciaryopenjusticecourtofprotection.org

· 2016 judges’ plea. Mr Justice Charles argued legal aid is essential and CoP’s current setup risks ECHR breaches. The Guardian

Conclusion: The Court of Protection Is Not a Suitable Forum

In sum:

1. It rejects adversarial norms fundamental to common law tradition.

2. It institutionalises inequality, disadvantaging families and unrepresented parties.

3. It permits untested and hearsay evidence, compromising evidential reliability.

4. It permits expert evidence from professionals aligned with institutional positions who are not independent.

5. It restricts participation and disclosure, enabling arbitrary or opaque decision-making.

6. It handles highly complex, high-stakes cases with insufficient judicial seniority, risking errors.

7. These issues have materialised in real cases, undermining fairness and legitimacy.

While the CoP was created to protect those lacking capacity, these structural flaws suggest it fails to meet the standards of a fair, just, and transparent legal forum. Reform—or alternative mechanisms aligned with adversarial fairness—should be considered.

Structural and Procedural Reforms

Restoring Adversarial Balance

Shift the CoP closer to the adversarial model by allowing parties, not the court, to set the scope of litigation.

Require full disclosure of evidence, with narrow exceptions (e.g., genuine national security or safety).

Tighten the rules on hearsay—permitting it only under strict necessity and subject to cross-examination.

Guaranteeing Equality of Arms

Expand legal aid so that families and vulnerable parties are represented on equal terms with public authorities.

Introduce a publicly funded independent advocacy service to support families unable to afford legal counsel.

Require NHS Trusts and local authorities to provide neutral expert witnesses, not only those aligned with their institutional position.

Judicial Oversight and Expertise

Require that all cases involving serious medical treatment, deprivation of liberty, or end-of-life decisions be heard by senior High Court judges, not deputies or district judges.

Create a specialist judicial panel with training in medical ethics, human rights, and capacity law.

Transparency and Open Justice

Presume that hearings should be open to the public (with anonymisation for patient privacy).

Prohibit closed material unless the parties and their representatives can access it.

Establish independent reporting panels to review systemic issues raised in CoP judgments.

Alternative Institutional Models

Specialist Tribunal Model

Replace the CoP with a Capacity and Autonomy Tribunal, akin to the Mental Health Tribunal.

Panels would include:

A judge (law)

A medical practitioner (medicine/psychiatry)

A lay member with social care or lived-experience expertise

This would democratise decision-making and bring expertise directly into the adjudication process.

Mediation and Arbitration Framework

Require mandatory mediation before CoP litigation, especially in family or local authority disputes.

Use independent medical ethics arbitration panels for cases involving treatment withdrawal, instead of a legalistic courtroom battle.

Regional Community Panels

For less complex welfare and residence cases, establish regional community capacity panels, chaired by retired judges or senior practitioners, to make quicker, less formal decisions with community involvement.

This would reduce pressure on the CoP and give decisions more local legitimacy.

Integration with Human Rights Bodies

Transfer certain functions (e.g., deprivation of liberty appeals) to an independent human rights tribunal with binding powers.

Ensure all decisions explicitly comply with Article 5 (liberty) and Article 8 (family/private life) of the ECHR.

Safeguards for Vulnerable Adults

Introduce mandatory independent representation (a “capacity defender”) for every person lacking capacity, similar to the Official Solicitor but with regional offices and wider coverage.

Create a special fund to finance expert evidence for families, ensuring they can challenge medical or social care opinions.

Legislate for strict evidential standards, requiring corroboration where allegations are based on hearsay.

Comparative Lessons

Canada (Consent and Capacity Board): Uses panels of judges, doctors, and lay members to resolve disputes quickly, often within days.

Scotland (Adults with Incapacity Act): Involves the Sheriff Court, providing more robust judicial oversight and community involvement.

New Zealand (Family Court model): Prioritises less adversarial but still evidence-based approaches, with strong safeguards for participation.

Summary: The Court of Protection could be reformed by strengthening adversarial safeguards, improving representation, ensuring senior judicial oversight, and opening up its processes. Alternatively, replacing it with a tribunal-style body or hybrid community/ethics panel system may offer a more transparent, balanced, and expert-driven forum.

Comparative Policy Proposal — Replacing the Court of Protection with a Capacity & Autonomy Tribunal

Executive summary

The current Court of Protection (CoP) was created to protect adults who lack capacity. However, recurring concerns about adversarial imbalance, reliance on hearsay, uneven judicial expertise, secrecy, and resource inequalities suggest the need for structural reform. This proposal sets out a practical, comparative blueprint to replace the CoP with a specialist Capacity & Autonomy Tribunal (CAT), a hybrid tribunal/bench model that combines legal rigour, multi-disciplinary expertise, adversarial safeguards, and stronger procedural protections for vulnerable parties.

Key features:

· Specialist tribunal panels (judge + medical + lay member with lived-experience/social-care knowledge).

· Stronger adversarial safeguards, mandatory independent representation for P where necessary, and tighter hearsay rules.

· Transparent hearings by default with narrow, reviewed exceptions for closed material.

· Regionalised structure with central oversight and specialist appellate review by a High Court division.

Objectives & principles

The CAT should be designed to achieve:

1. Fairness & equality of arms — ensure parties (family/P) are not disadvantaged versus public bodies.

2. Legal and clinical expertise — decisions informed by both high-quality legal reasoning and relevant clinical/ethical input.

3. Adversarial safeguards — allow parties to test evidence, cross-examine witnesses, and control litigation scope within appropriate rules.

4. Transparency & open justice — default public access with strong anonymisation and narrowly-defined closed material procedures.

5. Speed, proportionate process, and accessibility — quicker resolution for welfare/residence matters while preserving rigorous procedure for life-and-liberty disputes.

6. Human rights compliance — explicit integration of ECHR Articles 5 & 8 in procedure and reasoning.

Comparative models: lessons learned

Canada (Consent and Capacity Board / Province-level variations)

Panel-based decisions with non-legal experts; fast timetabling for urgent liberty matters. Lesson: multidisciplinary panels speed practical decisions but must be balanced with legal safeguards.

Scotland (Adults with Incapacity mechanisms; Sheriff Court involvement)

More robust judicial oversight with court routes for serious deprivation of liberty; community input. Lesson: stronger judicial hierarchy improves protection of fundamental rights.

New Zealand (Family Court / welfare-led approaches)

Focus on less adversarial process with mediation and family participation. Lesson: mandatory dispute-resolution options reduce litigation and preserve relationships.

Proposed institutional design

Name and mandate

Capacity & Autonomy Tribunal (CAT) A statutory body replacing the Court of Protection for all matters concerning capacity, best interests, deprivation of liberty (civil), and specified personal welfare/health disputes. Matters involving crimes, wills, or property probate remain outside scope (or handled in parallel routes).

Structure

· National Leadership: President of the CAT (High Court judge or equivalent senior judiciary) with a national registry, rules committee, and quality assurance unit.

· Regional Tribunals: Regions (e.g., 8–12) with full-time tribunal judges and administrative staff.

· Panels:

o Standard Panel (for routine welfare/residence disputes): Tribunal judge (chair) + Lay member (social care / lived experience).

o Complex/Serious Panel (for deprivation of liberty, life-sustaining treatment, forced treatment): Tribunal judge (must be a senior judge, e.g., High Court or designated senior tribunal judge) + medical expert (psychiatrist/physician) + lay member with ethics/social care background.

· Emergency fast-track stream: Immediate single-judge hearings for urgent liberty cases, followed by full panel review within a fixed short period (e.g., 7 days).

Jurisdiction

· Determination of capacity for specific decisions.

· Best-interest determinations (residence, care, treatment).

· Authorisation and review of deprivation of liberty arrangements (civil).

· Appointment, supervision, and challenge of deputies/guardians.

· Appeals and judicial review routes (see below).

Procedural rules: balancing inquisitorial utility with adversarial protections

Scope-setting & case management

· Parties propose scope; the tribunal may refine scope for proportionality but cannot expand issues without party notice.

· Mandatory early directions hearing in all cases to set:

o Issues list

o Witness list and timing

o Disclosure orders

o Whether mediation is required

Evidence and hearsay

· Default rule: oral evidence under oath + cross-examination where oral evidence is available.

· Hearsay admissible only where:

o the witness is genuinely unable to attend (e.g., lacks capacity, is deceased), and

o corroboration is available or the tribunal orders viva voce evidence by an alternative witness or expert.

· Any hearsay admitted must be identified on the issues list; the admitting judge must give reasons and direct proportionate testing (e.g., short oral evidence, expert verification).

Disclosure and document handling

· Automatic disclosure obligations on public bodies (NHS trusts/local authorities), with sanctions for non-compliance (cost orders, adverse inferences).

· Parties must disclose expert reports to each other within fixed timeline; “late” expert evidence requires court permission.

Closed material / privacy

· Default: open hearings with anonymisation orders where appropriate.

· Closed material regime only where stringent tests are met (necessity & proportionality) and where both parties’ legal representatives — including the independent representative for P — can see the material (special advocates only where unavoidable).

· Annual external review of closed orders by the national oversight panel.

Representation & legal aid

· Mandatory independent representation for P in all deprivation of liberty, serious medical treatment, or contested capacity cases (a “Capacity Advocate/Defender”), funded by central legal aid or a dedicated statutory fund.

· Families are eligible for legal aid on means and merits; if family are litigants-in-person, the Tribunal must identify and appoint independent legal assistance for P where conflicts exist.

· Right to expert evidence funded by the tribunal in cases where the party cannot afford it and the evidence is material.

Case types and timetables

· Urgent liberty cases: hearing within 48 hours; full panel review within 7 days.

· Serious medical treatment / end-of-life: pre-hearing ethical review and full panel within 21–28 days.

· Routine welfare/residence: streamlined timetables (e.g., 6–12 weeks) with mediation first.

Judicial oversight, appeals and review

· First-tier decisions by CAT panels; appeal on points of law or significant procedural unfairness to a dedicated Capacity & Autonomy Appeal Chamber of the High Court (or a specialist division), with expedited timetabling for liberty matters.

· Judicial review remains available for errors of jurisdiction, but appeal routes should be designed to reduce unnecessary JR litigation.

· Oversight by President of the CAT with annual reporting to Parliament on systemic issues, closed hearings, resource shortfalls, and ECHR compliance.

Safeguards to protect P and human rights

· Capacity Defender role — independent and statutory with duty to represent P’s wishes and rights, challenge evidence, and instruct experts.

· Best-interests checklist codified and integrated with ECHR obligations (Articles 5 & 8) — tribunal must provide explicit proportionality reasoning when liberty or private/family life is impacted.

· Independent monitor for long-term detention/authorisations: periodic reviews (3 months, then every 6 months).

· Data protection & anonymisation safeguards in public reports and judgments.

Funding, resourcing & equality of arms

· Central funding ring-fenced for:

o CAT registry operations,

o Capacity Defenders and public legal aid for P/families,

o Tribunal-appointed expert witnesses.

· Financial parity rules: public bodies must disclose costs and cannot subsidise litigation advantage through undisclosed expert reserves.

· Efficiency measures: digital filing, remote hearings where suitable, national expert panel to reduce duplicated expert costs.

Transitional arrangements (how to move from CoP to CAT)

1. Primary legislation to create CAT and set jurisdiction (example statutory timetable: Royal Assent + 12 months to stand up).

2. Shadow phase (6–12 months):

o Appoint President and senior panel members,

o Recruit regional registries,

o Pilot CAT procedures on a subset of cases (e.g., welfare/residence matters).

3. Full roll-out (months 12–24): transfer cases, retire CoP appointments, national training program for judges and Capacity Defenders.

4. Legacy cases: transitional rules to finish sensitive ongoing litigation or transfer with consent.

Legislative and regulatory changes required (high level)

· Repeal/replace core CoP enabling provisions with CAT statute.

· Amendments to:

o Mental Capacity Act (to align definitions, representation rights, and procedural safeguards).

o Mental Health and health-care legislation where deprivation or treatment authorisations intersect.

o Legal Aid Act (to create ring-fenced funding for Capacity Defenders).

· Secondary legislation to set tribunal rules, panel composition, and closed material procedure.

Accountability, quality assurance & oversight

· National Rules Committee (including judicial, clinical, and civil society membership) to keep rules under review.

· Independent Inspection & Audit Unit to publish annual metrics: timeliness, appeals rate, use of closed hearings, proportion of litigants-in-person, and user satisfaction.

· Parliamentary reporting with annual statement on ECHR compliance.

Costs, benefits & impact assessment (summary)

Costs

· Initial set-up: recruitment, training, IT and property.

· Ongoing: Capacity Defender network, tribunal registry running costs, expert panels.

Benefits

· Greater procedural fairness and equality of arms.

· More consistent, expert-informed decisions reducing appeals and judicial review costs long-term.

· Increased transparency and public confidence.

· Faster resolution for routine cases and better protection of liberty in urgent cases.

Net effect: Upfront public investment likely offset over time by reductions in costly litigation, improved outcomes, and fewer successful appeals/JR claims against the state.

Implementation roadmap — suggested timetable

1. Months 0–6: Policy approvals, draft legislation, stakeholder consultation (including NHS, local authorities, patient advocacy groups, legal profession, judiciary).

2. Months 6–12: Parliamentary passage; set up transitional implementation board; begin recruitment of President and senior staff.

3. Months 12–18: Shadow operations and pilots for rules and Capacity Defender scheme.

4. Months 18–24: Full activation and transfer of cases to CAT.

5. Year 3 onward: Monitoring, rule refinement, public reporting, and formal review after 3 years.

Measurable success criteria (KPIs)

· Time to first hearing (urgent liberty cases: ≤48 hrs; serious medical: ≤28 days).

· Proportion of P represented by Capacity Defender (target 100% where deprivation of liberty or serious treatment at issue).

· Appeal/JR rate reduced year-on-year (target: 20% reduction in 3 years).

· Use of closed hearings reduced and subject to independent review.

· Stakeholder satisfaction (families, professionals, P) measured annually.

Risks and mitigation

· Risk: Initial costs and recruitment difficulties. Mitigation: Phased roll-out; reuse of existing CoP staff; central funding guarantee.

· Risk: Resistance from existing institutions (courts, local authorities). Mitigation: Stakeholder engagement, transitional protocols, shared training.

· Risk: Potential for procedural complexity delaying cases. Mitigation: Proportio

Recommended next steps (policy actions)

1. Convene a cross-departmental working group (Ministry of Justice, Department of Health & Social Care, NHS England) and an independent expert panel (judicial, clinical, civil society).

2. Commission a full costed business case and impact assessment.

3. Draft primary legislation and open a public consultation with targeted focus groups (families, mental capacity NGOs, and disability rights organisations).

4. Pilot the Capacity Defender model and the complex panel approach in two regions within 12 months.

Appendix — Suggested statutory outline clauses (short form)

1. Establishment — “There shall be a Capacity & Autonomy Tribunal (the CAT). The CAT has jurisdiction over matters under the Mental Capacity Act relating to capacity determinations, best-interest orders, deprivation of liberty authorisations, and deputy/guardian appointments…”

2. Panel composition — “The CAT shall hear matters in panels constituted as prescribed: standard and complex panels as set by regulations; complex panels require a legally qualified chair designated by the President.”

3. Representation — “Where the person lacks capacity and the matter involves deprivation of liberty or life-sustaining treatment, the Tribunal shall appoint a Capacity Defender at public expense.”

4. Open justice — “Hearings are presumptively open. Closed material only on strict necessity test and upon reasons published to the extent consistent with privacy.”

5. Appeals — “Appeal to the Appeal Chamber on points of law or significant procedural unfairness. Emergency appeal timetabling for liberty matters.”

Closing note

This comparative proposal aims to preserve the fundamental protective purposes of the existing regime while repairing its defects: restoring adversarial safeguards, guaranteeing equality of arms, ensuring technical and ethical expertise on decision-making panels, and making the system more transparent and rights-compliant. The Capacity & Autonomy Tribunal is a pragmatic hybrid model — tribunal-style speed and expertise combined with judicial safeguards — designed to offer better outcomes for vulnerable adults, families, and public bodies alike.

Elizabeth is spending yet another year like a prisoner under the NHS. It is the fourth year of detention that has had no benefit whatsoever for Elizabeth who wishes to come home and see her cat.

I took presents and cards plus a Birthday cake that I had made by a local person in my new area.

I also bought a present for one of Elizabeth’s friends. Thank goodness she has made nice friends.

It is a supposed to be a rehab unit and you would think this would mean less restrictions. There are less restrictions when it comes to ordering takeaways and she is allowed group leave but as far as I am concerned the NHS Trust have blocked me from having any kind of meaningful contact and every visit is supervised and I am allowed no leave alone at all with her. The phone is still taken away and held securely in the office and I appear to be the centre of safeguarding. Nothing is done in an open transparent manner and what is so disturbing is that an entire team of nurses, doctors, healthcare assistants dutifully do what they are ordered to do by someone giving out “Executive Orders”. On the previous ward those “executive orders” were to punish if behaviour was in any way thought to be rude/aggressive. Cant believe this is NHS care to punish a patient who was missing countless meals desperately trying to avoid the noise, the bright lights and atmosphere of the ward. There is absolutely no accountability under the Trust and sadly this has been the case in the former area too. Whilst I am supervised 2-1 like a criminal this must be putting a strain on the ward as I have always heard about staff shortages. That might apply in the case of when I phone and there is no-one around to supervise. All this has been going on since the previous ward under a certain RC who banned me completely stating “I am banning you indefinitely“. You are wasting your time complaining to the GMC or other sources who could not care less and there are other such professional agencies who carry out investigations and do not find fault by professionals concerned. All the blame and fault is put upon a parent and carer and I know I am not alone here and to think I was not asking for any care in the community and had provided suitable accommodation.

Anyway there were times today when Elizabeth looked really sad and when I asked what was the matter she said she was fed up of being on the ward and things were going round and round in circles and I understood what she meant. A few times today Elizabeth made comment that she wanted to come home and missed home and family and that she had spent all day in her room too frightened to come out onto the ward yet her never ending detention is said to be of “best interest” whilst they have tried to rig every capacity assessment in THEIR BI.

The rest of the family are not restricted but hardly visit. I am the only regular weekly visitor. When the rest of the family do visit they are allowed several hours to take Elizabeth out.

It is very sad that such people as nurses, doctors etc just do nothing but carry on without a word. I think the Trust has serious problem with bullying that the current situation of enhanced supervision has been ongoing for about a year now following on from a complete ban and to date, one hour supervised 2-1.

The last words Elizabeth said was “I am not happy” and when I asked why she was not happy she just said “I am not happy about this whole situation”. The rest of the family are visiting next week. Unlike me they can take Elizabeth out for a few hours. Elizabeth mentioned a couple of times she would like me to be included with the rest of the family’s visit next week but I am pretty sure that will not be allowed.

The restrictions on me are a means of punishment but they inflict upon Elizabeth. They are not keeping her safe. They are putting lives at risk by the heavy supervision upon me leaving the ward under pressure. Elizabeth is not getting nearly enough fresh air and exercise.

Since moving to this dreadful area she has started having seizures and these have been ongoing since 2022 and she now has a walker because she struggles to walk and due to lack of exercise going back to 2022 a doctor told her then she had muscle weakness to entire body. She is being neglected with her physical health. The gym is only open in the morning and she is asleep much of the time because she is upon most of the night when it is peaceful on the ward.

This is not “care” and all of this is being done for a purpose with family cut out of everything like a religious cult. Take the recent CTR, nothing was arranged properly and this should have been arranged properly by the Commissioners. A CTR is all about the patient listening to what the patient wishes and Elizabeth wishes to come home.

Sadly I could not provide the best present ever for her to have the slightest bit of leave back home and to see her cat.

The safeguarding against me is affecting my physical health and work. I had been a reviewer of MH services of the highest standard.

I know that everything is aimed at me to punish and deprive contact and even a capacity assessment was done by the Clinical lead on “Whether or not to have any contact with Mother”. The clinical lead was aided by the advocates who are supposed to be independent and the advocates are no longer involved as I have an email from them to say she is not ready to engage. How would anyone wish to engage with such a firm who cannot even be bothered to acknowledge my complaint.

No advocate no solicitor no phone. Cut off from the outside world and treated like an object. This is NHS MENTAL HEALTH CARE for you and I am far from alone with my experience. Human Rights are completely ignored along with their own Code of Conducts and NHS Guidelines.

I used to wonder how someone could end up held a prisoner for so long by MH institutions however I now understand and it is not only the MHA but MCA being abused whilst human rights are non existent.

The worst thing of all is the neglect towards physical health under MH and again I am not alone with this experience. I was asked today why I did not attend ward rounds and that is simply because I am not invited.

Held at:County Offices, Newland, Lincoln, LN1 1YL Extract from Minutes of the Adults and Community Wellbeing Scrutiny Committee Lincolnshire County Council
A meeting of the Adults and Community Wellbeing Scrutiny Committee took place on Wednesday, 4 September 2024 at 10.00 am in the Council Chamber, County Offices, Newland, Lincoln LN1 1YL.
Debbie Barnes OBE Chief Executive
.

The Minutes stated:
Many older adults may have been misdiagnosed with mental health issues for decades, often leading to a misunderstanding of their true cognitive and emotional needs. Data was being gathered on these individuals, especially those with learning disabilities, who tend to be identified earlier in their lives, allowing for potentially more effective interventions. However, despite this positive trend, there were significant challenges in the system???? The Integrated Care Board (ICB) recognized the need for immediate action and funded various services for 16-18 year olds, aiming to create a streamlined pathway for young individuals needing support. Unfortunately, there is a national issue with excessively long waiting lists for neurodevelopmental services, which further complicated access to necessary care. Waiting times for diagnosis were reported to be up to a year (4 IN ELIZABETH’S CASE) locally for those seeking help; in some regions, it could extend to an alarming seven years elsewhere, exacerbating the situation and leaving many individuals without the support (AND CORRECT TREATMENT) they desperately needed. This stark discrepancy highlights not only the urgent need for improvements in service delivery but also the importance of re-evaluating how mental health and developmental disorders are diagnosed across different age groups.”

In Elizabeth’s case, Developmental was mentioned in the first instance and as far back as 2007 scans were not normal. Being denied pathological tests goes well beyond a year – over a lifetime combined with former area, well before moving but now detention under the MHA is in its fourth year and there should therefore be no excuses for any further delays for essential neurological tests. What is the point in a CTR that does not review treatment effectively, excluding physical health and family for a vulnerable person held long term under MH for following reasons:

When is Referral for Neurological Testing Necessary?

Referral for neurological testing may be clinically indicated in several situations, including but not limited to:

Neurological symptoms such as persistent headaches, dizziness, weakness, visual disturbances, or cognitive changes.

Manifestations of seizures or fits or neurological reactions to stimuli or potential allergens. 

Red flag symptoms indicating serious underlying conditions like a brain tumour, stroke, or multiple sclerosis.

Unexplained neurological signs after an injury or trauma, particularly head injuries, where a clinician might suspect a neurological disorder.

If a responsible clinician fails to refer a patient when such symptoms or red flags are present, and that failure leads to harm (e.g., delayed diagnosis of a serious neurological condition), there may be grounds for a negligence claim. 

A clinician might be at risk of a negligence claim if they fail to refer a patient for neurological testing when clinically indicated, especially if such a failure leads to harm that could have been avoided with appropriate testing and treatment. 

It is every bit possible that Elizabeth has been subjected to many years of inappropriate treatment due to faulty diagnosis and huge amounts of endocrine disrupting drugs, not to mention many years deprivation of liberty that could have been avoided with a more thorough medical examination. 

Case law, such as A v East of England Ambulance Service NHS Trust, emphasizes that clinical decisions must align with accepted medical practices. If a clinician’s actions are within the range of what a responsible body of medical professionals would consider reasonable, they are less likely to be found negligent. However, if their failure to refer deviates from such standards and causes harm, they could be held liable.

A v East of England Ambulance Service NHS Trust [2017] UKSC 19:

This case concerned whether a medical professional breached their duty by failing to appropriately investigate or respond to a patient’s symptoms. Although it was about a failure in emergency care, it emphasizes the importance of considering the duty to investigate symptoms properly and the risks of failing to do so. A clinician failing to refer a patient for neurological testing might be considered negligent if it can be shown that such an investigation was warranted by the patient’s presentation.

The Bolitho v City and Hackney Health Authority[1997] 3 WLR 1151 case is a key ruling in clinical negligence law, refining the Bolam test (from Bolam v Friern Hospital Management Committee [1957]).

Ruling in Bolitho:

In this case, the House of Lords considered whether a doctor was negligent for failing to attend a child in respiratory distress, despite being called to do so by nursing staff. The doctor’s absence allegedly led to the child’s death.

The central issue was whether the doctor’s decision not to attend could be justified by the standard of practice accepted by a responsible body of medical opinion (the Bolam test). In other words, was the failure to attend a reasonable decision, according to the practices of a responsible group of doctors?

The House of Lords held that the Bolam test is not an absolute shield for professionals. Although medical practice is determined by the opinion of a responsible body of medical professionals, this does not mean that any opinion, however unreasonable, will be accepted. Courts have a role in ensuring that the medical opinion is “logical and defensible”. In essence, the court can reject a medical opinion if it is deemed illogical or irrational.

Summary of the Key Points:

The Bolitho ruling clarifies that medical professionals’ practices must be reasonable and defensible. Courts will scrutinize the validity of medical opinions in negligence cases.

It made clear that even if a practice is accepted by a body of medical professionals, if that practice is not supported by a logical or reasonable explanation, it cannot be relied upon to defend against a negligence claim.

The decision to not attend the patient in Bolitho was deemed negligent because the medical practice relied upon did not have a logical basis.

So what is the ‘logical basis’ for not sending Elizabeth for tests when they are clearly needed?

The Bolitho decision thus refined the Bolam test, adding an element of judicial oversight to ensure medical opinions are reasonable and coherent, not merely accepted by a group of professionals.

Diagnostic error in mental health: a review Bradford A, et al. BMJ Qual Saf 2024;33:663–672. doi:10.1136/bmjqs-2023-016996

There is sufficient evidence here already to link the lesions and resultant inflammation with what they misdiagnose as schizophrenia and this is even evident in Elizabeth’s former doctor’ s work: Dr Shahpesandy.

It is scandalous that with the number of patients known to be misdiagnosed that there is not a root and branch re-examining of mental health assessments. It is not psychiatrists and AMPHs who should have exclusive domaine here.  The examination is nowhere near complete without a thorough neurological and immunological/endocrinological examination.  Our national mental health policy is entirely in the sway of psychiatrists and drug companies.   

A failure in pathophysiological testing for organic contributions can significantly contribute to the prevalence of misdiagnosis in schizophrenia. Reports and studies have indicated that the prevalence of misdiagnosis in schizophrenia can be significant, with estimates often cited in the range of 10% to 40%, depending on the specific context, population, and research methodology. 

Given the complexities of diagnosing schizophrenia, it is crucial for mental health professionals to use comprehensive assessment approaches to enhance diagnostic accuracy and reduce the likelihood of misdiagnosis.

Lack of Comprehensive Assessment

Many clinicians do not conduct thorough pathophysiological assessments, such as neurological evaluations and laboratory tests, which can lead to missing underlying medical conditions that mimic or contribute to psychiatric symptoms.  Some clinicians over emphasise the subjective nature of psychotic disorders and actively discourage proper pathophysiological assessments. 

Overlapping Symptoms

Certain medical conditions (e.g., infections, autoimmune disorders, endocrine abnormalities) can present symptoms similar to those of schizophrenia. Without appropriate testing, these conditions may be misidentified as primary psychiatric disorders.

Neuroimaging and Biomarkers

Advances in neuroimaging (like MRI or CT scans) and the discovery of potential biomarkers for various conditions are important for identifying organic contributions to psychosis. If these tools are not utilized, it can result in misdiagnosis.

Co-Occurring Disorders

When an underlying medical condition is present alongside schizophrenia, it may complicate the clinical picture and lead to misunderstanding or misattribution of symptoms, resulting in a misdiagnosis.

Education and Awareness

Clinicians may not always consider organic causes when diagnosing schizophrenia, especially if they lack training or awareness about how medical issues can manifest as psychiatric symptoms.

Stigma and Assumptions

There may be an inclination to diagnose psychiatric conditions like schizophrenia without sufficiently exploring organic causes, particularly in patients with risk factors for mental illness, leading to overlooking potential medical diagnoses.

Case Reports

Numerous case studies and reports highlight instances where patients initially diagnosed with schizophrenia were later found to have organic pathologies, emphasizing the necessity of pathophysiological testing in uncertain cases.

Inadequate pathophysiological testing increases the likelihood that clinicians may overlook organic contributions to a patient’s symptoms, leading to a higher prevalence of misdiagnosis of schizophrenia. Comprehensive evaluation approaches that integrate both psychiatric and medical assessments are essential for accurate diagnosis and effective treatment.

The misdiagnosis of schizophrenia can occur for several reasons, but the following are some of the main contributing factors:

Symptom Overlap

Schizophrenia shares symptoms with various other mental health disorders, such as bipolar disorder, major depressive disorder, and personality disorders. This overlap can lead to confusion and misdiagnosis.

Incomplete Clinical History

A thorough assessment requires a detailed clinical history, including past medical and psychiatric treatments. When this information is lacking or overlooked, it frequently leads to inaccuracies in diagnosis.

Subjective Assessment

Psychiatric diagnoses often rely on subjective assessments of symptoms and behaviours. Variability in how clinicians interpret and diagnose these symptoms can result in inconsistencies and misdiagnosis.

Lack of Awareness or Training:

Some clinicians may not be adequately trained to recognize the nuances of schizophrenia or the range of conditions that can mimic its symptoms, leading to incorrect diagnoses.

Stigma and Assumptions

Societal stigma surrounding mental illness may lead to hasty or biased conclusions, particularly in emergency settings where rapid assessments are made under stress.

Co-occurring Disorders

Many individuals with schizophrenia may have co-occurring disorders (e.g., substance use disorders, anxiety disorders), complicating the clinical picture and leading to misdiagnosis.

Cultural Factors

Cultural differences in the expression and interpretation of symptoms can affect diagnosis. Clinicians may misinterpret culturally specific symptoms as pathological.

Insufficient Diagnostic Tools

While there are diagnostic criteria (like DSM-5 or ICD-10), there are no objective tests (e.g., blood tests or imaging) to confirm a schizophrenia diagnosis, leading to a over-reliance on observed behaviours and self-reported symptoms.

These factors highlight the need for comprehensive assessments and clinical awareness to reduce the rates of misdiagnosis in schizophrenia.

Failing to conduct thorough pathophysiological tests when diagnosing schizophrenia can have several significant serious consequences:

Misdiagnosis: 

Schizophrenia shares symptoms with other mental health disorders such as bipolar disorder, depression, and schizoaffective disorder. Without comprehensive testing, there’s a risk of misdiagnosing the condition, leading to inappropriate treatment plans.

Inappropriate Treatment: 

Inaccurate diagnosis can result in prescribing incorrect medications, which might not alleviate symptoms and could cause adverse side effects. Patients might also miss out on the benefits of effective therapeutic interventions tailored to their actual needs.

Delayed Treatment: 

Insufficient testing might delay the correct diagnosis, postponing necessary interventions. Early and accurate diagnosis is crucial for effective treatment, and any delay can worsen prognosis and lead to more significant deterioration in quality of life.

Poor Prognosis: 

Without targeted interventions, patients may experience worsened symptoms and a decline in functioning. More comprehensive evaluations can help identify specific needs and comorbid conditions, which are integral in planning effective management strategies.

Increased Healthcare Costs: 

Misdiagnosis or delayed diagnosis can lead to increased healthcare costs due to unnecessary treatments, potential hospitalizations, and more extensive long-term care due to unmanaged symptoms.

Impact on Quality of Life: 

The individual may suffer from ongoing symptoms that could affect their daily life, social relationships, and occupational functioning. Effective treatment hinges on an accurate diagnosis, allowing patients to manage symptoms and improve their overall quality of life.

CAVERNOMAS

A thorough diagnostic process, including pathophysiological tests are necessary and help ensure that patients receive the right diagnosis and appropriate treatment, improving outcomes and reducing the burden of the disease.

A cavernoma, which is a type of vascular malformation in the brain, can potentially interfere with neurotransmission and lead to symptoms that might be misinterpreted as psychosis. Cavernomas are clusters of abnormally formed blood vessels that can disrupt normal brain function by causing bleeding, inflammation, or other structural changes.

Cavernomas, especially in areas like the temporal lobe, can cause seizures. Seizures can sometimes present with confusion, disorientation, or altered perceptions, which could be mistaken for psychotic symptoms. For example, if the cavernoma causes focal seizures, these could manifest as hallucinations, paranoia, or delusions, which are all features of psychosis.

Cavernomas, depending on their location, can affect areas of the brain responsible for cognition and emotion regulation. If a cavernoma leads to functional changes in these regions, it could cause alterations in behaviour or mood, potentially resembling symptoms of a psychiatric disorder.

A cavernoma can disrupt the normal flow of neurotransmitters in the brain, especially if it causes local damage to nerve cells or interferes with blood supply. Neurotransmitter imbalances can contribute to mood swings, hallucinations, or altered perceptions, which may be mistaken for psychotic episodes.

In some cases, the physical stress and changes caused by a cavernoma, such as chronic headaches, seizures, or neurological deficits, can also lead to psychiatric symptoms, such as anxiety, depression, or even psychotic-like symptoms. These may be misdiagnosed as primary mental health issues.

Given these possibilities, a thorough neurological evaluation, including imaging studies like an MRI, is crucial for distinguishing between a primary psychiatric disorder and a neurological condition like a cavernoma. If psychosis-like symptoms are present, a neurologist or psychiatrist should look at a range of factors to rule out any underlying brain pathology, including vascular malformations like cavernomas.

The misdiagnosis of schizophrenia due to underlying brain lesions or cerebral inflammation is a known but relatively underreported phenomenon. Although schizophrenia is primarily considered a psychiatric disorder, its symptoms can overlap with neurological conditions that cause similar cognitive and behavioural disturbances, like brain lesions, inflammation, or other structural abnormalities.

Cerebral inflammation and brain lesions, such as those caused by vascular malformations (like cavernomas), brain tumours, endocrine disorders and autoimmune diseases, can lead to cognitive impairments, mood disturbances, hallucinations, or delusions, which are also hallmark symptoms of schizophrenia. When these neurological issues are undiagnosed, individuals may be misdiagnosed with a primary psychiatric condition like schizophrenia, especially if there’s a lack of awareness about the neurological possibility.

As for the estimated incidence of misdiagnosis, studies suggest that it’s not uncommon for neurological disorders to be misdiagnosed as psychiatric conditions. A few estimates suggest that about 15-25% of individuals initially diagnosed with schizophrenia may actually have an underlying neurological condition, though this figure can vary widely depending on the specifics of the study and the healthcare setting. In some cases, lesions or inflammation are only discovered after further neurological and pathophysiological testing (e.g., brain imaging, MEG, EEG and inflammatory marker evaluation), which can shift the diagnosis.

However, it’s worth noting that schizophrenia has a distinctive clinical picture, and misdiagnosis tends to occur more often in cases where symptoms are atypical or the neurological signs are subtle. When there is clear evidence of brain lesions, seizures, or other neurological symptoms, a more comprehensive diagnostic approach (including imaging) usually helps differentiate between psychiatric disorders and neurological conditions.

Cerebral inflammation can indeed cause symptoms that may be misdiagnosed for psychotic disorders, especially when the inflammation affects areas of the brain responsible for cognition, mood, or perception.

Conditions that cause inflammation in the brain—such as autoimmune disorders, infections (e.g., encephalitis), neurodegenerative diseases, endocrine disorders or even conditions like multiple sclerosis—can lead to psychiatric symptoms such as delusions, hallucinations, mood swings, and confusion. These symptoms can overlap with those seen in psychotic disorders like schizophrenia or bipolar disorder with psychotic features.

Misdiagnosis and how it can be avoided:

Overlap of Symptoms

Inflammation in the brain can cause hallucinations, delusions, agitation, and paranoia, which are core symptoms of psychotic disorders.

Disorders like autoimmune encephalitis can cause severe mood swings, depression, or mania, which can sometimes be mistaken for mood disorders with psychotic features.

Problems with memory, concentration, and thinking (often seen in inflammation-related brain conditions) can be confused with cognitive symptoms seen in psychotic disorders.

Differentiating Between the Two

To avoid a misdiagnosis, it’s crucial to conduct a comprehensive medical evaluation. This should include a detailed history (e.g., recent infections, autoimmune history, or neurological symptoms), a physical exam, and neuroimaging (like MRI, MEG, EEG or CT scans) to look for signs of brain inflammation or structural abnormalities.

Certain blood tests or cerebrospinal fluid (CSF) tests may help identify markers of inflammation or infection in the brain. Elevated levels of certain proteins or antibodies can be suggestive of neuroinflammatory conditions. In some cases, cognitive testing can help distinguish between psychosis due to a psychiatric disorder versus cognitive dysfunction related to brain inflammation.

Sometimes, clinicians will assess how the patient responds to treatments. If psychosis is related to inflammation, it may improve with steroids, immunotherapy, or antiviral medications, which are typically ineffective for primary psychiatric disorders.

Specific Conditions to Consider

One condition that commonly mimics psychiatric disorders is autoimmune encephalitis, which can cause rapid onset psychosis, mood disturbances, and confusion. Testing for autoantibodies (like anti-NMDA receptor antibodies) can help in diagnosing this condition.

Infections such as encephalitis, meningitis, or even HIV/AIDS-related encephalopathy can cause psychiatric symptoms and should be ruled out.

MS can sometimes cause psychiatric symptoms like depression, anxiety, and psychosis due to demyelination in certain brain areas. This can be distinguished from primary psychotic disorders through MRI scans showing characteristic lesions.

Minimizing Misdiagnosis

A team approach involving both neurologists and psychiatrists can help ensure a more accurate diagnosis when symptoms overlap.

A careful review of a patient’s medical history, including autoimmune conditions, infections, or a history of trauma, can help guide clinicians toward the right diagnosis.

If symptoms of psychosis arise suddenly or change in an unusual manner, it can raise suspicion for a medical cause rather than a primary psychiatric disorder. The timeline of symptom onset, course, and any precipitating factors (like infections or medications) should be taken into account.

Ultimately, a comprehensive diagnostic workup is essential to distinguish between cerebral inflammation and psychotic disorders. Early recognition and treatment of conditions causing brain inflammation can prevent further complications and ensure that patients receive the most appropriate care.

Link to Endocrine Disorders:

If a cavernoma is located near or within areas of the brain involved in endocrine regulation, it could theoretically contribute to endocrine dysfunction. These areas include:

  1. Hypothalamus: The hypothalamus plays a central role in regulating the endocrine system via its control over the pituitary gland. A cavernoma in this region could disrupt hormone regulation and lead to a variety of endocrine disorders, such as:
    • Hypothalamic dysfunction (e.g., issues with temperature regulation, hunger, or thirst).
    • Dysregulation of pituitary hormone release (e.g., corticotropin, growth hormone, gonadotropins).
  2. Pituitary Gland: Cavernomas affecting or compressing the pituitary gland could lead to:
    • Hypopituitarism (reduced secretion of pituitary hormones).
    • Hyperprolactinemia (if pressure disrupts the inhibition of prolactin secretion).
    • Other imbalances depending on the specific hormones affected.
  3. Other Brain Regions with Secondary Effects:
    • Cavernomas causing significant intracranial pressure, hemorrhage, or secondary damage might indirectly affect endocrine function by impairing brain structures or pathways.

Rare but Documented Cases:

Although cavernomas are not commonly associated with endocrine disorders, there are reported cases of cavernomas near the hypothalamic-pituitary axis causing endocrine dysfunction. These cases emphasize the importance of the cavernoma’s sizelocation, and potential for bleeding or compression.

Symptoms to Monitor:

If an individual with a cavernoma develops symptoms suggestive of endocrine dysfunction, such as fatigue, unexplained weight changes, menstrual irregularities, or growth abnormalities, a detailed evaluation is warranted. This may include:

  • Hormonal blood tests.
  • High resolution imaging studies like MRI to assess the cavernoma’s location and size.

Conclusion:

While cavernomas do not inherently cause endocrine disorders, those located in or near endocrine-regulating brain regions (like the hypothalamus or pituitary gland) have the potential to disrupt hormonal function. It’s essential to work with a neurologist and endocrinologist to address these concerns.

Elizabeth has a recognised endocrine disorder which can lead to the effects below.  The two hormones (neurosteroids) allopregnanolone and pregnenolone may be affected by the disrupted endocrine function and the levels of these should be tested.  I consider it unlikely they have even considered this just like they have ignored the inflammatory markers that can cause limbic encephalitis.  

They ignore all of these studies even when they are written by their own people like Dr Shahpesandy.  Lots of people are detained on wards who would be able to be discharged if they were given hormonal supplements and anti-inflammatories.  Even Shahpesandy acknowledges that.   

Idiotic prescribing of anti-psychotics will in some cases make endocrine dysfunctions worse and benzos given as prnrapid tranquillisation can cause limbic inflammation. 

Low levels of allopregnanolone and pregnenolone can contribute to psychiatric symptoms, including mood disturbances and, in some cases, psychotic symptoms. These neurosteroids play essential roles in stabilizing mood, reducing anxiety, and modulating stress responses, and they can be impacted by certain endocrine disorders. Here’s a closer look at how these neurosteroids interact with mental health and endocrine function:

Allopregnanolone and Pregnenolone in Mental Health

Allopregnanolone is a potent positive modulator of GABA-A receptors, which are central to calming neural activity and reducing anxiety. It helps create a sense of stability in brain signaling, counteracting overstimulation and stress. Low allopregnanolone levels have been associated with anxiety disorders, depression, and increased stress sensitivity.

Pregnenolone serves as a precursor to other neurosteroids, including allopregnanolone, and has its own neuroprotective effects, including modulating NMDA receptors and potentially balancing dopamine and GABA neurotransmission. It has been studied in relation to schizophrenia and other psychotic disorders, as low pregnenolone levels may contribute to cognitive impairment and psychosis.

Potential for Psychotic Symptoms

While low allopregnanolone and pregnenolone levels alone aren’t generally thought to cause psychosis directly, a deficiency in these neurosteroids can create vulnerability to psychotic symptoms, especially in those with predispositions or other stressors.

Neurosteroids like pregnenolone have been linked to dopamine modulation. Dopamine dysregulation is a hallmark of psychosis, particularly in conditions like schizophrenia. Reduced pregnenolone levels may therefore impact dopamine balance and contribute to hallucinations, delusions, and thought disorders.

Some research also suggests that allopregnanolone may have a stabilizing effect on mood and perception; reduced levels might leave individuals more susceptible to stress, which in extreme cases could precipitate psychotic-like symptoms in vulnerable individuals.

Low Neurosteroid Levels and Endocrine Disorders

Adrenal insufficiency (e.g., Addison’s disease) and other endocrine disorders affecting adrenal or gonadal hormones can reduce the availability of precursors needed for neurosteroid synthesis. This can lead to low levels of allopregnanolone and pregnenolone.

Disorders of the hypothalamic-pituitary-adrenal (HPA) axis, including chronic stress and HPA axis dysregulation, can also result in altered neurosteroid production. Chronic stress suppresses the production of pregnenolone and can shift steroid synthesis toward stress hormones like cortisol rather than neurosteroids.

Polycystic Ovary Syndrome (PCOS) and other hormonal imbalances involving estrogen progesterone may disrupt neurosteroid synthesis, as these hormones are involved in the pathways that produce pregnenolone and allopregnanolone. Individuals with PCOS, for example, have an increased risk of mood disorders, which may be partly related to altered neurosteroid levels.

Clinical Implications and Potential Treatments

Understanding low neurosteroid levels as part of a broader endocrine issue can help target treatments more effectively. Hormone replacement therapy (HRT) or neurosteroid analogs are sometimes used to restore balance in individuals with chronic deficiencies.

Pregnenolone supplementation has shown potential as an adjunctive treatment for schizophrenia and mood disorders, with some studies suggesting it can help reduce symptoms of anxiety, cognitive deficits, and even mild psychosis.

Similarly, allopregnanolone analogs, like brexanolone (approved for postpartum depression), are being explored for their potential to help with other mood and anxiety disorders, offering a novel approach to neurosteroid-based therapy.

Summary

In conclusion, low levels of allopregnanolone and pregnenolone can contribute to psychiatric symptoms, including psychosis, especially in individuals with underlying vulnerability. These deficiencies are indeed symptomatic of certain endocrine disorders, especially those affecting adrenal or sex hormones. Addressing neurosteroid imbalances through hormone therapy, neurosteroid analogs, or other supportive measures can be beneficial in managing symptoms linked to these deficits.

It is appalling that when you as a carer ask for pathological tests you are up against huge bullying and then safeguarding against you. There is no safeguarding towards the vulnerable person who needs the extensive pathological tests or for anyone whose diagnosis is in doubt denied such tests for many years. I know I am not alone in this matter and in the Scrutiny Meeting Minutes it actually highlights a national problem that needs urgent changes as if ignoring the necessity for such tests as so many lives are put at risk.

There has been a Community -‘style’ review organised, a second one, the first held last year excluding everyone in the family. This time I have written to Ms Amanda Pritchard of NHS England out of concern as it would appear nothing has been arranged fairly and I see this as a safeguarding concern.

What is a CTR?

I printed off the Care and Treatment Review Code and Toolkit (A Guide for commissioners, panel members and people who provide support). I then read carefully through each Standard and Principle. I would recommend every parent and carer print off this guide and check that the CTR is being arranged correctly and that they are included.

The purpose of a CTR Code and Toolkit is to provide a solid framework for CTRs in order for them to be delivered to a consistently high standard across England. Unfortunately, I am critical in respect of the way the CTRs have been arranged. I feel what is the point of them if they are not arranged properly and inclusive of the family/carers. The CTR is focussed on people who have been, or may be about to be admitted to a specialist mental health/learning disability hospital either under the NHS or independent sector and the ‘spirit’ in which they are carried out is paramount and rooted in principles of human rights, person-centeredness and co-production.

KLOE

Does person need to be in hospital?

Is person receiving right care

Is person involved in their care and treatment?

Are the person’s health needs known and met?

Is the use of any medicine appropriate and safe?

Is there a clear, safe and proportionate approach to the way risk is assessed or managed?

Are any autism needs known and met?

Is there active planning for the future?

Are family and carers being listed to and involved?

Are person’s rights and freedoms being protected and upheld?

It is the fourth year of detention and prior to moving she was living peacefully in the community compliant with treatment. I cannot see any of these questions, standards of principles being included in a CTR style review which I think is a complete and utter waste of time and none of the panel appear to be completely independent as I have checked.

It is supposed to be Person Centred but instead of this it would appear that institutional plans overall everything. There is no communication and with family excluded it gives me no hope that this CTR will result in fairness towards Elizabeth taking her wishes into account which is why I have turned to NHS England – Amanda Pritchard to scrutinise what is going on. Elizabeth’s wish is to come home to her independent bungalow next to family home.

The Standards are really interesting:

1.1 – Person and their family will be given information about the CTR in advance. Oh no they haven’t!

1.5 – Panel will make time available to meet separately with person and their family carer. Nothing properly arranged here.

3.1 – Where concern person’s human rights may not be being upheld. This is most certainly the case all along.

3.2 – Advocacy – provision of independent advocacy. There is no trustworthy independent advocate whatsoever as the advocates employed by the Trust have breached confidentiality in a capacity assessment on “Whether or not to have any Contact with Mother”.

3.3 – CTR will ask about legal framework for purpose eg at tribunal. THERE IS NO LEGAL REPRESENTATIVE EVEN THOUGH ELIZABETH HAS TRIED SEVERAL TIMES TO PHONE SOLICITORS – HER PHONE TAKEN AWAY AND HELD SECURELY, IN BREACH OF ART 8 HRA AND ALL CALLS SUPERVISED AND RECEPTION OF HER PHONE IS NOT GOOD. IT WOULD SEEM HER RIGHTS TO LEGAL PRIVILEGE ARE BEING OBSTRUCTED AS CALLS ARE SUPERVISED AND NO PRIVACY ACCORDING TO ELIZABETH.

4.1 CTR should take a day to complete. So in that case why have I just been invited for half an hr?

4.3 People supporting person should be at the CTR inc LA So could that be why I am only invited for just half an hour I wonder?

4.4 Physical health and general wellbeing. Private scans I paid for have indicated an anomaly (possible lesion) in the right hemisphere of the brain in an area where the meso-limbic pathway is located.

This lesion could be seen using the NHS approved DICOM (Digital Imaging and Communications in Medicine) an internationally recognized standard for storing, transmitting, and viewing medical imaging data, including MRI brain scans. The NHS and many healthcare systems worldwide rely on DICOM-compliant software to ensure interoperability between imaging devices and systems.

In Elizabeth’s scan the apparent lesion could be observed in three planes and triangulated to an exact position in the brain. The anomaly (lesion) appeared in the Axial Plane (Top to Bottom):

Also called the transverse plane, this section runs horizontally through the body, dividing it into superior (top) and inferior (bottom) sections.

The image was also visible in the Coronal Plane (Front to Back). This plane runs vertically, dividing the body into anterior (front) and posterior (back) sections.

And in the Sagittal Plane (Side to Side) This vertical plane divides the body into left and right sections.

A mid-sagittal plane runs exactly in the middle, splitting the body into equal left and right halves. A para-sagittal plane is offset from the midline.

The potential lesion is found at the right of the interhemispheric fissure in the sagittal plane, and of the superior in the axial plane and slightly to the anterior on the coronal plane

DICOM ensures that imaging data from MRI, CT, X-rays, and other modalities can be stored, transmitted, and viewed across various systems and software platforms.

It is widely adopted in healthcare, including within the NHS, for handling medical images.

The NHS uses a range of DICOM-compliant software and systems for viewing and analysing MRI scans. These include Picture Archiving and Communication Systems (PACS) and specialized imaging software.

Examples of DICOM-compliant software used in the NHS might include systems like GE Healthcare’s Centricity, Siemens Syngo.via, or Philips IntelliSpace Portal, among others. These are integrated with hospital IT infrastructure for seamless operation.

Under the circumstances it is necessary to re-examine this lesion under a higher resolution scanner such as the TESLA 3 or better still NEG TESLA 7 Phillips wide aperture scanner as this will improve acuity of image and reduce stress induced artifacts on the scan.

A brain lesion in the limbic pathway can potentially contribute to the development of psychotic symptoms. The limbic system, which includes structures such as the hippocampus, amygdala, thalamus, hypothalamus, and parts of the prefrontal cortex, plays a critical role in regulating emotions, memory, and behaviour. Damage or dysfunction in this system can disrupt these processes and lead to symptoms often associated with psychosis, such as hallucinations, delusions, or significant disturbances in thought and emotion.

There are a number of mechanisms linking limbic lesions and psychosis

Disrupted Emotional Regulation:

Damage to the amygdala or its connections can lead to abnormalities in emotional processing, potentially contributing to the paranoia or heightened emotional responses often seen in psychosis.

Impaired Memory and Cognitive Integration:

Lesions in the hippocampus or associated structures may interfere with the proper integration of memories and reality, possibly leading to delusional thinking.

Altered Dopaminergic Pathways:

The limbic system is closely connected with dopaminergic pathways, particularly the mesolimbic pathway. Lesions could dysregulate dopamine activity, which is strongly implicated in psychotic disorders like schizophrenia.

Disconnection Syndromes:

Lesions disrupting connectivity between the limbic system and prefrontal cortex could impair judgment and reality testing, leading to psychotic symptoms.

Neuroinflammation or Secondary Effects:

Lesions causing neuroinflammation or altering the surrounding brain environment can affect nearby circuits and neurotransmitter systems involved in psychosis.

Clinical Considerations:

Location of Lesion: The specific area and extent of the damage are critical in determining the likelihood and type of symptoms.

Co-occurring Factors: Pre-existing vulnerabilities, such as genetic predisposition, previous psychiatric history, or concurrent neurochemical imbalances, may increase the risk of psychosis.

Symptom Presentation: Depending on the nature of the lesion, psychotic symptoms might manifest in ways distinct from primary psychiatric disorders like schizophrenia.

While not every lesion in the limbic pathway will result in psychotic symptoms, there is a clear neurobiological basis for how damage to this area could contribute to psychosis. Such cases would require multidisciplinary management, combining neurology, psychiatry, and possibly neuropsychology, to address both the underlying neurological damage and the resulting psychiatric symptoms

So how on earth can a CTR ‘style’ review properly take into account all of this in a short space of time? I will ask this question to Ms Pritchard as it is most important to do these tests properly under the correct scanner.

5.10 CTR to question whether person’s care and treatment could be delivered in a non hospital setting.

YES – HOME! – How comes it is so difficult for this area to provide what was previously given in the former area. In that case then it would be cheaper to offer the private physical healthcare in the community and I as mother and carer could ensure attendance at all appointments which will save a lot of money. So much has been unnecessarily spent on wrong environments of care so far. Home is the right environment and there is so much scope for care to be provided in the home environment too unlike before.

6.3 Commissioner to write a report that all involved can understand and to ensure FAMILY AND CARERS AND OTHERS WHO NEED A COPY GET THIS WITHIN TWO WEEKS.

I am still waiting for the last report from last year and minutes. Where are these documents?

I have been invited at Elizabeth’s request to attend the CTR so I should be invited at 9.00 am until 5.00 pm not just for half an hour. This is ludicrous.

The last CTR was held in a secretive manner excluding all family and therefore nothing was done correctly and then according to Elizabeth two women approached her to tell her she was to stay where she was on the ward. No way was this done properly.

I particularly wish to be included in SECTION 7.

Section 7 gives guidance on exactly how things should be organised. The time allocated is still not enough time from between 10.30 am – 3.00 pm when the actual meeting started at 9.30 am. It says very clearly “meet with person AND THEIR FAMILY”.

A new advocate needs appointing because the current firm of advocates have breached confidentiality and I have had to complain quite rightly so. I am still waiting for my response in this respect.

According to the example the CTR ends at 5.30 pm. Especially important are the following points:

Am I safe

What is my current care like

Is there a plan for my future

Do I need to be in hosplital for my care and treatment.

The Expert by Experience is NOT independent.

There should be someone independent of the Trust as the the advocate like there was in the former area where the CTR was done correctly.

There is no mention of the Neurologist or attendance by an Endocrinologist and this is extremely wrong. This means that a despite the Transforming Care Minutes no consideration is being given to physical healthcare.

To exclude a parent and carer is extremely wrong and there is no better Expert of Opinion than a parent and carer.

If parent and carer has serious concerns on physical health as well as health and safety on treatment and the way capacity assessments have undertaken as well as safeguarding and risk assessments, then these concerns should be taken on board and taken seriously instead of being ignored. This is why the CTR should be externally scrutinised as I see this as a safeguarding concern where person, their carers and parents are dismissed like rubbish when they have valid concerns and also when there are any doubts on physical health backed by scans going back to 2007. Nothing should be left to chance if there are seizures and other evident endocrine disorders. Every person should be allowed a second opinion under Martha’s Rule and just because they are held under the MHA is no excuse to ignore the urgency of such tests. The problem is that when you as a carer dare to question and ask for pathological tests then you get backlash and bullying.

In the former area Elizabeth was properly supported for the CTR and for the first time ever before we moved they were taking her physical health very seriously. All appointments were cancelled upon moving and instead, priority was to get rid of me as the NR and try and revoke the POA as they are trying to do right now. The CTR informer area was cancelled three times before it was finally arranged correctly but Elizabeth was fortunate to have the support of NAS and Access Charity who ensured there was no cheating with the CTR. Here in Lincolnshire she has no external trustworthy advocate and therefore nothing will be done fairly like last time – a waste of time and with family excluded and no legal representation I can see absolutely nothing good in this CTR ‘style’ Review. In my opinion it is a complete and utter waste of time and geared not towards the vulnerable person’s wishes but whatever Trust and Council have contrive. I do not like the way they have tried to take away her autonomy by so many capacity assessments done incorrectly. The CTR, if arranged properly, would have been a great opportunity to communicate and discuss and resolve concerns on both sides but I see this as an underhand exercise where decisions have already been made in advance and all I want to see as a mother and carer is for my daughter’s wishes to be heard and acted upon even if it is on a trial basis in terms of her coming home and that is her wish – TO COME HOME AND TO SEE HER CAT! and be close to her family. There are plenty of opportunities in the local community for her to do everything on offer under a hospital which is not a home!.

Section 9 is a tick box check list that the Chair should ensure is based on the principles and standards laid out in the CTR Policy which is clearly is not.

Section 10 is about Discharge steps and standards. It mentions “where people are assessed as lacking capacity” “Best Interest process”. That is what they have been doing all along with Lincolnshire County Council involved from the beginning and their BI assessors but today there was no doubt that Elizabeth had capacity and even when she was drugged to the hilt at a previous hospital her wishes are still the same and that is TO COME HOME.

I have not even had a carers assessment since coming to this area. In respect of the person concerned this CTR is to ensure “someone will look at my living arrangements and make sure I do not lose my housing or right to benefits while in hospital” That somebody is ME! as her Attorney “who I would like to live with? What I want from my life? She wants to come home but certain others are trying to make out I am a bad person, this is commonplace and experienced by many carers – they try to collectively say that the relationship is bad, put safeguarding in place again you and just gang up and ruin your life by trying to label you as a “perpetrator and abuser” which is why the safeguarding and risk assessments need proper external scrutinising and safeguarding works BOTH WAYS!

I remember the discharge from former area from Wales to Northampton to a care home where practically all money was taken leaving just £30 pw and no support on managing financially and I have proof that this care home run by social services, rated good allowed her to go without food at weekends. Absolutely appalling which is why I have tried to provide a home for life – an independent detached bungalow for her. None of the care institutions in the community have worked and the urban environment of London was not good so it is completely different here. Some residents in these care institutions can be loud and any noise is very triggering for Elizabeth so a bungalow in a peaceful location is what is needed and the location of home is extremely nice and suitable. I know she could settle down in this area and that there would be no problems.

TRANSFORMING CARE

I am looking at the minutes held in July 2024 of the ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE and this meeting is attended by the commissioner of the CTR and same panel as the CTR. How interesting, it states:

“Many older adults MAY HAVE BEEN MISDIAGNOSED WITH MENTAL HEALTH ISSUES FOR DECADES. Data was being gathered on these individuals, especially those with learning disabilities who tend to be identified earlier.” This is a huge safeguarding issue yet I as Mother and carer who wishes for pathological tests done on abnormal findings on scans going back to 2007 am being bullied right now – that is how I see it. These minutes have identified huge nationwide safeguarding issues that NHS England need to address at each and every area. I have now identified further safeguarding issues on how CTRs are carried out incorrectly, not taking into account all the standards and principles and a CTR should be concerned with physical health and underlying conditions which are not catered for under the MHA. Properly arranged CTRs not CTR ‘style’ reviews are needed, with independent panels and properly arranged and organised like that in the former area was.

These minutes identify a serious national issue apart from this with long waiting lists for neurodevelopmental services. Waiting times for diagnosis were up to a year. Well in Elizabeth’s case it is coming up to 4 years under Lincolnshire and back to 2007 in former area who refused to look into matters properly so I as Attorney and Mother had to pay privately to confirm everything. When you advise the outcome of such private tests under the MH they are just ignored under the NHS.

“Diagnostic processes involved multiple professionals and efforts were being made to streamline this process to reduce waiting times. ” THIS IS NOT GOOD ENOUGH as lives are being put at risk.

NO autism respite provision. However Elizabeth is not being recognised as someone with autism. It is however recognised within these minutes that girls and women often masked their symptoms leading to late diagnosis.

Housing needed to be addressed. Well I have addressed that issue with a detached bungalow. All that would be needed is shared lives carers or young student professionals to knock on the door like I provided privately in a scheme in the community once. This community though is completely different to London and totally caring with lots going on and work opportunities etc.

This is so true: ONE MEASURE NOT ACHIEVING TARGET IS REGARDING CARERS SUPPORTED IN LAST 12 MONTHS. I can only go by how I have been treated and would regard this as bullying. To ban you from visiting for months on end, to take away the phone, to try to isolate and stop contact by way of capacity assessment backed by her so called advocates is very sad and that is because I am asking for pathological tests that are urgently needed but being ignored.

ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE AGENDA WEDNESDAY, 4 SEPTEMBER 2024.

I have the previous minutes also but note nothing has really changed from the last minutes and now I am seeing the names of those involved and the attendees.

1
Apologies for Absence/Replacement Members
2
Declarations of Members’ Interests
3
Minutes of the meeting held on 24 July 2024
5 – 8
4
Announcements/Updates
5
Lincolnshire Safeguarding Adults Board Update
(To receive a report from Justin Hackney, Assistant Director – Adult Care and Community Wellbeing, and Richard Proctor, Independent Chair LSAB, which provides the Committee with an update on the current position of key areas of work being undertaken within the Lincolnshire Safeguarding Adults Board (LSAB))

9 – 14
6
Service Level Performance against the Corporate Performance Framework 2024-25 Quarter 1
(To recive a report from Caroline Jackson, Head of Corporate Performance, which summarises the Adult Care and Community Wellbeing Service Level Performance against the Success Framework 2024-25 for Quarter 1)
15 – 38
7
Adults and Community Wellbeing Scrutiny Committee Work Programme
(To receive a report by Simon Evans, Health Scrutiny Officer, which invites the Committee to consider its work programme)
39 – 46

Democratic Services Officer Contact Details
Name:
Tom Crofts
Direct Dial
01522 552334
E Mail Address
thomas.crofts@lincolnshire.gov.uk

Please note: for more information about any of the following please contact the Democratic Services Officer responsible for servicing this meeting

Business of the meeting

Any special arrangements
Contact details set out above.
Please note: This meeting will be broadcast live on the internet and access can be sought by accessing Agenda for Adults and Community Wellbeing Scrutiny Committee on Wednesday, 4th September, 2024, 10.00 am (moderngov.co.uk)
All papers for council meetings are available on: https://www.lincolnshire.gov.uk/council-business/search-committee-records

12 ALL AGE AUTISM STRATEGY
Consideration was given to a report and presentation introduced by Justin Hackney,
Assistant Director – Adult Care and Community Wellbeing, and presented by Catherine Keay,
Head of Commissioning for Mental Health, Learning Disabilities and Autism – NHS
Lincolnshire Integrated Care Board, which provided the Committee with an overview of
Lincolnshire’s All Age Autism Strategy. The Committee were fully guided through the
predation at appendix A of the report.
Consideration was given to the report and during the discussion the following points were
recorded:

Many older adults may have been misdiagnosed with mental health issues for
decades. Data was being gathered on these individuals, especially those with learning
disabilities, who tend to be identified earlier.

The Integrated Care Board (ICB) funded services for 16-18 year olds, but there was a
national issue with long waiting lists for neurodevelopmental services. Waiting times
for diagnosis were up to a year, locally, and up to seven years elsewhere.

Autism Champions were being rolled out across various sectors to promote reasonable
adjustments. The goal was to have these champions in every sector, including shops
and local authorities, to create autism-friendly environments.
 The Virtual Autism Hub, started in February 2024. It was involved in the children’s
diagnostic pathways and provided grants to support groups, especially in
underserved areas.

Diagnostic processes involved multiple professionals, and efforts were being made to
streamline this process to reduce waiting times.

Many autistic individuals were academically high achievers but struggled with stress
and anxiety. The Autism Hub aimed to provide support across Lincolnshire to help
these individuals develop everyday functional living skills.

There was no specialised autism respite provision. Most autistic individuals needing
social care support fell under mental health services. Creative solutions, like
organising hotel stays with care support, were being explored. The Council was also
working on gap analysis to identify needs for respite care and other services.

Increased awareness of autism had led to more referrals overall. However, girls and
women often masked their symptoms, leading to later diagnoses. Efforts were being
made to raise awareness about different presentations of autism.

Housing for autistic individuals, especially those without learning disabilities, needed
to be addressed. Ground floor accommodations were often required due to safety
concerns. The joint accommodation strategy group was working on specific needs
and bespoke tender processes for care providers.

Page 6
3
ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE 24 JULY 2024
 Efforts were being made to improve data collection and understanding of prevalence
and future demand.
 There was a significant number of unemployed autistic adults. Efforts were being
made to support these individuals into employment, but there was also a need to
educate employers about hiring autistic individuals.
 There were disparities in the availability of support across different areas, with more
resources concentrated in Lincoln. Efforts were being made to address these
disparities and provide more equitable support.
RESOLVED

  1. That the report and presentation be noted, and the Committee’s support for the
    Lincolnshire All-Age Autism strategy 2023-28 be recorded.
  2. That an update on actions and improvements be reported to the Committee next year.
    13 SERVICE LEVEL PERFORMANCE AGAINST THE CORPORATE PERFORMANCE
    FRAMEWORK 2023-24 QUARTER 4
    Consideration was given to a report by Caroline Jackson, Head of Corporate Performance,
    which invited the Committee to consider the Service Level Performance against the
    Corporate Performance Framework 2023-24 Quarter 4. It was reported that 95% of
    measures were achieving or exceeding targets. One measure that was not achieving target –
    regarding carers supported in the last 12 months. It was recognised that this target was
    giving flawed indication and was scheduled needed to be reviewed in the 2024-25
    framework.
    Consideration was given to the report and during the discussion the following points were
    recorded:
     The Committee recognised that Lincolnshire was performing well when compared to
    statistical neighbours; however, improvements and progress should nonetheless
    continue to be made.
     Assurances from the Care Quality Commission were welcomed.
     It was understood that new standardised formatting for presenting data needed to be
    implemented so as to ensure effective benchmarking with other authorities.
     Client-level data was growing as a resource, which presented opportunities to inform
    and improve service delivery via a more sophisticated interrogation of data.
     The 2024-25 framework remained largely unchanged from the previous version. The
    following changes had been made:
    o PI31 – definitions had been revised.
    o PI111 – the target had been increased due to the expected expansion of the
    service.
    o PI59 – the target had been reset to give a better reflection of the service and
    meaningful intent.
    o Three additional contextual measures had been added:
    Page 7
    4
    ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE
    24 JULY 2024
     PI194 – Personal wellbeing estimates – life satisfaction; happy;
    worthwhile.
     PI195 – Annual concentration of air pollution, fine particulate matter.
     PI196 – Percentage of households in an area that experience fuel
    poverty.
     Contextual measures were measured by questionnaires and survey but concerned
    subjective matters. Trends and trajectories could be garnered from these
    measurements to inform the direction of the service.
     Matters such as measuring air quality had an overlap between the two tiers of local
    government in Lincolnshire.
    RESOLVED
  3. That the report be noted, and the Committee’s satisfaction be recorded.
  4. That the 2024-25 Adult Care and Community Wellbeing Service Level Performance
    Indicators and Targets be supported.
    14 ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE – WORK
    PROGRAMME

    Consideration was given to a report by Simon Evans, Health Scrutiny Officer, which invited
    the Committee to consider its planned work programme.
    No changes had been made since publication; however, it was suggested that the following
    two items be moved from the September meeting on to October:
     Day Services Update
     Director of Public Health Annual Report 2023: Follow Up
    RESOLVED
  5. That the report be noted.
  6. That the above changes be made to the work programme.
    The meeting closed at 11.30 am
    Page

Elizabeth has asked many times to work in the hospital cafe but still she has not been given the opportunity. In this area there are many opportunities with the local college and hub for autism although Elizabeth’s condition has not been identified as Autism and she is being treated as a MH patient. She is now being taken out on group leave which she enjoys however I would compare the Trust to like a religious cult who restrict and deny family contact to any parent who dares to challenge and it is not the right thing to do when that family member might have extremely valid concerns.

I do not see any members of the public invited to this scrutiny meeting but I remember once when I turned up at the former area’s scrutiny wellbeing meeting I was told it was not open to the public. I had even offered to do the minutes. Doing the minutes accurately is what is needed which is why I should be invited ALL DAY to the CTR. I wonder what the response will be if I turned up to this Council’s Scrutiny Meeting.

Now having read these minutes I think the best thing is to do the entire safeguarding openly and transparently especially as regards why I am supervised 2-1 after all this time which is putting a huge risk on the ward and their staffing levels. Safeguarding works both ways and should not just be done on a parent and carer in such an underhand manner.

The CTR is arranged for the 30th of January and I have written to NHS England about this and also asked for my invitation to be all day and for the whole thing to be rearranged properly with a completely independent panel.

The Commissioner/Chair along with another Safeguarding Professional based under the Primary Care Trust are giving the most interesting talks to Lawyers on “Challenging Families and Best Interests” How to manage challenging families!”

In answer to that – there would be no such a thing as a challenging parent and carer as if they were listened to, included and treated with respect then this would enable Trusts to work effectively in determining what is in the best interests because after all, a parent/carer is the only EXPERT BY EXPERIENCE.

I will never forget the comments of the Independent Chair of the CTR done correctly under former area. He said “The whole thing stinks!” How true! However the former area were going to send Elizabeth to the Priory in Hemel Hempstead but instead her wishes were listened to and she was allowed home. Unfortunately it is like going backwards in this area as there is no communication and families/carers are treated as though they are invisible – if this is how I am being treated there must be others. The minutes of these scrutiny meetings look like they contain same matters which have just been copied and pasted but these people are not properly safeguarding my daughter who urgently needs pathological tests after so many years of neglect from former area and current where we had hoped so much for a fresh start. Instead, it has been one hell of a nightmare and still ongoing after so very long but now disturbingly with all the attempts to revoke the POA yet again there is much going on behind everyone’s backs right now and no answer from the Public Guardian Office as yet. I will keep you all informed and these meeting should include parents and carers after all it is a scrutiny meeting.

Policy Critique: Form OPG130 and the Risk of Procedural Injustice in the Safeguarding Process

Executive Summary

Form OPG130, issued by the Office of the Public Guardian (OPG), is intended as a tool to report concerns about the conduct of an attorney or deputy acting under a Lasting Power of Attorney (LPA) or Enduring Power of Attorney (EPA). While the objective of safeguarding vulnerable donors is legitimate and necessary, the design and operational use of this form raise significant concerns about procedural fairness, the presumption of innocence, and the potential for reputational and legal harm to individuals accused of abuse without evidence.

This critique highlights key flaws in the current policy underpinning Form OPG130, particularly the use of pre-determined abuse categories and the ease with which an individual may be named as a perpetrator without recourse to immediate defence or redress. The form’s structure and implementation risk facilitating unsubstantiated allegations, undermining natural justice, and ultimately diminishing trust in the safeguarding framework.

Overview of Form OPG130

Form OPG130 allows any person to report concerns about a donor’s welfare or decision-making arrangements. The form includes:

  • A list of pre-defined abuse categories (e.g., financial, physical, emotional)
  • Fields for describing incidents or concerns
  • A section to name the person(s) alleged to be responsible

The OPG uses this information to determine whether further investigation or referral is warranted. However, the form’s design and handling processes merit critical examination.

Pre-Determined Abuse Categories: Oversimplification and Presumption

The form presents a tick-box list of abuse types without requiring the complainant to demonstrate a credible threshold of evidence. These categories—while reflective of genuine safeguarding concerns—are problematic in policy terms due to:

  • Subjectivity: Terms like “emotional abuse” or “neglect” lack clear, uniform definitions in lay usage and may be applied inconsistently.
  • Ease of allegation: The form allows serious allegations to be made without scrutiny, inadvertently lowering the bar for potentially harmful or false claims.
  • Implied validation: By embedding abuse categories in the form’s structure, the OPG may be seen to lend credence to claims at the point of receipt, regardless of merit.

From a policy design standpoint, this introduces a presumption that once an allegation is made, it holds sufficient weight to prompt intervention—even absent corroborating evidence.

Identification of ‘Perpetrator’: Accusation Without Defence

The form explicitly invites the complainant to name an individual they believe to be responsible for the alleged abuse. Critically:

  • No evidentiary threshold is required at the time of submission.
  • The accused is not notified at this early stage and therefore lacks the opportunity to respond in real time.
  • The allegation is effectively recorded in an official safeguarding process, potentially triggering investigations and reputational consequences.

This policy design runs counter to fundamental principles of fairness and accountability. It lacks procedural balance and undermines the presumption of innocence, creating a high risk of injustice to those accused.

Absence of Safeguards Against Malicious or Misguided Reporting

There is currently no clear mechanism within Form OPG130 to:

  • Vet the credibility or motivation of the complainant at the initial reporting stage;
  • Require declarations of truthfulness under penalty of law;
  • Penalise false or malicious reports.

This gap in policy fails to protect individuals from being targeted as part of family disputes, inheritance conflicts, or personal grievances unrelated to actual abuse. The absence of meaningful safeguards creates a significant risk of misuse.

Disproportionate Consequences and Asymmetric Rights

The policy framework surrounding Form OPG130 allows potentially severe consequences to flow from unsubstantiated allegations:

  • Suspension of powers of attorney
  • Disruption of care arrangements
  • Reputational and emotional harm
  • Referrals to safeguarding boards or police

In contrast, the accused has no structured pathway to rebut or contextualise the allegation at the outset. The process is asymmetrical, offering protections to the complainant but none to the accused. This undermines legal norms such as:

  • Audi alteram partem – the right to be heard
  • Equality of arms in quasi-judicial processes
  • Proportionality of state intervention

From a public policy perspective, this imbalance erodes trust in safeguarding systems and may deter capable attorneys from continuing in their roles.

Policy Recommendations

To ensure that safeguarding mechanisms remain fair, effective, and accountable, the following reforms to Form OPG130 and its associated procedures are recommended:

Evidentiary Threshold

Require complainants to provide specific supporting information and, where possible, documentary evidence to substantiate allegations.

Declaratory Statement

Include a formal declaration that allegations are true to the best of the complainant’s knowledge, with a warning about the legal consequences of false reporting.

Initial Credibility Screening

Introduce a triage mechanism within the OPG to assess the plausibility and seriousness of allegations before any formal investigative steps are taken.

Right of Reply

Establish a structured process for notifying accused individuals and offering a prompt opportunity to respond before further action is initiated, except in urgent risk cases.

Transparency and Record-Keeping

Ensure that accused individuals are informed of any allegations retained in official records and have access to a clear process for rectification or removal of unfounded accusations.

Guidance and Training

Provide clear public guidance on what constitutes different types of abuse and the threshold for reporting, to reduce misunderstanding and inappropriate referrals.

Form OPG130, as currently implemented, lacks adequate safeguards to prevent misuse and fails to uphold key principles of natural justice. While protecting vulnerable individuals is a core function of the Office of the Public Guardian, this must not come at the expense of procedural fairness or the rights of those accused.

A rebalancing of the policy framework is urgently required to preserve the integrity of the safeguarding process, protect all parties involved, and ensure public confidence in the operation of powers of attorney.

Critical Analysis of Form OPG130: Concerns About a Donor (LPA/EPA) – Focus on Pre-Determined Abuse Categories and Injustice Toward the Accused

Introduction

Form OPG130, issued by the Office of the Public Guardian (OPG) in the United Kingdom, is designed to allow concerned individuals to report suspicions of abuse regarding a donor under a Lasting Power of Attorney (LPA) or an Enduring Power of Attorney (EPA). While the safeguarding of vulnerable individuals is a crucial function of the OPG, the design and structure of OPG130—particularly the use of pre-determined abuse categories and the approach to identifying alleged perpetrators—raises significant concerns about procedural fairness, natural justice, and the rights of the accused.

Pre-Determined Categories: Presumption of Guilt

The form lists predefined categories of abuse such as:

  • Financial abuse
  • Physical abuse
  • Emotional or psychological abuse
  • Neglect
  • Sexual abuse

These categories, while reflecting real and serious types of harm, may lead to unintended consequences when placed on a reporting form without context or an evidentiary requirement. The issue lies not in their inclusion per se, but in how they are presented:

  • Tick-box simplicity: The form allows allegations to be made simply by ticking boxes. There is often no requirement for substantial evidence, corroboration, or detailed narrative beyond what the reporter chooses to provide.
  • Ambiguity and subjectivity: Terms like “emotional abuse” or “neglect” can be highly subjective and open to interpretation. In family or care contexts, particularly those involving complex dynamics or disagreements over care decisions, such labels can be misused or misunderstood.

By structuring the form this way, the OPG risks encouraging speculative or malicious allegations under the guise of safeguarding, with little scrutiny at the reporting stage.

Identification of the ‘Perpetrator’ Without Evidence

Perhaps the most troubling aspect of the form is the section that invites the reporter to name the “person responsible for the abuse”—effectively labelling an individual as a perpetrator before any investigation has taken place.

  • No burden of proof: The form does not ask the reporter to present evidence beyond their own account. There is no legal threshold to meet before someone’s name is recorded as a suspected abuser.
  • Impact on the accused: Once named, a person can be subjected to investigations, reputational damage, and distress—all before they are even notified of the allegation, let alone given a chance to respond.
  • No right to immediate response: The accused does not have automatic recourse to challenge the allegation at the point of submission. The OPG may begin inquiries or refer matters to social services or police without the accused having the opportunity to correct inaccuracies or defend themselves.

This dynamic can result in serious miscarriages of justice, particularly where allegations are made maliciously, based on misunderstandings, or as a result of personal disputes.

Injustice and the Erosion of Natural Justice

At the heart of the criticism is a fundamental lack of procedural fairness—commonly referred to as natural justice. The principles of natural justice include:

  • The right to a fair hearing
  • The right to be informed of allegations
  • The right to respond to and challenge those allegations
  • The right to an impartial investigation

Form OPG130, in its current structure, undermines these principles:

  • No balancing mechanism: There is no equivalent form or process for an accused person to formally respond at the same stage. The investigative process may not include or prioritize the perspective of the accused until later—if at all.
  • Risk of disproportionate responses: The mere presence of an allegation may trigger significant interventions, such as suspension of powers or referral to authorities, regardless of whether the claims are substantiated.
  • No penalties for false allegations: There appears to be no clear warning on the form about the consequences of making false or malicious accusations, which would serve as a deterrent to misuse.

Potential for Abuse of the Safeguarding Process

Ironically, a form intended to prevent abuse may itself be vulnerable to being used abusively. Disputes over finances, inheritance, family dynamics, or care decisions may prompt individuals to use the form as a weapon—especially when there is no immediate scrutiny of their motives or evidence.

This creates a paradoxical situation:

  • The vulnerable party may become more vulnerable: Disruption caused by false allegations can destabilize care arrangements or damage trust between the donor and attorney.
  • The accused may suffer irreversible harm: Reputational damage and emotional distress can occur even if the allegations are ultimately dismissed.

While the safeguarding of donors under LPAs and EPAs is undeniably important, Form OPG130 in its current form presents serious concerns about fairness and justice. The use of pre-determined categories of abuse and the ease with which an individual can be labelled a perpetrator without evidence or recourse undermines the principles of due process and opens the door to misuse.

To align better with principles of justice and the rights of all parties involved, the OPG should consider reforms such as:

  • Introducing a requirement for supporting evidence
  • Ensuring allegations are screened for credibility before action
  • Providing an immediate and equal opportunity for the accused to respond
  • Including clear warnings about the consequences of false reporting

Safeguarding systems must protect the vulnerable, but they must also guard against the abuse of the process itself. Without a balance, the very tools designed to uphold justice may become instruments of injustice.

Here is some very important case law:

If anyone is being threatened with an annulment of  Lasting Power of Attorney by local authority social services the case where the CoP refused such an application is as follows:

Re C (Attorney) [2018] EWCOP 42

  • The applicant must show that the patient lacked capacity at the time the power was granted.
  • The applicant must show with sufficient evidence that the holder of the power is using undue influence.

In the above case they failed.

YET ANOTHER INVESTIGATION BY THE PUBLIC GUARDIAN OFFICE COMMENCED 6 NOVEMBER 2024

On the 6th November 2024 I was contacted by the Public Guardian Office who had received serious allegations against myself and another Attorney that we were mismanaging the POA and I am assuming an OPG130 form had been submitted. This is the second time we have been under investigation but this time for everything including finances, whereas before it was just health and welfare.

Elizabeth was taken away in September 2021 in an ambulance when I had tried to get continuation of “medication” in the community and to this day she remains held on a ward. All sorts of allegations were levied that I had tried to stop treatment etc. For a good part of at least three years of hell, Elizabeth has been held like a restricted prisoner and my visits/phone calls very much restricted. The first Public Guardian Office investigation took place in 2022 and concluded in our favour. An investigation normally takes 14 weeks but in the current investigation so far no response. This impacts upon your life, your health and wellbeing and when done secretly behind your back in this way I have no doubt the advantage would go to the social services whoever is involved to give them full control of everything needed to finance a proposed care home and this is what has been going on since our move when the family have provided a bungalow to bring her close to everyone as per her wishes.

For anyone else up against this kind of malicious process that I can only describe as “bullying” and “intimidation” I would advise taking a close look at this OPG 130 form social services may use to report an Attorney in cases where they want to take control of everything. For some cases this may be justified however in others, it is simply used for the purposes of control and placing a vulnerable person into yet more restrictive care with false promises of “freedom” against their wishes. If found to have no capacity it is easy for this to happen however in other cases there might be “fluctuating capacity”. This I have no doubt is done when normal procedures cannot be applied. This would authorise full control of everything, family savings, Trust Funds, family property to be spent on a care home. The Public Guardian Office then has the duty to investigate based on those allegations made against you by so called “professionals” you have never even met. So the form itself is very simple on the second page capacity is mentioned. That has to be determined in a Public Guardian CoP case. Since the day we moved, the team have tried to allege Elizabeth has NO CAPACITY – her medication at one point was raised to double at the time of the 2022 assessment. Even in light of this, Elizabeth still maintained capacity. I believe the Public Guardian Office have sent an assessor to carry out the capacity assessment so Elizabeth has advised us. She said a man carrying out the assessment asked her where she wanted to live and she said “home”. Today during my heavily supervised 2-1 restricted visit, Elizabeth again showed her capacity to the full and great memory of the former area in front of the young supervisors. I have no idea of the outcome of this latest 9th capacity assessment. The most disturbing thing is on Page 3: “Date alleged abuse happened” and “names of alleged perpetrators”, Local Authority name and address and allocated social worker details.

All of this has been going on behind our backs instead of a section 42 meeting which I have asked for many times before to discuss MY CONCERNS. Elizabeth is now in a rehab unit where she moved from Castle Ward stating “anything is better than this place“. Prior to that Elizabeth was unsure because it appeared to be the same restrictive “care”. It has become clear that the safeguarding is solely against me but what is bad is that no-one will give you a reason and one that complies with the MHA Code of Conduct which is 11:14-16 and I do not come into any of the categories listed.

After all this time there is still no response from the Public Guardian Office and I have written to them tonight because I have decided I would like the entire investigation to be completely open and transparent. I thought that was the whole idea of safeguarding. The more open and transparent the better as you should have the right to reply BEFORE any such investigations take place that affect your whole life as in my case.

I then contacted the Public Guardian Office to ask the following questions and raise the following points but when I asked who was the social services team behind this I was told it was confidential and could not be disclosed just like an MDT where everyone backs one another but there is not room for 30 signatures on this form – there is one room for ONE SOCIAL WORKER to sign.

Why not disclose who is behind matters and what the concerns are and why should it be confidential when it is all about me in that case, that is assuming such form was even properly submitted to the CoP but here is what to do if any other parents and carers are affected:

A person who is referred to as a “perpetrator” or “abuser” on a form such as the OPG130 (which is typically used in the context of applications for a deputyship order under the Mental Capacity Act 2005) would generally have the legal right to challenge such a definition, particularly if it is inaccurate, defamatory, or unjust. Below is an explanation of the legal right to challenge such a definition, along with the relevant legal authorities.

Right to Challenge the Definition

  1. Right to Fairness and Accuracy (Article 6 ECHR)
    The right to a fair trial and due process is enshrined in Article 6 of the European Convention on Human Rights (ECHR), which applies in the UK. If someone is described as a “perpetrator” or “abuser” in any legal proceeding, that person has a right to challenge such an accusation or label if it is inaccurate, misleading, or detrimental to their legal standing or reputation. The right to a fair hearing includes the opportunity to challenge evidence or allegations made against you, especially when it involves potentially damaging labels or findings.
  2. Defamation and Reputation Protection
    If the term “perpetrator” or “abuser” is used in a way that can harm someone’s reputation, they may have a claim under defamation law. Under UK law, if an individual’s reputation is harmed by false or unjust accusations, they may seek redress through a claim of defamation. A person referred to as a “perpetrator” or “abuser” on the form may have grounds to challenge such a label, particularly if it is false, not substantiated by evidence, or not relevant to the application.
    • Defamation Act 2013: This law covers defamation claims and provides mechanisms for individuals to challenge defamatory statements. If someone is referred to as a “perpetrator” or “abuser” without evidence, they could potentially argue that such a statement is defamatory.
  3. Mental Capacity Act 2005 – Best Interests and Protection from Abuse
    The Mental Capacity Act 2005 (MCA) includes provisions to protect individuals who lack capacity from abuse. However, accusations of abuse must be substantiated and handled carefully. If a person is labeled as an “abuser” or “perpetrator” in a form or legal document, it’s crucial that such claims are supported by evidence and comply with the principles of the MCA.
    • Section 42 of the Care Act 2014: This section requires local authorities to make inquiries if there is a suspicion that an adult with care and support needs is at risk of abuse or neglect. If allegations are made, there is a legal framework for addressing and investigating abuse. However, individuals accused of abuse have the right to challenge those accusations in court.
  4. Court of Protection and Procedural Fairness
    If the application is before the Court of Protection (which deals with matters related to individuals who lack mental capacity), any allegations or labels used in the application (such as “perpetrator” or “abuser”) could be subject to scrutiny. The individual who is labeled as such has the right to contest these claims in the proceedings.
    • Court of Protection Rules 2017: These rules govern how cases are managed and how parties can challenge evidence. If someone is referred to as a perpetrator or abuser in an application, they can ask the court to clarify or remove such labels if they believe they are inaccurate, unfair, or unsupported by evidence.
    • Principles of Procedural Fairness: The Court of Protection must act in a way that is procedurally fair. If a person is unfairly labeled in a manner that impacts their legal rights or standing, they have the right to challenge the labeling or seek to have it removed.
  5. General Principles of Natural Justice
    The principle of natural justice, which ensures fairness in legal proceedings, applies in all public law matters, including deputyship applications under the MCA. This principle includes the right to know what evidence is being presented against you, the right to respond to it, and the right to challenge any findings that could be unfairly prejudicial. If an individual is labeled as a “perpetrator” or “abuser” on the OPG130 form, they would typically be entitled to challenge such a label if it is inaccurate or prejudicial.

What Legal Authority Supports This?

  • Article 6 of the ECHR (Right to a fair trial)
  • Defamation Act 2013
  • Mental Capacity Act 2005 (particularly Sections 1-3 regarding capacity and the best interests of the person)
  • Care Act 2014, Section 42 (Duty to investigate suspected abuse or neglect)
  • Court of Protection Rules 2017 (Procedural rules for managing applications and challenges)
  • Principles of Natural Justice (Fairness in legal procedures)

How to Challenge the Label?

If a person wishes to challenge the label of “perpetrator” or “abuser” in an OPG130 application:

  1. Raise the Issue in the Application Process: The individual (or their legal representative) can raise the issue in the initial stages of the application. They may file a response with the Court of Protection to dispute any allegations.
  2. Court of Protection Hearing: The issue could be raised during a hearing, and the individual has the right to argue that the label is incorrect or defamatory. This might involve providing evidence that contradicts the label.
  3. Request for Review or Appeal: If the individual believes that the decision to use such labels is prejudicial or unfair, they may seek a review or appeal of the decision.

In conclusion, a person referred to as a “perpetrator” or “abuser” in an OPG130 application has a legal right to challenge that definition, and they may do so through the mechanisms outlined above, including the right to fair treatment under Article 6 ECHR, the Defamation Act 2013, and principles of procedural fairness and natural justice.

RIGHT TO REPLY

Who raised the ‘concern’ regarding Elizabeth’s finances?

What is the nature of that concern? (in detail, not generality)

Failure to disclose this information is denying me the long established right of reply to my accuser and denying me my inalienable right to a fair hearing.

Withholding the information on the grounds of confidentiality is absurd. These concerns, as described are about me and therefore are not protected by third party confidentiality.

Being investigated as a “perpetrator and abuser” is not nice but it is very good to bring things out in the open because I am sure I am not alone. It impacts upon your life and I do not even know who this social worker is who has automatically made serious allegations to revoke the POA and that is another matter altogether and the reasons behind it. It is a pity that social services do not work together with families in an open decent and transparent manner.

I also pointed out to the Public Guardian Office the following:

“We are being denied justice under the following maxis.

Audi Alteram Partem. The right to reply.

Nemo Judex in Causa Sua. No person may be a judge in their own cause.

Unless there is a statutory exception (internal policy will not suffice)

If there is a statutory exception the burden of proof is on those claiming the benefit of it. I will require black letter law authority from Office of the Public Guardian if this position is being maintained”.

In the absence of any response from the Public Guardian Office I have been trying to locate the social worker behind all of this. I thought at first it might be the Local Authority so I wrote the following email and then to the Trust’s social work team and here are the responses, both in denial which is typical yet they must have some idea of who and where the team is located and their email address. Anyway this is the outcome of my investigations below:

MY INVESTIGATIONS INTO WHICH SOCIAL WORK TEAM IS INVOLVED

Email from “CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST)” lpft.careconcerns@nhs.net

LPFT’s Social Services department were not involved with Elizabeth’s care until 7th June 2024 and therefore did not contribute to this decision, or the OPG investigation. In addition, an Approved Mental Health Professional was also not involved in the decision-making process around phone use, therefore we are unable to provide a name to share with you.”

So the decision to take the phone away and hold it in the office and keep in place constant supervision 2-1 is so they say “an MDT decision! If things go wrong then it would be an “MDT fault”. In other words no accountability for anything. This is of course in breach of human rights not that they appear to even exist in this area.

So in that case who is involved???

Hi

Susan is not open to our team, if we could be removed from the email chain please.

Thankyou

Kind Regards

Sarah Duty social worker

LPFT Sec 75 social care west team.

OK let’s rule the section 75 west team out in that case. But now look at the email below and my comments in bold.

How very strange as the Council say they are not involved but somebody knows who is involved and I would like to know who is behind calling me a Perpetrator and Abuser??? I am sure anyone would want to know this.

From: Customer Relations Team <customerrelationsteam@icasework.lincolnshire.gov.uk>
Sent: 31 December 2024 10:29
To: susanb255@outlook.com <susanb255@outlook.com>
Subject: Enquiry (ref: 11294061)

Dear Susan Bevis

Ref: 11294061

The Customer Relations Team at Lincolnshire County Council have received a copy of your email that you sent to Debbie Barnes and Will Bell at Lincolnshire County Council in relation to the Lincolnshire Partnership Foundation Trust (LPFT) and your daughter, Elizabeth.

Please be advised that your concerns should be directed to the LPFT social work team. Elizabeth is open to LPFT and not LCC Adult Care. LCC Safeguarding have also advised that there is no remit for them with regards to Elizabeth case at this time.

Please find contact details for LPFT at the following link How to give feedback :: Lincolnshire Partnership NHS Trust

Kind regards,

James Taylor

Customer Relations Advisor

Customer Relations Team

Lincolnshire logo

I will further add to this blog once MY INVESTIGATIONS are concluded and the real reasons behind everything going on which is very disturbing for all families affected. I will add the points of law and everything other parents and carers need to know faced with these disturbing circumstances.

I have been awake since 5.00 am though not because of excitement or preparing for Xmas day at home as there will be no Xmas Day for me like many other caring parents and relatives affected.

I am thinking right now of all those alone at Xmas and deprived contact with their sons/daughters/relatives who are held as prisoners for years and years on end under units strictly controlled by the NHS all over the country. I am also thinking of those abandoned in the community and in schemes where they are isolated where there will be no celebrations or family visits due to heavy restrictions. This is the reality of “care” in the UK today.

There will be no celebrations in my household today as I have a fair journey to make to visit for a one hour slot 2-1 supervised. That visit will be classed as “enhanced” supervision which is even colour coded by some NHS trusts. I still have not got over the traumatic visit to see Elizabeth last year. She was on an acute ward then but now moved to a rehab but still held in a highly restricted manner like you would expect from a secure unit. I cannot even compare this to prison as I have heard that visitors to a prison are treated more respectfully.

Pushing aside the family celebrations, the food and presents etc what is so bad is my request to take Elizabeth to church received no response other than “what church would you wish to take her to?” So I mentioned the cathedral since this is where Elizabeth went on line to post a couple of prayers to the effect that she wished to come home. That was three years ago now. So I again mentioned the Cathedral and also mentioned that a visit to church could perhaps be facilitated through the Chaplain’s office. I have now found out there is no Chaplain and therefore my daughter’s religious needs and that of others on the ward are not even being catered for.

Anyway, I have got together presents and money to give to Elizabeth today and chocolates to share amongst her friends on the ward. She phoned me last night to say that each patient had been given £10 to spend on a takeaway and that she was looking forward to this.

First of all the Post Office Scandal, now WASPI and currently the scandal of thousands of vulnerable people trapped on wards all over the Country, not forgetting Wales and Scotland. It is shocking what is going on in the UK today. I have recently written to Wes Streeting about this but received no response and then wrote to my MP, Victoria Atkins.

The effects of not being allowed meaningful contact with your relative and treated like a criminal is devastating and impacts upon your health wellbeing as a carer as well as being detrimental to the vulnerable person. No impact assessments have ever been carried out. I see it as the ultimate control and bullying. This is not compassionate care at all. It is not about protecting the vulnerable person and keeping them safe like they say. This is being done simply to protect the interests and pathway plans of the institution and I will explore the true reasons for all of this later following my visit to see Elizabeth.

Last year Elizabeth was thrown into seclusion when she became upset by all the note taking going on. I had no idea Police had been called on Xmas Day. Staff gathered outside the visitor’s room and just grabbed hold of her and put her in seclusion for simply just shouting and there was constant note taking throughout my visit which is against any caring professional’s code of conduct. Following last year’s visit I received a letter continuing my ban on visit with the verbal threat of this being indefinite by Elizabeth’s doctor. There appears to be no human rights and the law is being disregarded by professionals.

This year I hope Police will not be called on me again as this amounts to intimidation and bullying and last year I felt obliged to voluntarily complete a Section 9 statement which I doubt any staff members did likewise because the allegations could not be substantiated and outside of the visitor’s room there would have been CCTV.

This kind of treatment is devastating and impacts upon you greatly but no-one cares under the NHS and they ruthlessly continue with such restrictions against you as a parent/carer without a thought of how this is completely and utterly wrong./ There is no openness and transparancy about the real reasons behind so many thousands of vulnerable people spending a lifetime in these unsuitable institutions which can never replace home and family. Elizabeth has her own bungalow but the cost of keeping so many in such institutions amounts to hundreds and thousands of pounds per patient per year.

For any parents going through similar hell please feel free to write your very own story on my blog of how you are affected by deprivation of contact under institutional imprisonment on Xmas day and in general. I will be happy not only to feature other similar cases but post to the relevant politicians and anyone else as you may wish.

https://www.hssib.org.uk/patient-safety-investigations/mental-health-inpatient-settings/

We investigate patient safety concerns across England to improve NHS care at a national level.

Investigation report

Mental health inpatient settings: out of area placements

Date Published: 21/11/2024

About this reportBrief Summary see full report at: https://www.hssib.org.uk/patient-safety-investigations/mental-health-inpatient-settings/
In June 2023 the Secretary of State for Health and Social Care announced that HSSIB would undertake a series of investigations focused on mental health inpatient settings. This report is the third report in the series. In October 2024 HSSIB published a report titled ‘Creating conditions for the delivery of safe and
therapeutic care to adults’ and in September 2024 HSSIB also published an interim report titled ‘Creating conditions for learning from deaths and near misses in inpatient and community mental health services: Assessment of suicide risk and safety planning’.

This is one of a series of HSSIB investigations on the theme of patient safety in mental health inpatient settings. This investigation explored the issue of out of area placements (OAPs) – that is, scenarios where a patient is placed in a mental health inpatient setting that is a long way from their home or usual place of residence.

Theme: Mental health

This investigation explored the issue of out of area placements (OAPs) – that is, scenarios where a patient is placed in a mental health inpatient setting that is a long way from their home or usual place of residence. Below is a brief summary- link above to full report.

OAPs can cause harm to people, from the increased anxiety caused by a new and unfamiliar setting, to developing complex post-traumatic stress disorder because of the way in which they are transported and detained in an OAP.

The Mental Health Act Code of Practice requires that patient, family and carers’ choice is taken into consideration when making decisions about where a patient should be placed. It also requires that every effort is made to place a person as close to home as possible. Patients, families and carers of adults and children may not be asked about their choices and views on OAP.

The investigation found that harm (including dying by suicide, physical, psychological, Distress and anxiety) was happening to patients, families and carers because of OAPs and the impact of being far away from their normal support network. There was also significant anger, frustration and loss of trust in the mental health system as a result of their experiences

The investigation found that OAPs can increase patients’ length of stay in hospital and therefore contribute to harm to patients.

Patient, family and carers’ wishes and preferences, as required in the Mental Health Act 1983: Code of Practice, are not documented by health and care staff or routinely monitored during Care Quality Commission inspections. This leaves patient, families and carers feeling they are not listened to and increases anxiety, frustration and anger, leading to harm for people and creating distrust in the system.

Advocacy services are vital for a patient to be able to put forward their views for consideration in decision making about their care, but advocacy is not always offered to patients.

The rules, governance and legal framework within which health and social care organisations’ work differ. This can create friction in the system, preventing integration and pooling of funds across organisations, slowing down discharge and patient flow, and is a significant factor in the use of OAPs.

It is impossible to look at the mental health inpatient system in isolation; consideration must be given to other health and care services such as HSSIB makes the following safety recommendations Safety recommendation R/2024/042:

HSSIB recommends that the Department of Health and Social Care includes the documenting of patient, family and carers’ wishes and preferences within the Mental Health Bill. This will ensure all patient, family and carer voices are community mental health services, social care and social housing provision by local authorities.

When patients are sent to OAPs, the sending hospitals do not maintain responsibility for the welfare or clinical oversight of those patients.

Limited patient flow through mental health and other services reduces trusts’ ability to discharge patients from hospital, which can increase the use of OAPs.

NHS mental health trusts do not always have local authority social workers embedded in their organisations, as used to be the case under previous working arrangements.

Embedding social workers within trusts was viewed by social workers and healthcare staff as a benefit to patients and improved patient flow and discharge planning.

Some NHS trusts are undertaking some of the functions of local authorities relating to social housing, in order to enable patients to be discharged and reduce the need for OAPs.

Beds and patients are managed in an impersonal way without seeing patients as having individual requirements. They are both treated as “commodities” when deciding on the need for an OAP because of the pressure on services and need for acute mental health beds.

Crisis resolution and home treatment teams can have a significant influence in the early discharge of patients, that then creates a bed for the most mentally unwell patients in the community.

Hospitals that send patients out of area sometimes rely on Care Quality Commission rating to base OAP decisions on, but many of these ratings are out of date and may not reflect the current situation.

Many acute mental health patients have neurodevelopmental conditions and would benefit from early testing when they are in contact with community and acute mental health settings. Early assessment makes sure people are placed on the right pathway and may reduce admissions to acute mental health settings and the need for OAP.

Safety recommendation R/2024/042:

HSSIB recommends that the Department of Health and Social Care includes the documenting of patient, family and carers’ wishes and preferences within the Mental Health Bill. This will ensure all patient, family and carer voices are community mental health services, social care and social housing provision by local authorities.

When patients are sent to OAPs, the sending hospitals do not maintain responsibility for the welfare or clinical oversight of those patients.

Limited patient flow through mental health and other services reduces trusts’ ability to discharge patients from hospital, which can increase the use of OAPs.

NHS mental health trusts do not always have local authority social workers embedded in their organisations, as used to be the case under previous working arrangements.

Embedding social workers within trusts was viewed by social workers and healthcare staff as a benefit to patients and improved patient flow and discharge planning.

Some NHS trusts are undertaking some of the functions of local authorities relating to social housing, in order to enable patients to be discharged and reduce the need for OAPs.

Beds and patients are managed in an impersonal way without seeing patients as having individual requirements. They are both treated as “commodities” when deciding on the need for an OAP because of the pressure on services and need for acute mental health beds.

Crisis resolution and home treatment teams can have a significant influence in the early discharge of patients, that then creates a bed for the most mentally unwell patients in the community.

Hospitals that send patients out of area sometimes rely on Care Quality Commission rating to base OAP decisions on, but many of these ratings are out of date and may not reflect the current situation.

Many acute mental health patients have neurodevelopmental conditions and would benefit from early testing when they are in contact with community and acute mental health settings.

Early assessment makes sure people are placed on the right pathway and may reduce admissions to acute mental health settings and the need for OAP considered in decisions relating to where the patient identifies they would like to be close to, for example the patient’s home or a family member, specifically when an out of area placement is needed.

Safety observation O/2024/043:

Mental health inpatient services can improve patient safety by offering advocacy to all mental health inpatients at the point of admission, and ensuring that the patient’s decision about whether or not to have an advocate is continually reviewed as their treatment continues and needs may change. This can ensure that patients’ needs and views are taken into account by health and social care staff when decisions about their care are being made, particularly when in an out of area placement.

Safety observation O/2024/047:

Healthcare services can improve patient safety by conducting assessments for neurodevelopmental conditions such as autism and attention deficit hyperactivity disorder, where it is safe and clinically indicated, at the earliest opportunity when a person is in contact with community and acute mental health services. This can ensure that patients are put on the appropriate pathway early. This can prevent harm that may be caused by receiving inappropriate treatment and reduce admissions to mental health inpatient settings, thus reducing the need to use out of area placements.

1.2.5 Acute adult inpatient wards are provided by NHS trusts and independent sector hospitals (for private and/or NHS-funded patients). Wards in the NHS are ‘commissioned’ (planned, purchased and monitored) by integrated care boards (ICBs) (NHS England, 2024b). ICBs are part of integrated care systems as defined in the Health and Care Act 2022 and plan health services for their local populations

1.2.6 In acute settings all staff have a duty to ensure that patients are subject to minimum or least restrictive practice that is appropriate and the restrictions should be for the least time possible (Department of Health, 2014). Restrictive practices are techniques used to manage a patient’s behaviour to prevent them from harming themselves or others. They include practices such as physical restraint, seclusion, rapid tranquilisation and continuously being close to and watching a person (observation).

1.3.5 Patients can be discharged from an OAP to their normal place of residence, a carer or family member or to social housing if needed. The same can be said for patients in NHS acute care. Not all patients who are in an OAP or NHS acute service need social care or housing support on discharge.

Section 75–this section enables NHS bodies and local authorities to enter into arrangements which are prescribed in secondary legislation. The NHS Bodies and Local Authorities Partnership Arrangements Regulations 2000 (UK Statutory Instruments, 2000), as amended, is the relevant secondary legislation that sets out details of the permitted arrangements. This can include pooling of funding and resources across health and social care services that can benefit patients.

1.4.4 Section 130 of the Act relates to independent mental health advocates

(IMHAs). Patients who qualify under the terms of the Act are entitled to an IMHA who will be assigned by the local authority. Advocacy is a ‘means of getting support from another person to help you express your views and wishes, and help you stand up for your rights’ (Mind, 2018).

2.1.3 The patient, who was diagnosed with autism and a mental health problem, was on an acute ward and had begun to feel “anxious and disturbed”. They began showing signs of increased personal risk-taking behaviours, and staff believed that the patient needed to be transferred from the acute ward to their psychiatric intensive care unit (PICU). The PICU was full so the decision was made to transfer the patient to an independent OAP provider’s PICU which was 150 miles away. The patient went to bed as normal, believing that they would be going to the hospital’s PICU sometime during the next day. The patient was woken in the early hours of the morning by several members of staff and told to pack their personal belongings because they were being transferred to an OAP PICU. The patient had been to another OAP PICU for a previous acute admission, where they had had a bad experience. When told what was happening to them, the patient became “disturbed and aggressive” towards the staff because they did not want to go.

2.1.4 At this point the staff physically restrained the patient, who was “handcuffed” in preparation for a secure ambulance transfer. The ambulance was already on site and the ambulance staff collected and transferred the patient in handcuffs to the OAP. When arriving at the OAP PICU, the patient was stripped of all their clothes and personal belongings (including their mobile phone), and given anti-ligature clothing (tear proof clothing that minimises the risk to patients of attempting to ligature) and locked in an “isolation cell”. The patient said: “It felt like I was in prison and had done something wrong.”

2.1.5 Ward staff at the acute hospital from which the patient was transferred (the sending hospital) had considered that the patient was “undertaking some risky behaviours”, but had not shown any signs that they wanted to self-harm or die by suicide. The patient said: “I didn’t understand why I had to wear the clothes [antiligature] because I’ve never thought about dying like that [by ligature].” They said: “No one listened to me, when I said there was no need for this.”

Parent’s reflections

2.1.6 The parent of the patient found out about the transfer to the OAP 24 hours after the patient had been taken there. They were very angry, scared and anxious for their child because of previous OAP experiences. They immediately contacted the OAP and arranged a visit. They observed their child in a locked cell, with minimum access to an outside space, “heavily sedated, confused and very scared”.

The parent knew that their child needed routine, a calm environment and access to their mobile phone to call the parent. Their mobile phone was vital and a way for the patient to stay connected to their parent, grounded and safe. The parent complained to the OAP PICU but did not feel that they were being listened to. They kept complaining for several days until finally they reached out to a “kind and caring” staff member at the sending hospital. This staff member made a personal effort to visit the OAP PICU and found that the patient’s welfare and treatment needs were not being met. With a doctor from the sending hospital they assessed the patient and repatriated them (brought them back to the sending hospital).

3.1.2 All mental health staff and national leaders recognise that the best place to care for someone, and least restrictive, is in their own home or place of residence. NHS England told the investigation that only the most unwell people should be admitted to acute care.

3.1.3 The ‘Mental Health Act 1983: Code of Practice’ (Department of Health 2015) states that ‘NHS commissioners and providers should work together … to place individuals as close as is reasonably possible to a location that the patient identifies they would like to be close to (e.g. their home or close to a family member or carer)’.

3.1.10 NHS trusts and community mental health teams told the investigation that they are under significant pressure and that they cannot always apply the NHS England’s policies that are intended to reduce OAPs. This was because they have an increased service demand and usage and do not always have the time, capacity or ability to make the changes needed.

3.1.11 The investigation found that there is a gap between what senior policy makers believe is happening to reduce the use of OAPs and what is happening at the operational level.

3.1.15 Families and carers told the investigation that even an OAP 25 km away could be difficult, especially when they were working or the OAP hospital only gave very defined times to visit. Some families said that OAPs could be in a rural location with no access by public transport. One family told the investigation that they had a 2-hour drive to the OAP where their daughter was, but on several occasions when they visited within the time allotted, their daughter was not able to see them because she was unwell and they had to forgo the visit. Some other reasons that the family gave for short notice visit cancellations were “not enough or the right type of staff to support the visit” and they felt that the “needs of the organisation was being put ahead of the needs of their daughter”. There was no flexibility from the OAP hospital to allow a visit outside the set times. This meant they were unable to see their daughter for another week. This caused significant distress to the family and their daughter.

3.1.16 One trust told the investigation that it covered three local authority regions with two integrated care boards (ICBs) and had several acute wards across the whole region. A patient could be admitted to an acute ward at the far reaches of the region, in some cases up to 80 km from their home, that had poor transport links for visiting families. This was not considered an OAP as it was a bed within the trust and did not have to be reported to NHS England; however, this was locally referred to as an “internal OAP”. The trust had recognised that for the patient it was not close to home, so treated it as an OAP.

3.1.17 NHS England told the investigation that people with diagnosed learning disabilities or autism (neurodevelopmental conditions) are managed under specialised commissioning arrangements. NHS England and staff in acute settings told the investigation that there were not always specialist beds available locally for this group of patients and therefore many need to be sent to an OAP (NHS England, n.d.b). The investigation did not look at these specialised commissioning arrangements as they were out of scope for the investigation. The investigation did explore the impact of early diagnosis of neurodevelopmental conditions and the impact on OAP (see section 4).

3.2.2 Harm from OAPs can be difficult to define or even recognise. In some cases it leads to physical harm such as self-harming behaviours or attempting to die or dying by suicide. Patients, carers, family members and staff told the investigation that harm mainly manifests itself as distress, feeling scared, anxiety, developing complex post-traumatic stress disorder or other unsafe behaviours, among other mental health problems. The investigation heard that harm due to being sent to an OAP can be caused by the increased anxiety of not knowing new staff, or delays in discharge due to lack of capacity in social care or lack of social housing provision.

In an OAP, many patients said that they did not know the local environment and were “torn” from their social support network. This subject will be explored further in the HSSIB investigation ‘Creating conditions for learning from deaths and near misses in inpatient and community mental health services’.

3.2.3 Carers and families described the moment that their child was sent to an OAP as “devastating”. One parent described her child being collected by secure ambulance:

3.2.7 When a patient transferred between an OAP and their sending hospital, staff told the investigation that “they start different treatment plans, have their treatment altered and it’s almost as if the clock restarts [for their inpatient care]”. This costs more to the NHS, extends treatment and harms patients. They said that the longer a patient stayed in hospital the more likely they were to be readmitted at some point in the future. NHS trusts told the investigation that longer stays meant that patients could lose social skills and become less independent, becoming more reliant on care from the NHS and more likely to return as an inpatient.

Staff view on harm

3.2.8 Staff at all sites visited told the investigation that when discharge was delayed, patients could “end up in a spiral” of deterioration and suffer a relapse in their mental health. When this happened, staff told the investigation that any discharge plans were stopped, and in some cases had to start again, while the patient was treated for their relapse. This in turn meant beds did not become available and increased the chance of another patient being sent to an OAP.

“If we can’t discharge [patients] we have to use out of area placements.”

Challenges in discharge from an OAP due to patients now being lodged in a different local authority area from their normal place of residence.

3.2.11 The investigation observed people being cared for in various inpatient settings at NHS trusts and independent providers. These places can be challenging environments and staff told the investigation it can cause harm, particularly for those people who no longer need acute care when their discharge is delayed. The investigation found that OAPs can increase patients’ length of stay in hospital and therefore contribute to harm to patients.

A patient who relies on close relationships with family and friends to keep them well may see an OAP as inappropriate.

3.3.6 The Mental Health Act 1983: Code of Practice (Department of Health, 2015) states that placement of people ‘should take account of any risk assessment undertaken, the availability of services which can meet the patient’s individual needs, any assessment in respect of the likely duration of the patient’s stay, and any other factors raised by the patient and their family’.

3.3.9 ‘Acute inpatient mental health care for adults and older adults’ (NHS England, 2023a) provides guidance to integrated care systems (ICSs) and acute trusts ‘to support the commissioning and delivery of timely access to high quality therapeutic inpatient care, close to home and in the least restrictive setting possible’.

3.3.11 Staff responsible for bed management told the investigation that they did not consider personal choice, mainly because of time pressure and the sheer volume of patients they had to manage. One staff member told the investigation that an unwritten “next bed available for the next patient who becomes unwell” policy was in place. The investigation found that this was a common situation across many NHS trusts and recognised that this was due to pressures relating to patient flow and discharge.

3.3.13 The investigation found that parents, families and carers are not listened to and their views are not taken into consideration when making decisions on whether an OAP is the right thing for a patient or not. Many told the investigation that they believed that their voice was important in all care decisions made on behalf of patients, and that those decisions should be documented.

3.3.14 The Care Quality Commission (CQC) is responsible for monitoring and regulating healthcare, including how services are delivered in line with the Mental Health Act. The CQC told the investigation that when it visited patients, they were already in an inpatient setting and the CQC’s focus was on the care that was being provided, irrespective of whether in an OAP or not. It told the investigation that it did not assess or inspect a patient pathway, so would not look at the decision making process for sending a patient to an OAP.

3.3.15 The CQC said that it did not check whether patient and family and carers’ concerns and opinions were considered as required under the Mental Health Act. It told the investigation that it had not seen people’s choices documented with respect to OAP, but recognised that the Mental Health Act required that they be taken into consideration. The CQC said that at the point of admission, a patient is so unwell that they just need acute care, and even if a patient had previously said they did not want an OAP, it may be the only option open to healthcare staff to keep the patient and others safe.

3.3.16 The CQC told the investigation that:

“It is important to remember that the point of the MHA [Mental Health Act] is to provide a legal framework around compulsory admission, assessment and treatment. This means that decisions about care and treatment under the MHA can be made, lawfully, to which people do not consent. By definition, therefore, it is lawful, at times, for providers to make decisions relating to care and treatment under the MHA which do not reflect the wishes, preferences or views of people using services, their carers or families. People’s wishes and preferences should be documented but the MHA allows them not to be complied with in relation to decisions where the Act gives clinicians the power to admit or treat without consent.

Safety recommendation R/2024/042:

HSSIB recommends that the Department of Health and Social Care includes the documenting of patient, family and carers’ wishes and preferences within the Mental Health Bill. This will ensure all patient, family and carer voices are considered in decisions relating to where the patient identifies they would like to be close to, for example the patient’s home or a family member, specifically when an out of area placement is needed.

3.4.1 Many NHS trusts that the investigation visited said that when they had to use an OAP they considered the latest CQC rating before sending a patient to an independent mental health provider. They looked for a CQC rating of ‘good’ or ‘outstanding’; however, if there was no bed availability within these ratings they would consider providers rated as ‘requires improvement’ (Care Quality

Commission, 2022). Several NHS trusts said that to accept an OAP place in a ‘requires improvement’ OAP they would visit to assess the placement themselves before a decision was taken so that they could assess whether they “feel comfortable” with sending patients there. They also said that under no circumstances would they consider sending a patient to an OAP provider rated as ‘inadequate’.

THIS IS NOT TRUE FOR EXAMPLE:

The investigation reviewed CQC ratings for several of the independent OAP providers that NHS sending hospitals used. They ranged from reports published in early 2024 (most up to date) to over 3 years since the last inspection. Therefore sending hospitals may be basing decisions on which OAP to use on out of date information.

The sending hospital themselves might need an updated CQC rating.

A consultant psychiatrist in an OAP hospital told the investigation that they were responsible for the treatment plan of patients who were at an OAP. They said that they would update NHS colleagues when they were able, but this would only be when the patient was getting ready for discharge.

3.4.9 A social worker within an ICB told the investigation that the ICB was “KPI [key performance indicator] focused, and only maintained oversight on learning disability and autism [patients’] out of area placements”. They said that under guidance from NHS England (2023b), the ICB had a responsibility to monitor people with a learning disability and/or autism who were sent to an OAP. The social worker said that ‘commissioner oversight visits should be happening at least every 8 weeks for adults and every 6 weeks for children and young people’ (NHS England, 2023b).

The investigation found that the same arrangements or requirements do not exist for inappropriate OAPs.

Cygnet Appletree GP – 1-463761234 Cygnet Appletree (20/01/2023) INS2-14022377821 Suddenly rated Good!! Very strange rating indeed especially since RT appeared frequent from what I heard in 2023: The CQC’s report said staff rarely attempted to calm patients down before resorting to physically restraining them and injecting fast-acting tranquilisers, which were “used frequently without clear rationale”. That was an accurate description from what I have heard in 2023.

Care Quality Commission (CQC) inspectors found Cygnet Appletree in Meadowfield, Durham, had not protected patients “from abuse or poor care”. Following the April inspection, it restricted the hospital from taking new patients without prior written consent. However the Doctor there Dr M had the decency to contact me on one occasion to advise about an urgent A&E admission. However RT is documented as being frequent.

Cygnet Appletree: Mental health hospital ‘did not protect patients’ – …

http://www.bbc.com/news/uk-england-tyne-58323174

Cygnet Hospital Godden Green in Sevenoaks shuts …

Another one above and that didn’t stop the bed management!

3.4.11 Several ICBs told the investigation that they did not maintain oversight of inappropriate OAPs. They said this was the responsibility of the sending hospital.

They said that they requested information from NHS trusts on OAP figures and costs to try to reduce OAP spending.

Advocacy

3.4.12 Many patients do not have a social support network. This might be because there has been a breakdown in their relationships, they do not have anyone to care for them, they are in social care, or many other reasons. This is not true in our case.

People without a social support network may have to rely on advocacy services to speak for them after they are admitted as an inpatient. Unfortunately NOT ALL ADVOCATES CAN BE TRUSTED.

Advocates are trained in objectively representing the views of people who otherwise cannot speak for themselves. Unfortunately in reality this does not appear to be true when confidentiality has been breached.

Many patients who are placed outside their local area are uncomfortable, feel vulnerable and need someone to speak on their behalf.  

3.4.14 The charity VoiceAbility told the investigation that IMHAs help patients to voice their concerns when they are unable to do so by themselves. This is particularly relevant when there are “scary” large meetings with lots of people, such as a multidisciplinary meeting. VoiceAbility said that there are “advocacy deserts” across the country and real variability in how patients are told about advocacy. It said that its work had identified that many patients were told about advocacy when they were at their most vulnerable and unwell, when they may not be able to process information or make decisions. It said that a patient’s decision at that point was rarely revisited to see if the situation had changed. Still waiting for response from Voiceability to my valid complaint.

3.4.19 Several NHS trusts told the investigation that it was easy to see patients as a “commodity” rather than as a person: “they need a bed so get the next bed”. They said that they are “trying to do their best for patients” but the “sheer volume and increasing acuity [more co-existing social and mental and physical health conditions]” of patients means they are “forced” to manage people as a “commodity” despite it going against their instincts.

3.4.20 NHS trusts told the investigation that the average cost of a patient on an NHS acute ward was approximately £400 per day. They also told the investigation that the cost of sending a patient to an independent provider for an OAP could range from £600 to £1,000 per day depending on the site and the needs of the patient. The cost in both settings may increase or decrease depending on the patient’s treatment plan or the number of staff needed to keep an individual patient safe.

3.4.21 Senior NHS trust staff told the investigation that they did not need more beds, they just needed the health and social care system to operate more efficiently and collaboratively to improve patient flow and discharge.

3.5 Mental health inpatient flow

3.5.1 Many mental health and social care staff told the investigation that when describing OAP, it was impossible to look at the healthcare inpatient system in isolation. Many patients needed acute services because the lack of appropriate provision of community mental health care, social care support, drug and alcohol services, or delayed diagnosis of neurodevelopmental conditions, meant their needs had not been met to keep them safe in the community.

Multi-agency meetings

3.5.5 The investigation observed several multi-agency discharge events (MADEs).

These are meetings where individual patients are discussed and discharge planning is carried out. The meetings are chaired by the NHS trusts and should be attended by community mental health teams, doctors, nurses, psychologists, therapists, and representatives from ICBs and local authorities (LAs). The meetings are meant to be multi-agency, but the investigation observed that in several cases only staff from the acute trust and community teams attended. As these teams were within the acute trust’s resources, or worked very closely with them, they were easy to coordinate and bring to the meeting. NHS trusts chairing the meetings told the investigation that the external agencies were outside the trusts’ control and would only attend if they had someone available to do so. LA social workers said they were stretched and often had competing priorities so couldn’t always make the meetings. Similar reasons were given by ICBs.

3.5.6 The lack of full multi-agency attendance at the MADE meant that discharge planning could not be completed, and many actions were left unresolved. This had a direct negative impact on flow and discharge, and staff told the investigation that it was another reason for the need for OAPs.

3.5.10 The Royal College of Psychiatrists (2022) sets standards for crisis resolution and home treatment teams. One of these standards states:

‘The team works closely with acute inpatient care, including gatekeeping and facilitating early discharge.

Safety observation O/2024/044:

Crisis resolution and home treatment teams can improve patient safety by joining quality networks for crisis resolution and home treatment teams and could consider using continuous clinical reviews of mental health acute inpatients. This can ensure that appropriate patients are discharged early and could maximise acute care bed availability for patients in the community who are at high risk because of their mental health problem, and reduce the need for out of area placements

3.6 Discharge from mental health inpatient settings

The discharge challenge

3.6.1 Every NHS trust the investigation spoke with described discharge as the most significant challenge and driver for the use of OAPs. They said that if discharge could be addressed “systemically” then flow would improve and the use of OAPs would be reduced. All NHS trusts and OAP providers told the investigation that the most significant factor preventing timely discharge was the lack of health and social care integration and collaborative working. NHS England told the investigation that challenges relating to discharge had an impact on flow through the system and could create additional harm to patients, as previously mentioned in this report.

3.6.4 Senior NHS trust staff told the investigation that healthcare’s job was to treat patients who were acutely unwell and then discharge them and hand over their care to social care services. They said that from their perspective, once a patient was well enough to be discharged, and if they needed a social care package or housing, then the patient was social care’s or an LA’s responsibility. One NHS senior leader told the investigation that there were “differences in purposes [between health and social care], but when the differences can’t be resolved by one side or the other it is the patients who come to harm”.

3.6.6 The Department of Health and Social Care (2024b) produced guidance on how NHS bodies and local authorities should work together to assist with discharge planning. It sets out eight principles, that if followed may ensure more efficient discharge for acute patients. The principles are:

3.6.7 Although not specifically referred to in this report, the investigation discussed most of the principles above, and found that in practice the principles were not easy to achieve. NHS staff, independent OAP providers and local authorities told the investigation that the main challenges to complying with the principles were the different funding models, governance structures, business processes andregulations between health, social care and local authorities. These could slow down the discharge process, extend stays for patients and increase the reliance on OAPs.

principle 1: individuals should be regarded as partners in their own care throughout the discharge process and their choice and autonomy should be respected. This is not happening!

principle 2: chosen carers should be involved in the discharge process as early as possible. Very true! and not cut out of everything.

principle 3: discharge planning should start on admission or before, and should take place throughout the time the person is in hospital. Definitely not happening after so many years!

principle 4: health and local authority social care partners should support people to be discharged in a timely and safe way as soon as they are clinically ready to leave hospital

principle 5: there should be ongoing communication between hospital teams and community services involved in onward care during the admission and post discharge Not happening.

principle 6: information should be shared effectively across relevant health and care teams and organisations across the system to support the best outcomes for the person good communication is required for this.

principle 7: local areas should build an infrastructure that supports safe and timely discharge, ensuring the right individualised support can be provided post discharge No sign in sight and absolutely nothing safe

principle 8: funding mechanisms for discharge should be agreed to achieve the best outcomes for people and their chosen carers and should align with existing statutory duties.

3.6.7 Although not specifically referred to in this report, the investigation discussed most of the principles above, and found that in practice the principles were not easy to achieve. NHS staff, independent OAP providers and local authorities told the investigation that the main challenges to complying with the principles were the different funding models, governance structures, business processes and regulations between health, social care and local authorities. These could slow down the discharge process, extend stays for patients and increase the reliance on OAPs.

3.6.8 ‘Discharge challenge for mental health and community services providers’ was published by NHS England (2022). The guidance gives 10 steps that should be followed to assist with OAP discharge. NHS England had seen many of these 10 steps being applied locally but providers cannot influence LAs where actions can only be carried out by an LA. NHS trusts told the investigation that they were trying to comply with the guidance but found it challenging to do so when LAs and ICB partners did not attend meetings or had different priorities and perspectives on how patients should be cared for (on discharge). Many of 10 the steps rely on the advice of system partners, but NHS trusts have no ability to influence them. They told the investigation that healthcare providers were left with patients who were ready for discharge and who did not need to be in the challenging environment of an acute ward for prolonged periods.

3.6.10 The trust also said that dealing with several LAs and ICBs took significant management focus and they encountered different ways of working, priorities and financial arrangements, making discharge planning “very difficult”.

Funding

3.6.12 The ‘Close to home’ report (National Development Team for Inclusion, 2020) found that in relation to discharge and funding, ‘funding challenges are exacerbated by different systems growing and being affected by separate national legislation and guidance, rather than a national, integrated approach to planning’.

3.6.16 The investigation heard frustration from NHS trusts, ICBs and LA staff about the way finances are organised. They said that there were not common “business processes” due to the way that each of the organisations were governed and who they were accountable to. It was described that when the NHS needed to fund temporary accommodation to support discharge when the LA could not provide social housing, assigning the money from NHS funds could be relatively simple within the governance rules that exist. They said that the same funding “simplicity” did not exist with LAs, which meant it took longer to make decisions about allocating money for housing needs.

Social housing and temporary accommodation

3.6.17 LA social workers told the investigation that finding patients suitable social housing, or having their current social housing repaired before they are discharged, is a significant challenge and can take “some time”. It may mean that the discharge timelines that the NHS staff are working to cannot be met. The investigation learned that some patients had been in hospital for so long that they had lost their rights to keep the same social housing, so needed to find a new property before they could be discharged. NHS staff told the investigation that they could not, or would not always be willing to, discharge a vulnerable person to no address.

3.6.18 LA staff told the investigation that they knew that people needed social housing or social support packages to support discharge. They said that “bureaucracy” and “funding panels” (meetings where money is assigned to specific tasks) meant accessing funds could be slow and that some cases needed extra scrutiny with an additional funding panel. This process could take up to 12 weeks, which could mean significant delays in discharging patients from acute or PICU settings who were ready for discharge. Social workers said that they were “stretched thin” and they not only had to manage mental health patients awaiting discharge but other people who needed social care support. Many said that they felt there were “too many competing priorities” which meant that their focus could not always be given to mental health patients. They also said that there were staffing challenges within social work which meant that there were not always the staff to undertake assessments before discharge.

3.6.19 One NHS trust told the investigation that it had tried to be innovative and resolve the use of OAP and improve inpatient flow by discharging patients to bed and breakfasts funded by the trust. It said that when a patient was ready for discharge and the LA was unable to support a social housing request in the timeframe needed by the acute ward, the trust was able to fund a place in local bed and breakfast accommodation. The trust said that the cost of bed and breakfast accommodation was approximately £100 per night, compared to £400 per night on its ward. This approach also freed up a bed for a new patient and improved flow.

The trust said it had to take these steps because the LA was unable to meet the NHS trust’s timeframes for discharge. The investigation was told that this initiative was funded by the NHS trust despite the patient being ready for discharge and seen as “not the trust’s responsibility anymore”. The trust told the investigation that this had “helped improve discharge, flow, reduced use of OAP and helped prevent unneeded extended stays in hospital”.

Safety observation O/2024/045:

Health and social care organisations can improve patient safety by working together and embedding mental health social workers from the local authority in mental health acute hospitals. This can ensure that patients’ holistic health and social care needs are considered throughout their acute mental health admission and on into the community, and improve efficiency of working, patient flow and discharge and reduce the use of out of area placements.

One senior ICS member told the investigation that the ICS was a “fractured system, built on relationships rather than framework”. Another said there was “not a shared funding model” which meant that there were significant competing priorities and therefore lack of common patient safety focus in the system.

3.6.30 The investigation found that there was variation in how ICSs operate. The Department of Health and Social Care told the investigation that the Health and Care Act 2022 and guidance on ICSs were written in a way that allowed variation to meet the needs of local communities. Many staff in ICSs told the investigation that they understood the purpose of their organisations, but were not given clear guidance on how to set their organisation up. This had allowed inconsistencies and variability to develop across the country.

Safety recommendation R/2024/043:

HSSIB recommends that the Department of Health and Social Care works across government to review the statutory instruments, business processes and regulations that govern mental health services, social care and housing services impacting on mental health out of area placements and creates a proposal for the future accountability and integration of health and social care. This is to ensure that they are operating to consistent statutory, financial and regulatory frameworks. By addressing system integration and collaboration between health, social care and local authorities will define accountability and reduce or prevent out of area placements.

Healthcare staff working together

4.1.16 NHS trusts told the investigation that all teams needed to work together with patients to allow treatment plans to work and ultimately help patients get better and be discharged. This included community teams, home treatment teams, acute ward staff (including doctors, nurses, psychologists, therapists, health care assistants (HCAs), and hotel services staff). Several consultant psychiatrists told the investigation that if the whole multidisciplinary team and LA social workers did not work together in a manner that benefits the patient, safe flow and discharge became very difficult.

4.1.18 Many nurses and psychologists told the investigation that while HCAs’

primary purpose when undertaking observations was to watch patients to ensure their safety, if they engaged in a meaningful way with patients it could significantly benefit patients and could reduce lengths of stay.

4.1.20 While the investigation was not specifically exploring inpatient treatment and care, the investigation found that where patients are engaged in meaningful activities by caring and interested staff, it can benefit patients. This could result in reduced lengths of stay (Psychological Professions Network, 2024), improve patient flow and aid discharge.

  1. References
    Australian Transport Safety Bureau (n.d.) About ATSB investigation reports and
    terminology. Available at https://www.atsb.gov.au/about-atsb-investigation-reportsand-
    terminology (Accessed 23 September 2024).
    Care Quality Commission (2022) Our ratings and scores. Available at https://
    http://www.cqc.org.uk/about-us/how-we-do-our-job/ratings (Accessed 7 September 2024).
    Crossley, N. and Sweeney, B. (2020) Patient and service-level factors affecting
    length of inpatient stay in an acute mental health service: a retrospective case
    cohort study, BMC Psychiatry, 20, 438. Doi: 10.1186/s12888-020-02846-z
    Department of Health (2014) Positive and proactive care: reducing the need for
    restrictive interventions. Available at https://assets.publishing.service.gov.uk/media/
    5a7ee560e5274a2e8ab48e2a/JRA_DoH_Guidance_on_RP_web_accessible.pdf
    (Accessed 7 September 2024).
    Department of Health (2015) Mental Health Act 1983: code of practice. Available at
    https://assets.publishing.service.gov.uk/media/5a80a774e5274a2e87dbb0f0/
    MHA_Code_of_Practice.PDF (Accessed 6 September 2024).
    Department of Health and Social Care (2016) Out of area placements in mental
    health services for adults in acute inpatient care. Available at https://www.gov.uk/
    government/publications/oaps-in-mental-health-services-for-adults-in-acuteinpatient-
    care/out-of-area-placements-in-mental-health-services-for-adults-in-acuteinpatient-
    care#fn:1 (Accessed 5 September 2024).
    Department of Health and Social Care (2024a) Review into the operational
    effectiveness of the Care Quality Commission. Available at https://www.gov.uk/
    government/publications/review-into-the-operational-effectiveness-of-the-carequality-
    commission (Accessed 23 September 2024).
    Department of Health and Social Care (2024b) Discharge from mental health
    inpatient settings. Available at https://www.gov.uk/government/publications/
    discharge-from-mental-health-inpatient-settings/discharge-from-mental-healthinpatient-
    settings#principles-for-how-nhs-bodies-and-local-authorities-should-worktogether
    (Accessed 23 September 2024).
    Galante, J.R., Humphreys, R., et al. (2019) Out-of-area placements in acute mental
    health care: the outcomes, Progress in Neurology and Psychiatry, 23(1), pp. 28-30.
    Available at https://wileymicrositebuilder.com/progress/wp-content/uploads/sites/
    28/2019/02/OR-Molodynski-OAPS-lsw.pdf (Accessed 28 August 2024).
    Health and Care Act (2022) (UK Public General Acts). Available at https://
    http://www.legislation.gov.uk/ukpga/2022/31/contents (Accessed 5 September 2024).
    Health Services Safety Investigations Body (2024) Workforce and patient safety:
    temporary staff – integration into healthcare providers. Available at https://
    http://www.hssib.org.uk/patient-safety-investigations/workforce-and-patient-safety/thirdinvestigation-
    report/ (Accessed 10 September 2024)