There are “fundamental flaws” in how the Mental Capacity Act is understood and applied in practice, a report on findings from safeguarding adults reviews (SARs) has concluded.

The analysis of 27 SARs completed by authorities in London found mental capacity was the area of practice where lessons most commonly needed to be learned.

Mental capacity was mentioned in 21 of the 27 reports, the analysis found, and much of the learning was around missing or poorly-performed capacity assessments, an absence of best interests decision-making, and a lack of scepticism and respectful challenge of decisions.

Four of the reviews commented on the difficulties practitioners experienced in reaching a “confident or agreed decision” in a mental capacity assessment, the report said.

Another two mentioned the use of advocacy services as a significant area of learning. In both cases, a referral for an independent advocate was made too late to be effective in supporting the individuals, who had no other source of support to take part in decisions.

There was an “occasional comment” in one case where mental capacity had been well addressed, the report said, but the majority of the evidence pointed to “fundamental flaws” in how the Mental Capacity Act 2005 was being understood and applied in practice.

Other common practice issues included:

• Inadequate or absent risk assessments, or the failure to recognise escalating risks.
• A lack of personalised care.
• A failure to involve carers and recognise their needs.
• A lack of understanding or curiosity about people’s history and behaviours.
• A failure to be persistent and flexible when working with people who are reluctant to engage with services, and to take the time to build trust.

All of the above apply to Elizabeth under Lincolnshire Partnership Trust.

‘Lack of resources’ 

The report was produced by the London branch of the Association of Directors of Adult Social Services, and all the SARs were completed since the Care Act came into force in April 2015.

It also looked at organisational factors that influenced how practitioners worked, which included recording, resources, supervision and support, staffing levels, and legal literacy.

The analysis found 19 of the 27 reviews identified issues with how staff recorded information, or with the recording systems and processes provided by their organisation.

In some cases, records were missing, the report said, and in others too little information had been recorded or it was not up-to-date. This meant that concerns were not always picked up.

In 13 of the 27 cases, a lack of resources had also had an impact. The report pointed to one case where adult social care had refused to fund a care package for a person, even though the current level of support they were receiving was not meeting their needs.

Safeguarding Adults Reviews

Under the Care Act 2014, safeguarding adults boards (SABs) are responsible for safeguarding adults reviews.

A SAB must arrange a review when an adult in its area dies as a result of abuse or neglect, whether known or suspected, and where there is concern that agencies could have worked more effectively to protect the adult.

A review must also be arranged if an adult has not died, but the safeguarding board knows or suspects that the individual experienced serious abuse or neglect.

The statutory guidance states that something can be considered serious abuse or neglect, where, for example, the individual “would have been likely to have died but for an intervention, or has suffered permanent harm or has reduced capacity or quality of life” as a result of the abuse or neglect.

A SAB can also arrange reviews in any other situations involving an adult in its area with care and support needs.

In another case, “the impact of austerity measures” on the care home had limited the opportunities available to a man, which had in turn affected his quality of life.

Almost all the SARs identified concerns about how agencies had worked together.

‘Organisational abuse’ 

The report also analysed the nature and characteristics of the SARs.

It found that more cases involved men and just under half of the reviews related to people who were living in a group setting, mainly residential care.

It also found that organisational abuse was the most common form of abuse present in the reviews. This is defined by the Care Act statutory guidance as including neglect and poor practice within a care setting, or in relation to care provided within a person’s home.

The second most common form of abuse was self-neglect, which the report said reinforced recent research findings about the complexities and challenges of this aspect of safeguarding.

The report concluded that learning from safeguarding adults reviews is “rarely confined to isolated poor practice on the part of the practitioners involved”. Instead, findings from the 27 reports showed that weaknesses existed in all parts of the system and there are structural, legal, economic and policy challenges that affect staff across all agencies and boroughs.

With heavy restrictions still in place extended incorporating Xmas, Lincolnshire Partnership Trust clearly are not up to date with the law – see below:

Visiting Report December 2023

https://www.gov.uk/government/consultations/visiting-in-care-homes-hospitals-and-hospices/outcome/government-response-to-the-consultation-on-visiting-in-care-homes-hospitals-and-hospices

It is all very well and good to go down the legal route and ban visitors but in the event of this, what should be in place is an alternative. Yes LPFT or any other Trust should provide alternative arrangements/somewhere else where Elizabeth can meet myself or any other family members if they are not allowed onto ward premises . 

I am now banned for a further two weeks, given only 1 hour supervised only on Xmas Day, total breach of Art 8 and even Xmas Day and religion is not respected under LPFT. Another unsigned letter came via email attachment stating the restrictions would be continued agreed by the MDT and I would say to LPFT they need to rewrite their whole policy as they are clearly out of date with everything. I am sure the law has changed in this respect and I will write about this another time. No longer can the Bolam test be applied.  

I am actually now thinking more and more that I myself am a victim of ultra vires acts and therefore I would be justified to take out a Judicial Review.

I reassured Elizabeth I would go to any lengths to do what is necessary to bring about accountability and look at the way staff are acting ultra vires whilst the Trust do nothing to intervene. They have done nothing but completely abuse the law and in particular MHA, MCA and HRA law.

Important Case Law on Denying Patients the right to order food and have food parcels externally

The other day Elizabeth told me that she was refused ordering food by Elizabeth, a nurse on the ward. She was starving hungry as she has once again been missing meals on Castle Ward and a ban was in place as punishment for being hostile, meaning she could not go out at all.  It is important for members of staff to know about the law and that the following is all about denying patients the right to have food parcels and to order food from outside. If Elizabeth is allowed to miss meals she is not going to feel her best what do they expect! On the first occasion it became evident I was banned I had brought a meal for Elizabeth to make up for not being allowed out to the Carlton Centre with myself and a friend. I was told quite clearly that there was no way food could be allowed onto the ward as staff did not know where it ha come from and this could have been proven of course. Not only did ill-informed nursing staff turn away the meal I brought as a consolation for missing her s17 leave, they did not have a clue about the law and here it is below –  Here is another interesting piece for LPFT to study and to review their whole policy in line with the latest or they could have to bear the consequences.

L v Board of State Hospital (2011) CSOH 21; 2011 SLT 233 - the hospital had been ultra vires in denying patients the right to have food parcels and to order food from outside.

A consultation argument succeeded in the unusual case of L v Board of State Hospital [2011] CSOH 21; 2011 SLT 233 where a decision of the board of the state hospital placing restrictions on patients’ food and drink fell to be reduced as the board had failed to consult the patients as required in terms of the Mental Health (Care and Treatment) (Scotland) Act 2003 s.1. Limitations arose from the nature of the hospital, but only did so because they were justified in terms of the European Convention on Human Rights 1950 Art.8(2): the loss of control over those aspects of life which would otherwise be under a person’s sole and direct control were all concominants of the justifiable deprivation of liberty which followed on imprisonment or detention in the state hospital. 

The board decided that visitors would no longer be allowed to bring food parcels for patients, and patients would no longer be allowed to order food from outside sources, other than one take away meal a month. The ultimate reason for recommending the changes related to patients’ health, and issues with obesity. L sought reduction of the decision on the basis that the board had failed to consult the patients as required in terms of the Mental Health (Care and Treatment) (Scotland) Act 2003 s.1, and, it being a public authority for the purposes of the Human Rights Act 1998, the decision constituted a breach of L’s rights under the European Convention on Human Rights 1950 Art.8. The board relied on the notification of changes to the availability of snacks and refreshments at a single meeting of the Patient Partnership Group (PPG), attended by 12 patients, and an email from the hospital’s lead dietician (D) referring to the response of patients when asked about the nature of items they purchased from the hospital shop, and the reason for their purchase. 

L submitted, inter alia, that interference with his right to choose what to eat and to restrict what had otherwise generally been available to him was an interference with his right to respect for his private life and home, and the exception based on the protection of health and morals did not entitle the board to act as it had, as that referred to action necessary for protection of public health in general. 

Lady Dorrian decided that the board had not been entitled to reach the decision.

(1) From such consultation as had taken place, it appeared that patients had been opposed to restrictions on external purchasing but their views had not been recorded or presented to the board prior to its decision. Moreover, it had been recorded that patients felt that visitors should continue to be able to bring in parcels.

(2) There was no indication that D had advised patients of the proposals which were being considered, or that she had asked them to give their views thereon. 

(3) The PPG meeting had failed to have an opportunity to consider the actual proposals made to the board in relation to visitors. The recommendation put to the meeting was simply that visitors should not be allowed to bring food into the hospital, and the rationale for that was said to be infection control and storage space, which was an explanation that played no part in the board’s decision. Further, it appeared that the issues discussed on external purchasing related to limits on spending rather than an outright ban. 

(4) It was highly questionable whether even such feedback as was obtained was properly put before the board and, in any event, such consultation did not enable patients to consider and to comment on the three options eventually put to the board regarding visitors. The option selected by the board in relation to purchasing did not appear to have been put before patients at all. Accordingly, the board had failed to consult as required by the legislation, and its decision fell to be reduced. 

(5) The opinion was expressed, that (a) although the state hospital was L’s home, it was not and could not be treated as equivalent in all respects to a private home, and while limitations did arise from the nature of the place, they only did so because they were justified in terms of Art.8(2). The loss of control over those aspects of life which would otherwise be under a person’s sole and direct control were all concominants of the justifiable deprivation of liberty which followed on imprisonment or detention in the state hospital, R. (on the application of G) v Nottinghamshire Healthcare NHS Trust [2009] EWCA Civ 795, [2010] P.T.S.R. 674 considered; (b) a person’s right to choose what they ate and drank was a matter in respect of which Art.8 was engaged, and the general restrictions which applied in the state hospital prior to the board’s decision were justified.

Thus, the additional restrictions which the board sought to impose had also to be justified, but it was unnecessary to pass further comment on the matter with regard to the views expressed by the court on the lack of consultation, except to say that a health reservation under Art.8 did not have to refer to public health. In general, it was perfectly capable of applying where one particular section of the community which required protection had been identified. 

MISSING MEALS

I complained about this two weeks ago and still it continues on a regular basis. Tonight Elizabeth told me she had not had either breakfast or lunch. She suffers extreme tiredness and has no quality of life thanks to LPFT. She also told me about the prone restraint and this is life threatening by either 3 or four men. I am quite disgusted. She then spoke about the CTR and that there were two ladies who concluded there and then she is in the right place in hospital. I asked Elizabeth to find out who these two ladies were as it would appear that the CTR has not been carried out correctly as it was finally done in Enfield and that is the reason why no-one in the family was invited. Her advocate from Voiceability was there but how comes they could put words in my daughter’s head and say “Castle Ward is the right place for her to be” or words to this effect. In my opinion it is the wrong place for anyone to be as there is nothing done correctly in terms of procedures, in terms of law, guidance and even their own Policy.

Research on Missing Meals:

“The researchers continued to fast mice for up to 24 hours, and then reintroduced food. The cells hiding in the bone marrow surged back into the bloodstream within a few hours. This surge led to heightened level of inflammation. Instead of protecting against infection, these altered monocytes were more inflammatory, making the body less resistant to fighting infection”

This should tell the clinicians at the PHC that missing meals is very bad for people with psychiatric disorders, however they were originally induced. Not that they listen!

Note heightened levels of inflammation again:

We already know that inflammation in the brain not only causes psychotic symptoms by interfering with neurotransmitter pathways but that it can block the receptors targeted by neuroleptic medication.

Missing meals also causes blood sugar fluctuations that can also cause psychotic symptoms. This, along with Elizabeth’s already established P450 deficiencies will create havoc with her state of health and with the ability of the drugs to work at target sites.

“The researchers continued to fast mice for up to 24 hours, and then reintroduced food. The cells hiding in the bone marrow surged back into the

bloodstream within a few hours. This surge led to heightened level of inflammation. Instead of protecting against infection, these altered monocytes were more inflammatory, making the body less resistant to fighting infection”

Clinicians at the PHC need to be aware that missing meals is very bad for people with psychiatric disorders, however they were originally induced.

Note heightened levels of inflammation again. We already know that inflammation in the brain not only causes psychotic symptoms by interfering with neurotransmitter pathways but that it can block the receptors targeted by neuroleptic medication. Missing meals also causes blood sugar fluctuations that can also cause psychotic symptoms. This, along with Elizabeth’s already established P450 deficiencies will create havoc with her state of health and with the ability of the drugs to work at target sites.

The practice of constantly giving her prn medication while allowing her to miss meals is ridiculous. If she was properly fed and hydrated this would probably not be necessary at all. Any nutritionist will tell you that missing meals interferes with the body’s ability to function and any pharmacist who is aware that the patient is not properly nourished will take that into account when advising on medication. They presumably are not bothering to tell the pharmacist that she is not eating.

The P450 cytochromes are activated or induced by food. A patient who is not eating will become a poor metaboliser. Elizabeth already is a poor metaboliser of the medications they are giving her, missing food can make that worse. Then in their usual ‘style’ instead of tackling the problem the attack the symptom with more prn. It is beyond foolish to allow a psychiatric patient to go under nourished. They should ensure that she consumes food at sufficient levels in every 24 hour period.

Cytochrome P450 induction properties of food and herbal-derived compounds using a novel multiplex RT-qPCR in vitro assay, a drug–food interaction prediction tool

Xue Fen Koe,1 Tengku Sifzizul Tengku Muhammad,2 Alexander Shu-Chien Chong,1,3 Habibah Abdul Wahab,1,4 and Mei Lan Tan1,5

Drug–food interactions or drug–nutrient interactions are gaining much attention recently as such interactions have the ability to influence patient outcome. These interactions need to be recognized, understood, predicted, and then managed as necessary as drug–drug interactions (Boullata ). Drug–food or drug–nutrient interaction is considered clinically significant if it alters therapeutic drug response and/or compromises nutrition status (Boullata and Hudson ; Boullata ). The severity of drug–food interactions can vary the same manner as drug–drug interactions. Specific food and nutrients are known to elicit changes in drug absorption, distribution, metabolism, and elimination (ADME) properties, often through specific mechanisms, and affecting the components of drug metabolism enzymes is common. For example, furanocoumarins from grapefruit juice such as bergamottin can cause irreversible inhibition of the cytochrome P450 enzyme, CYP3A4, mainly in the small intestine (Lown et al. ; Pirmohamed ).

Fasting-Induced Changes in Hepatic P450 Mediated Drug Metabolism Are Largely Independent of the Constitutive Androstane Receptor CAR

· E. M. de Vries ,L. A. Lammers,R. Achterbergh,H-J Klümpen,R. A. A. Mathot,A. Boelen,J. A. Romijn

Hepatic drug metabolism by cytochrome P450 enzymes is altered by the nutritional status of patients. The expression of P450 enzymes is partly regulated by the constitutive androstane receptor (CAR). Fasting regulates the expression of both P450 enzymes and CAR and affects hepatic drug clearance. We hypothesized that the fasting-induced alterations in P450 mediated drug clearance are mediated by CAR.

Impact of fasting followed by short-term exposure to interleukin-6 on cytochrome P450 mRNA in mice

Martin Krøyer Rasmussen a, Lærke Bertholdt b, Anders Gudiksen b,

Henriette Pilegaard b

, Jakob G. Knudsen b

The gene expression of the cytochrome P450 (CYP) enzyme family is regulated by numerous factors. Fasting has been shown to induce increased hepatic CYP mRNA in both humans and animals. However, the coordinated regulation of CYP, CYP-regulating transcription factors, and transcriptional co-factors in the liver linking energy metabolism to detoxification has never been investigated. Interleukin-6 (IL-6) has been suggested to be released during fasting* and has been shown to regulate CYP expression

Prone Restraint given by several Men 15.12.2023

Apparently Elizabeth refused the Clopixol depot today so 3-4 men pinned her face down to inject her. This is supposed to be her “treatment” under the MHA but what about the rest? Only a fraction of the quantity of drugs were prescribed under previous area and therefore no need to forcibly inject other drugs on top such as Procyclidine. Then on top of this are frequent rapid tranquilisations. Take a look at the article below. I have specifically asked CQC to check on the RT CP11 log. Also I do not think proper monitoring is going on.

A Questionable CTR

Elizabeth told me she had a CTR a couple of days ago but it sounded nothing whatsoever like a CTR. It was supposed to have an independent Chair and Elizabeth was supposed to have independent support. None of this was given. A nurse from the MDT was involved in supporting Elizabeth but at one point she told me she was just given a piece of paper to write on. Not one single member of the family were included and that would be my replacement NR who happens to be my younger daughter. Why wasn’t she invited at least. The conclusion of the CTR was that it was concluded that the best place for Elizabeth was on Castle Ward however this is even more questionable when every law has been abused by them and nothing has been followed correctly. Elizabeth told me CQC were on the ward but what are they doing about all of this – you never get to hear the outcome unless an institution is closed down because of total malpractice but this is what I see is going on under LPFT and it is all well and good the message being given “we take your complaint seriously”. Well how comes then this dreadful situation has gone on for over two years now under this DREADFUL area.

Whatever they think of me there is still such a thing as Duty of Care:

Here are just some of the NMC’s (Nursing Midwifery Council) guidelines/code of practice:

1. Treat people as individuals and uphold their dignity. To achieve this you must Supervised calls/visits/banning visits??? (even when instructed why isnt this questioned?)

1.1 Treat people with kindness, respect and compassion.   (Not kindness to punish someone by telling them you can no longer go to the shop in the grounds)

1.5  Respect and uphold people’s human rights (no-one has a clue about human rights yet continue to carry out their “duties” of a very questionable nature but for not wanting to challenge and no doubt the consequences under an area where there is no accountability.

3.4  Act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care. Poor practice is rife under LPFT and discrimination also rife and yet this has been going on for over two years now without any question.

4.4  Tell colleagues, your manager and person receiving care if you have a conscientious objection to a particular procedure and arrange for a suitably qualified colleague to take over responsibility for that person’s care How many would dare to do that under LPFT where I have received nothing but bullying but I suppose this may be an explanation as to why several male nurses stepped in to forcibly give the depot today under prone restraint. I very much doubt they even bothered to check for blood oxygen levels or vital signs. This was the clopixol depot and Elizabeth had refused it on this occasion. Why though are other drugs being administered on practically a daily basis with several “nurses” pushing her up against a wall. The other drugs are not part of the treatment under the MHA. To think CQC SOAD agreed all of this well if the effect is that Elizabeth is too tired to move to get out of bed for breakfast and for lunch something needs to be done and the CQC SOAD need to look at the whole picture and come back and do something about this as this SOAD is clearly not taking into account Elizabeth’s physical health.

5.5 Share with people, their families and their carers as far as the law allows the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand. A CTR should have included family members or at least the NR but not under LPFT. The Tribunal also went on in secret. It is the worst experience of my life and I have seen at first hand how carers are treated if you dare to raise concerns which I did not do for a very long time.

16  Act without delay if you believe that there is a risk to patient safety or public protection to achieve this you must: 

16.1 raise and if necessary escalate any concerns you may have about patient or public safety or the level of care people are receiving in your workplace or any other health and carte setting an use the channels available to you in line with our guidance and your local working practices. Not sure whether anyone bothers to raise concerns apart from me and several other patients at the former hospital of Ash Villa.  If things go wrong I can visualise staff sticking together to protect one another.

16.3 tell someone in authority at the first reasonable opportunity if you experience problems that may prevent you working within the Code or other national standards, taking prompt action to tackle the causes of concern if you can 

17.1 take all reasonable steps to protect people who are vulnerable or at risk from harm, neglect or abuse. I have not seen anything other than supporting each other to protect one another as in MDT where over 30 people are invited.

20.2 Act with honesty and integrity at all times, treating people fairly and without discrimination, bullying or harassment  this must be difficult to implement in an area where I myself have experienced ruthlessness and if you say or do something they do not like they use punishment.

24.1 Keep to the laws of the country in which you are practising

Treat people in a way that does not take advantage of their vulnerability or cause them upset or distress to take away a vulnerable’s person’s phone so they can no longer listen to their music, to deprive her from seeing photos of her cat and two weeks punishment for supposedly being hostile - it has caused distress without any doubt.  

never allow someone’s complaint to affect the care that is provided to them. Now this is an interesting point as I feel that the punishment dished out is aimed at me inflicting upon Elizabeth – how on earth can it be good for any vulnerable person to be cooped up on a ward 24/7 that is noisy, no psychological input and no encouragement to venture outside of what I can only call a prison.

Below is an interesting piece about Nursing staff mistreating vulnerable people – this seems to go on a lot and especially under the MH where a vulnerable patient can be drugged for no reason other than the convenience of nursing staff and when inspectors go onto the ward the first thing they should check is the CP11 RT log and go and speak to the patient instead of listen to a group of professionals who will stick together in the event of any adverse occurrence no matter what.

https://www.nursingtimes.net/news/hospital/nurse-on-trial-for-mistreating-and-drugging-stroke-patients-07-09-2023/

There has been substantial abuse to my vulnerable daughter over a period of over two years now and nothing whatsoever has been done about it. It makes you wonder how the current section can possibly be lawful by the way my daughter has/is being held. With such heavy restrictions it is no wonder patients ask to go to prison. If Responsible Clinicians do not know the law and decide that they will go down the legal route and use this as a form of punishment then this is impacting on a vulnerable person’s wellbeing and this is what I wish to contest. It also has a knock-on effect on the physical health of the family involved who have trouble getting through on the ward.

Unless very bad reasons for banning the person who has ultimate responsibility should know the law and be aware of human rights law and weigh up the benefits of such restrictions. 

The Responsible Clinician in this case states that Elizabeth is a free thinking person so from that they secretly recognise that Elizabeth has capacity but in order to control her and make decisions they have to rely on three completely flawed not fit for purpose capacity assessments done for another court case that was not even relevant. These were all done dishonestly so as to take control of Elizabeth’s life and try and send her the other side of the country so they can sever contact as I suppose this is a stepping stone in the severance of contact and completely unlawful.

There are so many other cases like mine where Xmas this year will be a very sad occasion and this is why I want to get the word out there to everyone affected that a few days ago this paper has come into effect:

Visiting Report December 2023

https://www.gov.uk/government/consultations/visiting-in-care-homes-hospitals-and-hospices/outcome/government-response-to-the-consultation-on-visiting-in-care-homes-hospitals-and-hospices

Just to reflect this has been the “appropriate care” provided under LPFT of practically daily injections and prone restraint by several men and missing meals evident at Ash Villa too, as well as banning visits and taking away the phone. It is not just the Oliver McGowan training they need but also on the MHA, the MCA and HRA and also medical ethics.

5 institutions – one out of area: namely Charlesworth Ward, Ash Villa, Cygnet Durham, Ward 12 and now Castle Ward.

Here are the Doctors employed/were employed under LPFT:

Dr Ismail

Dr Shahpasandy

Dr Ismail again

Dr Kumar

Dr Islam

Dr Suleman

Dr Greenall

Dr Memons This Doctor employed by Cygnet spoke nicely to me and seemed concerned for physical  health

Dr Khokhar

Visits from friends and relatives are considered crucial in the recovery and welfare of patients and research carried out on the severe restrictions imposed during the Covid pandemic indicates a clear detrimental effect on patients who missed visits from loved ones and friends. The impact on visitors has also resulted in an increased incidence of depression and anxiety being recorded. “I want to come home to live in the annexe through the court of protection. I miss my mum greatly and want to go home to her.” – note dated Friday 10th November.

Excluding or restricting visits should therefore be imposed only in exceptional circumstances where there are reasonable ground for believing that a visitor may have a detrimental effect on the patients therapy.

They are doing this as a punishment towards me but they are inflicting this punishment on my vulnerable daughter who does not want me banned and wants to come home at Xmas to see her cat. Likewise Lincolnshire Partnership Trust has destroyed my life and is destroying my health by their actions. It is unbelievable this is NHS “care”. There is no compassion, no feeling – they treat both carers and patients like dirt. That is my opinion anyway. There is clearly a culture of bullying here and my daughter’s life is at risk due to the fits she is suffering and low blood oxygen levels because of frequent injections and not forgetting missing of meals.

A decision to exclude visitors on the grounds of his or her behaviour or propensities must be fully documented and explained to the patient and where possible the appropriate person concerned. In the case of psychiatric patients the nearest relative should be informed of any visitor exclusions and supervision decision and if it is they who are excluded or supervised an explanation in writing is to be provided to them. The Nearest Relative has NOT been informed and nothing has been done properly. When I asked for an Impact Assessment they had not got a clue or else pretended they did not know. A nurse called Emily is going to speak to Elizabeth on Monday but I have notified her Advocate from Voiceability as I feel the advocate and solicitor she has been trying to contact time and time again should know about this.

A visitor may be excluded or restricted to visits under supervision if the visit is considered to be anti-therapeutic (in the short or long term) to an extent that a discernible arrest of progress or even deterioration of the patient’s mental state is evident or can reasonably be anticipated if contact is not restricted. This is being used as an excuse. There is no therapy and never has been. The fact is they want to sever contact with me and they are doing so without thinking about the rest of the family who cannot get through on her phone. Fact is I have discovered there has been a bad accident at Ash Villa and Elizabeth has shared information with me. The other fact is she misses home and wants to come home and has told everyone to this effect. Today she phoned me in the presence of a HCA. She complained of being starving hungry and missing meals has been going on for some time.

An impact assessment should be carried out in consultation with the patient to assess the impact of any denial or restriction of visits on the patient’s welfare. Where a patient lacks capacity or is impaired as to their capacity an assessment by a suitably qualified best interests assessor should be carried out to assess any negative impact that denial or restriction of visits may have on the patient.

No impact assessment has ever been carried out. I have asked them to put everything in writing.In addition to acting ultra vires with decision to rescind all S17 ground leave (punishment towards me) but inflicting upon Elizabeth’s health and welfare, today it became evident her phone has been taken away again by Castle Ward, Peter Hodgkinson Unit, LINCOLN COUNTY HOSPITAL RUN BY LPFT (LINCOLNSHIRE PARTNERSHIP TRUST, CEO namely Sarah Connery. The Trust is therefore vicariously liable for breaches of human rights law on the part of certain individual employees.

Today’s phone call from Elizabeth was in the presence of HCA Emma (a very nice young lady) in fact most of the HCAs are very nice and so are the OT’s so I told Elizabeth try not to get upset with those directly helping her. Via another HCA called Harry I overheard all S17 Ground leave was rescinded by Lucie Ann Waby, senior nurse. I can only assume recent restrictions are imposed by RC (Responsible Clinician) Dr Waqqas Khokhar who imposed the original on the grounds I am “a bad influence” “you are impacting on therapy” all said to be in line with Trust Policy and Guidelines. What therapy exactly might that be? There is no psychological input – said to be unnecessary in her case for the past 2 years. On virtually a daily basis Elizabeth is injected with RT when not even displaying behaviour of a nature that would warrant this. She clearly has something physically wrong to have what looks like a fit lasting from 2.00 pm until 7.30 pm and has a cyst on her head they do not want to do anything about. She has sent me several photos of plasters recently and has told us all that the injections really hurt her and they are given by male staff on occasions and often for no reason.

When having these “fits” never experienced before her blood oxygen levels are of great concern and very low and this is life threatening. Her body felt cold and clammy.

The Human Rights Act protects those whose rights are being abused and in this case that would include myself and my daughter Elizabeth. The following would apply in our case:

Art 8 HRA – right to privacy and right to family life

Art 2 HRA – right to life

Art 5 and section 6 HRA

Today, Sunday 26.11.2023 I received a call from Elizabeth, having previously not been able to get through to her when we pay a monthly phone contract via Vodafone. This is because her phone has been taken away yet again by LINCOLNSHIRE PARTNERSHIP TRUST CASTLE WARD LIKE IT HAD BEEN AT ASH VILLA.  Elizabeth is being treated like a prisoner whilst being sectioned under S3 MHA just like she is on a DoLs. They are acting ultra vires.

A senior nurse called Lucie Ann Waby has already imposed enormous restrictions. I heard this confirmed in the background of a call when Elizabeth phoned me a few days ago. HCA Harry said she could not go to the shops in the hospital grounds and the name Lucie was mentioned. I then phoned Castle Ward and this was confirmed. It was further confirmed by text message from Elizabeth that Senior nurse Lucie Ann Waby was rescinding her tiny bit of leave given. I told Elizabeth “do not react against – I would be doing something about this.” “it is not you but me they are punishing” but what is bad is they are using my vulnerable daughter as a tool to punish me.   On behalf of so many others who are being abused on the basis of human rights under shocking NHS care I will do everything I possibly can in this matter as it is one that is affecting me also and inflicting upon my health and wellbeing physically. I asked Elizabeth what she had been doing on the ward lately.  She is said not to engage in things but from certain papers she has shared that is completely untrue.  She likes cooking and has always wanted to be a chef since age 9.  She likes art and crafts.  She likes the OT’s on the ward and gets on OK with HCAs.   We are talking about senior members of staff here who are behind these rules and acting ultra vires. Elizabeth said a nurse call Emily is coming to see her on Monday – dont know what Emily will be talking about but I pointed out to Elizabeth that everything needed to be put in writing. They are clearly not looking into her health and wellbeing and what impact such heavy restrictions are having.

Mobile Phones and Deprivations of Liberty 

January 31, 2023

Is depriving a person of their mobile phone depriving them of their liberty? That was the very 21st century question confronting a High Court judge recently. Whilst his analysis concerned the position of a 16 year old, his conclusions apply equally to adults, writes Alex Ruck Keene KC (Hon).

It was common ground between the local authority and the Guardian that the significant restrictions to be placed upon the ability of the 16 year old in question, P, to use a mobile phone and other devices gave rise to a state imposed confinement to which she did not consent, and hence a deprivation of her liberty, which the High Court could authorise by exercise of its inherent jurisdiction.

MacDonald J, however, whilst acknowledging that this had been the practice to date (including by himself), decided in Manchester City Council v CP & Ors [2023] EWHC 133 (Fam) that it was necessary to consider the question in more detail, and reached the opposite conclusion.

Importantly, and identifying a point which is sometimes missed, MacDonald J made clear at paragraph 26 that the caselaw confirmed that “in this context, and historically, the concept of liberty under Art 5(1) of the ECHR contemplates individual liberty in its classic sense, that is to say the physical liberty of the person,” and that the reference to “security” in Article 5 “serves simply to emphasise that the requirement that a person’s liberty may not be deprived in an arbitrary fashion.” He noted that rule 11(b) of the UN Rules for the Protection of Juveniles Deprived of their Liberty also emphasised the concept of physical liberty,[1] defining deprivation of liberty as “any form of detention or imprisonment or the placement of a person in another public or private setting from which this person is not permitted to leave at will, by order of any judicial, administrative or other public authority.”

MacDonald J further identified at paragraph 37 that restrictions upon on access to, or the use of, telephones were most commonly considered by the ECtHR in the context of the Article 8 ECHR right to respect for private and family life, rather than under Art 5(1).

Applying these principles, MacDonald J recognised that:

45. […] for P, in common with many other young people of her age, her mobile phone and other devices constitute a powerful analogue for freedom, particularly in circumstances where she is at present confined physically to her placement. Within this context, I accept that the possession and use of her mobile phone, tablet and laptop, and her concomitant access to social media, is likely to equate in P’s mind to “liberty” broadly defined as the state or condition of being free.

However, MacDonald J continued:

However, this court is concerned with the meaning of liberty under Art 5(1) of the ECHR. Whilst I recognise that the Convention is a living instrument, which must be interpreted in the light of present-day conditions (see Tyrer v United Kingdom (1978) 2 EHRR 1 at [31]), over an extended period of time the Commission and the ECtHR have repeatedly made clear that Art 5(1) is concerned with individual liberty in its classic sense of the physical liberty of the person, with its aim being to ensure that no one is dispossessed of their physical liberty in an arbitrary fashion. The Supreme Court proceeded on that formulation of the proper scope of Art 5(1) in Cheshire West.

That meant, in turn, that:

46. […] in my judgment the removal of, or the placing of restrictions on the use of, P’s mobile phone, tablet and laptop and her use of social media do not by themselves amount to a restriction of her liberty for the purposes of Art 5(1). On the evidence currently before the court those restrictions do not act to deprive P of her physical liberty, but rather act to restrict her communication, so as to ensure her physical and emotional safety. The evidence set out earlier in this judgment demonstrates that the effect of those restrictions is to limit P’s communications with peers who might encourage her to engage in bad behaviour, with strangers who may present a risk to her and with family and friends when she is in a heightened emotional state. Within this context, the restrictions on the use of P’s devices for which the local authority seek authorisation do not, in my judgment, by themselves constitute an objective component of confinement of P in a particular restricted place for a not negligible length of time. In the circumstances, whilst they are steps at times taken without P’s consent and are imputable to the State, those restrictions do not, by themselves, meet the first Storck criterion [i.e. that P is subject to continuous supervision and control and prevented from leaving a restricted place for a non-negligible period of time].

The local authority argued that the restrictions upon her devices formed an integral element of the confinement to which P was subject (in circumstances where she was under other, more obvious restrictions such as supervision and physical restraint to protect from harm). Whilst MacDonald J accepted that they might, at time, be said to form part of a regime of continuous supervision and control, he reiterated that they did not act to restrict her physical liberty. Rather, their effect was:

65. […] to prevent P broadcasting online indiscriminately, to prevent contact from those advising her how to frustrate steps the placement takes to stop her from harming herself and others and to prevent her sharing details online with those who may pose a risk to her and restricting contact with those against whom she has alleged abuse. There is no suggestion in the evidence currently before the court that those restrictions constitute a necessary element of the deprivation of P’s physical liberty or of the manner of implementation of that deprivation of liberty. For example, the evidence before the court does not suggest that the restrictions on the use of P’s mobile phone, tablet and laptop and use of social media are required to ensure the effectiveness of the current measures that do operate to prevent her from leaving the placement, or that without those restrictions the current measures that operate to prevent her from leaving the placement would be rendered ineffective. In these circumstances, in my judgment the restrictions in respect of P’s phone, tablet and laptop and on the use of social media do not, even when considered in the context of the other elements of the other restrictions for which authorisation is sought, constitute an objective component of confinement of P in a particular restricted place for a not negligible length of time. Accordingly, it would in my judgment be wrong to authorise them under the auspices of a DOLS order [2] simply because they form part of the total regime to which P is currently subject in her placement.

Some might be wondering by this stage why MacDonald J was quite so keen to make clear that the restrictions on P’s devices did not give rise to a deprivation of her liberty. The answer he gave at paragraph 50 was an important one:

The difference between deprivation of and restriction upon liberty is one of degree or intensity and not one of nature or substance. But there is nonetheless a difference and that difference can have consequences. As I have noted above, restrictions of the type being imposed on P with respect to the use of her mobile phone, tablet and laptop, and concomitant limitations on her access to social media, are most naturally characterised as an interference with her Art 8 right to respect for private and family life. When considering them as such, before a court could endorse that interference it would have to be satisfied that that interference was necessary and proportionate, pursuant to Art 8(2). If however, those steps were instead to be considered and endorsed by the court by reference to Art 5(1), the exercise under Art 8(2) would be bypassed in respect of steps that constitute an interference in an Art 8(1) right. It is important that the court be careful not to allow its jurisdiction to make orders authorising the deprivation of a child’s liberty by reference to Art 5(1) to spill over into authorising steps that do not constitute a deprivation of liberty for the purposes of Art 5(1), particularly where those steps might constitute breaches of different rights, which breaches fall to be evaluated under different criteria. It may well be that one of the reasons for ECtHR adopting the narrow interpretation of word ‘liberty’ under Art 5(1) in cases such as Engel v Netherlands, limiting it to the classic concept of physical liberty, was to reduce risk of the Art 5 exceptions resulting in a de facto interference with other rights, without proper reference to the content of those other rights.(emphasis added).

MacDonald J’s conclusion meant that it was necessary to find an alternative route to authorise the restrictions (assuming that such restrictions were justified). This alternative route, he found, lay in the operation of parental responsibility (in P’s case, by the local authority under its shared parental responsibility under s.33(3)(b) of the Children Act 1989, P being the subject of a final care order. MacDonald J found that, ordinarily, a local authority relying upon s.33(3)(b) Children Act 1989 to impose restrictions on the use of devices to protect a child from a risk of serious harm would not require the sanction of the court, he did accept at paragraph 60 that:

circumstances that contemplate the use of physical restraint or other force to remove a mobile phone or other device from a 16 year old adolescent, even in order to prevent significant harm, is a grave step that would require sanction by the court, rather than simply the exercise by the local authority of its power under s.33(3)(b) of the 1989 Act, not least because such actions would likely constitute an assault. I am further satisfied that, in an appropriate case and where an order under Part II of the Children Act 1989 would not be available where a child is subject to a final care order, it would be open to the court to grant the local authority permission to apply for an order under the inherent jurisdiction, separate to any order authorising deprivation of liberty, that declares lawful the steps required to effect by restraint or other reasonable force the removal from a child of his or her devices, provided it is demonstrated that their continued use is causing, or risks causing, significant harm and provided that the force or restraint used is the minimum degree of force or restraint required.

MacDonald J emphasised that the threshold for making such an order – separate from the order authorising deprivation of liberty – would be a high one, requiring “cogent evidence that the child is likely to suffer significant harm if an order under the inherent jurisdiction in that regard were not to be made” (paragraph 71).

Comment

MacDonald J’s decision is a very useful reminder of the limit of the concept of deprivation of liberty: in this context, liberty, importantly, is not another word for autonomy. As Lady Hale put it in Secretary of State for the Home Department v JJ [2007] UKHL 45 (at paragraph 57):

My Lords, what does it mean to be deprived of one’s liberty? Not, we are all agreed, to be deprived of the freedom to live one’s life as one pleases. It means to be deprived of one’s physical liberty […] And what does this mean? It must mean being forced or obliged to be at a particular place where one does not choose to be: […] But even that is not always enough, because merely being required to live at a particular address or to keep within a particular geographical area does not, without more, amount to a deprivation of liberty. There must be a greater degree of control over one’s physical liberty than that.

In passing, it might be thought to be of interest that Lady Hale was clear in 2007 that deprivation of liberty included an element of overbearing of the person’s will, but by 2014 considered in Cheshire West that a lack of MCA-capacity to consent to confinement was sufficient, even if the person appears to be content. If you want to follow that rabbit hole, you might find this paper of interest.

It is interesting, and reassuring, to note that MacDonald J reached the same conclusions as to the human rights allocation of restrictions upon devices as was reached some years ago in the Court of Protection context by Mostyn J in J Council v GU & Ors[2012] EWCOP 3531. That the judgment did not refer to this case is likely down to the fact that (for better, or, I venture to suggest, worse) parallel furrows seem to be being ploughed by those concerned with deprivation of liberty in the context of children and adults.[3]

Be that as it may, MacDonald J’s observations about the need to be clear about which rights are in play, and what considerations need then to be taken into account in identifying who can determine and on what basis whether or not the interference is lawful are trenchant.  They are also equally relevant in DoLS land in relation to adults.  They reinforce the fact that restrictions which are not specifically directed at restricting the physical liberty of the person are not restrictions which can be authorised under DoLS.   Such restrictions, whether they be upon devices, or upon contact, either need to be justified by reference to the (thin) legal cover available here under s.5 MCA 2005 or – more likely – need to be put before the Court of Protection so that the court can determine whether (a) such restrictions are in the best interests of the person; and (b) whether they are necessary and proportionate so as to satisfy Article 8(2) ECHR.

Alex Ruck Keene KC (Hon) is a barrister at 39 Essex Chambers. This article first appeared on his Mental Capacity Law & Policy blog.

[1] In passing, he could equally have noted that the interpretation of deprivation of liberty for purposes of these Rules derived from the interpretation of the concept for purposes of Article 9 of the International Covenant on Civil and Political Rights.  The Human Rights Committee’s General Comment 35 on Article 9 makes clear in paragraph 3 that “[l]iberty of person concerns freedom from confinement of the body, not a general freedom of action.”

[2] As a plaintive and probably forlorn plea, it would be really helpful if practitioners and the courts could stop referring to inherent jurisdiction orders as “DoLS orders” as it perpetuates confusion with ‘actual’ DoLS, i.e. administrative authorisation under the Deprivation of Liberty Safeguards in relation to adults in care homes/hospitals.

[3] An issue identified by Sir James Munby in 2018, discussing in a speech for Legal Action Group the case of D at the point between his decision in the Court of Appeal and the decision of the Supreme Court, noting that “these cases lie at the intersection of three different bodies of domestic law – mental health law, mental capacity law and family law – where judicial decision-making is spread over a variety of courts and tribunals which, by and large, are served by different sections of the legal professions too few of whom are familiar with all three bodies of law. The existence of these institutional and professional silos has bedevilled this area of the law at least since the earliest days of the Bournewood litigation. One day, someone will write a critical, analytical history of all this – and it will not, I fear, present an altogether reassuring picture.”

As for the Oliver McGowan Training I do not see how this Trust is even capable of learning anything with regard to how to treat a vulnerable person when there has been complete abuse of power and process. The impact on us has been tremendous since moving and all we have come up against is severe bullying yet they are rated good by cqc. It has been the worst experience of my life and the very worst treatment we have ever come up against and most shockingly this is NHS care and not private.

On 10th November 2023 Elizabeth wrote “My idea”

“I want to eventually come home to live with my Mum in the Annex through the Court of Protection.

I miss my Mum greatly and want to go home to her”

Elizabeth is now a virtual prisoner on the Castle Ward, Peter Hodgkinson Centre, LINCOLN COUNTY HOSPITAL, punishment on me but inflicted upon her. Total and utter cruelty. This is a disgrace to the NHS as a whole.   This will have knock-on detrimental effect on Elizabeth’s health and wellbeing especially with regard to deprivation of fresh air and exercise. The excuse given by Dr Waqqas Khokhar Responsible Clinician who has ultimate responsible for S17 leave is that I am apparently a “bad influence” and that the MDT of other 30 people agree that I am having a negative effect on ‘therapy/treatment”. From what I hear from Elizabeth this consists of practically daily injections of RT which is affecting her blood oxygen levels (recorded on very recent paperwork) and can be life threatening.  Private MRI scans done show concerns on several images certain doctors did not want her to see a Neurologist or have fresh scans done going back over 2 years detention. However the former area of Enfield were taking her physical health seriously and so all neurologist appointments were cancelled as unnecessary upon moving to Lincolnshire.  There has been no IMPACT ASSESSMENT done. When a decision has been made to ban someone or restricting someone in any way in terms of visiting an IMPACT ASSESSMENT should be done and everything put in writing with the Nearest Relative being informed. 

When is a healthcare professional’s act non-medical, and how might such non-medical acts be classified?

One approach, analogous to the substantive due process inquiry employed by  courts weighing the constitutionality of legislative acts, would involve consideration of the following questions: 

1) Is a legitimate medical goal being pursued? 

2) Are the means being employed legitimately medical? 

3) Are the goals and means appropriately related? Accordingly, a healthcare professional acts medically when employing legitimate and appropriate medical means in pursuit of a legitimate medical goal. 

In contrast, when the goals pursued or means employed are not legitimately medical, or when the two are not appropriately related, the act is medically ultra vires (“beyond the powers”)–that is, an act beyond the professional’s power or authority–and consequently non-medical. 

If an act designed to achieve an end such as restricting visits had a purpose of simply punishing the visitor, to the detriment of the patient then it would have no legitimate medical purpose.

Denying a patient activities that are beneficial to them in order to apply some form of sanction is a matter ultra vires.  This was the failing of the ‘token economy’ system used in psychiatric hospitals where patients were coerced into behaving in a particular way for favours. Not only is this a flagrant breach of the principlist ethics of beneficence & autonomy & possible non-maleficence but it represents a violation in many cases of the patients human rights.

Section 17 leave and visits from friends and relatives are rights not favours.

Medicating patient with prn medication for the purpose of keeping them quiescent is arguably a non-medical intervention and is often used to give staff a quiet time rather than to benefit the patient.  The usual reason given is that the patient was distressed.  There are many ways a distressed person can he supported without prn injections.  Giving drugs in the is way is both ultra vires and ultra fines.

Medically ultra vires acts may be further sub-classified depending upon which prong of the above trident is defective. Where the goal of the act, though achievable, is not legitimately medical, the act is medically ultra vires because of goal illegitimacy, or medically ultra fines (“beyond the ends”). 

Where the means employed are not legitimately medical, the act is medically ultra vires because of means illegitimacy, or medically ultra modos (“beyond the means”). Where the means and goals are not appropriately related, the act is medically ultra vires because of means-goals disjunction, or medically ultra nexus (“beyond the connection”). 

Medical futility (where the medical goal in question, albeit legitimate, cannot be achieved by the act under consideration) represents the paradigmatic example of the latter.

Elizabeth who is being denied the very basics of human rights under this dreadful Trust has made a specific request:

Can I be present in court Mum.  I said in front of Emma “yes you can” and both her and Emma or any other member of staff who would be accompanying Elizabeth should be booked into the very best of hotels seeing as LINCOLNSHIRE PARTNERSHIP TRUST HAVE PUBLIC MONEY TO BURN.  

THE HONOURABLE MR JUSTICE PETER JACKSON

Between:

THE LONDON BOROUGH OF HILLINGDON

Applicant

– and –

STEVEN NEARY (by his litigation friend, the Official Solicitor)

First Respondent

– and –

MARK NEARY

Second Respondent

– and –

THE EQUALITY AND HUMAN RIGHTS COMMISSION

“The DOL scheme is an important safeguard against arbitrary detention. Where stringent conditions are met it allows a managing authority to deprive a person of liberty at a particular place. It is not to be used by a local authority as a means of getting its own way on the question of whether it is in the person’s best interests to be in that place at all. Using the DOL regime in that way turns the whole spirit of the MCA on its head, with a code designed to protect the liberty of vulnerable people being used instead as an instrument of confinement. In this case far from being a safeguard the way in which the DOL process was used to mask the real deprivation of liberty which was the refusal to allow Stephen to go home”

Jackson J.

Manchester City Council v CP & Ors [2023] EWHC 133 (Fam)

Restrictions around a person’s access to their mobile phone or other device are not usually specifically directed at restricting P’s physical liberty. As such, they are not usually restrictions that can be authorised under a Deprivation of Liberty Safeguards (DoLS) authorisation.

Removing or restricting an individual’s use of their mobile phone is an interference with that person’s human rights under Article 8 ECHR (right to respect for private and family life). Any interference with that right would therefore need to be necessary and proportionate – either to safeguard and promote the person’s welfare or to protect the health and safety of others and decided under a procedure prescribed by law. A range of factors may need to be considered such as;

whether the person consents to the restriction,whether they lack capacity to do so but such restrictions are in their best interests and there are no objections to the same,whether the person is detained under the Mental Health Act and if so, the interplay between their mobile/device access and their mental health or associated risks,where the person is under 18, who has parental responsibility and what their views are,the extent, likely duration and impact of the restrictions on the person’s life,where the restrictions are significant and likely to be ongoing for some time, where there is an objection or for example where related physical restraint is required, whether court approval is likely to be required.

The necessary and proportionate elements require evidence not just an opinion. 

The Mental Health Act (MHA) Code of Practice provides some helpful guidance on this issue where the person is in receipt of in patient mental health care. Chapter 8 of the Code highlights the fact that patients should have every opportunity to maintain contact with family and friends by telephone, mobile, e-mail or social media. Hospital staff should make conscious efforts to respect the privacy and dignity of patients as far as possible, which includes communicating with people of their choosing in private. It goes on to state that when patients are admitted, staff should assess the risk and appropriateness of them having access to their mobile phone and other electronic devices and this should be detailed in the patient’s care plan. Patients should be able to use mobile phones and other electronic devices if deemed appropriate and safe for them to do so and access should only be limited or restricted in certain risk-assessed situations.

The MHA Code stipulates that mental health hospitals should have policies on the possession and use of mobile phones and other devices, and on the use of social media, which should not seek to impose blanket restrictions on patients.

Government to legally make visiting a part of care

Government announces proposed legislation on visiting in health and care settings
New regulations will make visiting a legal requirement for hospitals, care homes, mental health units and other health and care settings

Care regulator will have new powers to make sure providers are allowing families to visit loved ones
People in care homes and hospitals will be able to have visitors in all circumstances, thanks to the government’s plans to bring forward new legislation.

Health and care settings should be allowing visits, according to the guidance from the government and NHS England currently in place, but there are reported cases where visiting access is being unfairly denied.

As a result, the government is seeking views from patients, care home residents, their families, professionals and providers on the introduction of secondary legislation on visiting restrictions.

The new legislation will strengthen rules around visiting, providing the Care Quality Commission (CQC) with a clearer basis for identifying where hospitals and care homes are not meeting the required standard.

The government recognises the contribution that visiting makes to the wellbeing and care of patients attending hospitals, and residents of care homes, as well as the emotional wellbeing of their families and so is seeking views on what the new rules will look like.

For health settings, regulations will be reviewed in both inpatient and outpatient settings, emergency departments and diagnostic services in hospitals, to allow patients to be accompanied by someone to appointments.

Minister for Care, Helen Whately said:

I know how important visiting is for someone in hospital or living in a care home, and for their families. I know from my own experience too – I know what it feels like to be told you can’t see your mum in hospital. That’s why I’m so determined to make sure we change the law on visiting.

Many care homes and hospitals have made huge progress on visiting and recognising carers since the pandemic. But I don’t want anyone to have to worry about visiting any more, or to face unnecessary restrictions or even bans.

I have listened to campaigners who have been so courageous in telling their stories. I encourage everyone who cares about visiting to take this opportunity to have your say on our plans to legislate for visiting.

Minister of Health, Will Quince said:

Most hospitals and care homes facilitate visiting in line with guidance, but we still hear about settings that aren’t letting friends and families visit loved ones who are receiving treatment or care.

We want everyone to have peace of mind that they won’t face unfair restrictions like this, so we want to make it easier for the CQC to identify when disproportionate restrictions and bans are put in place and strengthen the rules around visiting.

It’s important that people feedback on the consultation, we want to make sure the legislation is right for everyone. If you’ve experienced unjust visiting bans, please share your experience.

Challenges around visiting were exacerbated during the COVID pandemic, with many health and care settings restricting and banning visits to stop the spread of the virus, ease pressure on the NHS and reduce the risk of transmission. Since restrictions were eased and there was a return to normality, many health and care settings have made efforts to return to pre-pandemic visiting. There are however still instances where, families and friends continue to face issues with visiting across the health and care sector.

The CQC does currently have powers to clamp down on unethical visiting restrictions, but the expected standard of visiting is not specifically outlined in regulations. Current guidance from government and the NHS is clear that all care homes and hospitals in England respectively are expected to facilitate visits in a risk-managed way, such as through the use of face coverings in the event of an outbreak or in the reduction of the number of visitors at one time.

Patricia Mecinska, Assistant Director of Patient Experience at King’s College Hospital NHS Foundation Trust said:

At King’s, our teams recognise the invaluable contribution that friends, carers and loved ones make to the patients under our care, including supporting us to provide care that’s respectful of our patients’ needs, so enabling them to make a positive recovery. Plans to involve care supporters in a more formalised way will be welcomed by many patients and will aid us in delivering our vision of providing outstanding care to patients and communities.

The hospital visiting guidance also includes an expectation that patients can be accompanied to hospital appointments when needed.

With the new legislation, the CQC will be able to enforce the standards by issuing requirement or warning notices, imposing conditions, suspending a registration or cancelling a registration.

Elizabeth has a full report on PTSD and she has consistently been denied the correct treatment and therapy.

MARTHA’S LAW, SECOND OPINION AND RECKLESS PRESCRIBING WITHOUT LOOKING INTO PATHOLOGICAL CAUSES

PRESENT AND PAST RESTRICTIONS

PSYCHOSIS AND THE IMMUNE SYSTEM

Holding Elizabeth a virtual prisoner is only going to impact on what has already been diagnosed in the past and been completely and utterly ignored by LINCOLNSHIRE PARTNERSHIP TRUST.

https://www.news-medical.net/news/20231106/Can-PTSD-deteriorate-womens-cardiovascular-and-neurological-health.aspx

For any others like me going through hell I want to share with you things that you cannot just find out through all helplines and charities and I intend to share all my templates for pre action protocol together with the correct form to use if your Trust/Council is acting ultra vires.

Please get in touch and I will be more than happy to help for anyone who is going through similar to us.

Professor Munir Pirmohamed knighted in Queen’s Birthday Honours – Articles – Research – University of Liverpool

Professor Pirmohamed, also Consultant Physician at the Royal Liverpool University Hospital, holds the only NHS Chair in Pharmacogenetics in the UK and is Director of the Medical Research Council’s Centre for Drug Safety Sciences. He has been recognised with a knighthood for his services to medicine.

The P450 tests should be given BEFORE PRESCRIBING to everyone and are available under the NHS so please contact me if you are refused such tests. I know they are adopted by NHS because I checked with Liverpool University only recently.

Some more good publications by Catherine Clarke below:

http://www.psychiatric-drug-effects.com/?

Carer_and_Patient_Mental_Health_Awareness_Series___Psychological_Therapies_Awareness  -its an eye opener. CBT ruling the roost  in NHS/DH;  seems drug companies fund this area, as CBT promote the drugs within therapy. 

CYP2D6 PM, CYP2C19 IM and SLC6A4 (5-HTT) Intermediate Serotonin Transporter SA/LA.  

P450 Liver Enzyme Tests for Elizabeth:

It is also no wonder Elizabeth changed beyond recognition also on Prozac and a multitude other drugs – in fact all have had a non existent or very bad effect.  It actually is reported in her file notes to this effect on all the drugs she has been experimented on and how they were ineffective.  I reckon she is a NON metaboliser in that case.

I turned to Liverpool University in desperation as I heard of the brilliant research being done by Professor Munir Pirmohammed.  This was around 2015. I asked if I could pay for Elizabeth to be tested but instead he went out of his way to help me and introduced me to a Professor in Rotterdam, Erasmus.  All it involved was having a cheek swab which I had done at the London Dr’s clinic and then a kit came from Rotterdam.  I was astonished the NHS could not help me at the time and was most impressed with the London Doctor’s Clinic and the results speak for themselves.

Elizabeth needs a close examination of the temporal lobes which I suspect will indicate inflammation.  If this is the case there is no wonder she cannot progress.  She almost certainly needs anti-inflammatory drugs far more than she needs anti-psychotics that actually cause inflammation.

If they are ignoring ghosting on the scans they are being negligent.  She is already established as a poor metaboliser because of low expression of P450 cytochromes.  Compound that with neuroleptic induced inflammation and we have a ‘perfect explanation’ of why they have made no progress in her mental health recovery. They have in fact not really tried at all.

Ignoring pathophysiological symptoms and markers is utterly absurd in any diagnostic system let alone the potential for consequences of ignoring them when administering medication. 

Refusing Elizabeth and other patients access to properly conducted tests and analysis is a scandal on a huge scale.  But of course they find it much easier to label people with catch-all and non specific stigmatising terms like schizophrenia.   

It is entirely possible that Elizabeth suffered a decreases in cerebral glucose metabolism at the time she was originally wrongly diagnosed with schizophrenia. 

That has been shown in the medial temporal lobe and increases have been seen in the subgenual anterior cingulate cortex in conjunction with reductions in mesolimbic connectivity, following an induced inflammatory response.  Trauma can induce this inflammatory response.

It is further possible that millions of young people have been so diagnosed because the NHS is obsessed with focussing solely on the psychiatric symptoms while positively avoiding pathophysiological and trauma induced causes of psychosis.

The mesolimbic system is precisely where dopaminergic activity is taking place and inflammation will obviously interfere with that, causing manifestations of psychosis.  If the inflammation had been addressed with anti-inflammatory drugs at onset a lifetime of psychosis and consequent drugging could have been avoided.

I suspect that Elizabeth will express C-reactive proteins and interleukin 6, just as she was shown to be a poor metaboliser.  Both of these are a result of her genotype and her treatment should have been based on these.  Undoubtedly the NHS will refuse to test her for these markers.

Instead they cling on to the outdated and hideous system of labelling people with schizophrenia and dosing them with anti-psychotic medication.   

If they have identified no physical health concerns it is because they are not carrying out the correct tests.  She will have some degree of endocrine dysfunction and potentially inflammatory conditions.  These all are affected by the use of neuroleptics and concomitantly affect the drug metabolism.  The drugs have a long established record of causing in some cases irreversible neural damage and physiological damage due to anti-muscarinic ARD’s.    

It is utterly preposterous to suggest that neuroleptics “aid mental health recovery”.  They are of use only in the short term in mental health crisis and the Harrow Study, and many others like it show that long term use is far less effective than withdrawal from the drugs at an appropriate time.  The drugs are a chemical straightjacket and I know of not one study in over 70 years of the use of these drugs that shows a patient being ‘cured’ or ‘recovering’.

Up-regulating or down-regulating dopaminergic & 5-HT neurotransmitters does not ‘cure’ illnesses that have a pathological cause.  The so called chemical imbalances they say they are treating have an underlying pathophysiological cause which they completely ignore.  Unlike the belief system that they adhere to there is a mountain of evidence in the medical literature that shows this.  They simply and blatantly ignore the effects of inflammatory conditions in spite of it being demonstrable that they cause disruption to neurotransmission function.  They ignore the P450 cytochromes and all long-determined methods of titration and serum count influencing minimum effective dose.   They ignore the fact that in over 100 years no one has been able to identify this ‘disease’ they call schizophrenia by any proper cause or aetiology.  For 40 years at least they have said it is genetic but apart from a few dodgy twin studies have never proved it and have never even identified the ‘defective gene’ that they blame.

The fact that they disregard neurological conditions as a cause of psychosis beggars belief itself.  The drugs they use target the neurotransmission system in the brain but at the same time they claim the mental illnesses don’t have a pathophysiological cause, except for this unproven and utterly unscientific claim of chemical imbalances.  Not one of the chemical imbalance ‘theories’ has ever identified what this idiotic mantra actually means.  What exactly is the correct ‘balance’ they are talking about?  Psychiatry is about 30 years behind neuroscience and all neurology researchers are expected to prove their assertions by scientific method.  Not so psychiatrists, who are quite happy with what they believe.  

If a cure for mental illness is ever found it will be found by neurologists and those researching neuroscience, not by the headshrinkers who are only interested in locking people away and doping them up to keep them compliant.  In general medicine we have lots of drugs that do actually cure people of their illnesses.  There is not one psychopharmaceutical product that comes anywhere near that. 

What is even more incredible is that their almost religious belief in psychopharmaceutical interventions carries on while they ignore the warnings, ADR’s and contraindications in the very formularies themselves. That is about the only evidence there is of ‘split personalities’, they believe in drugs but don’t believe in the science of pharmacology.  They ignore the licensing conditions imposed by the regulators and prescribe drugs that the formularies state should not be prescribed concomitantly.  If any of this crazed pseudo cult like behaviour was going on in general medicine we would have a casualty rate among patients that resembled that of the First World War.   

Clopixol depot, Haloperidal and Lorazepam:

Elizabeth is treatment refractive, to use that ridiculous expression, which in reality means that the patient cannot metabolise drugs due to CYP450 deficiencies.   In that case the Haloperidol and or the Clopixol will do no good at all.  A patient who is poorly expressing P450IA2 & P4502D6 will have difficulty metabolising or may not be able at all to metabolise Haloperidol.

P4503A4 is necessary for the metabolism Lorazepam 

Clopixol needs P4502D6 & P4503A4.

If those cytochromes are poorly expressed or not expressed at all the patient CANNOT metabolise the drugs then the patient may have metabolic syndrome which is characterised by weight gain, abdominal obesity, a decreased ability to process glucose (insulin resistance), dyslipidemia (unhealthy lipid levels), and hypertension.

This is probably why they do not want Elizabeth seeing endocrinologists, immunologists and neurologists.  They would observe these symptoms. 

Have had private tests done for Endocrinology and private MRI scans which show the above to be true. Elizabeth is being refused Endocrinology tests and she should also see an Immunologist and Geneticist likewise.

One of the best books in many years Deprescribing in Psychiatry,  written by psychiatrists and medical scientists (Gupta, Miller and Cahill) advises strongly against polypharmacy with anti-psychotic medicines.  Risk/benefit ratios shift dramatically to the risk in polypharmacy.  Clopixol and Haloperidol are both AP’s.  Most enlightened psychiatrists are now advocating abandoning polypharmacy and titrating to minimum effective doses, which in most cases are well down towards the lowest end of the daily dose

The doctors at Ash Villa and Castle Ward LPFT should read it.     

And perhaps this too.

Metabolic syndrome and mental illness

John W Newcomer 

• PMID: 18041878
• Am J Manag Care. 2008 Feb;14(2):76

Abstract

Patients with mental illnesses such as schizophrenia and bipolar disorder have an increased prevalence of metabolic syndrome and its components, risk factors for cardiovascular disease and type 2 diabetes. 

Although the prevalence of obesity and other risk factors such as hyperglycemia are increasing in the general population, patients with major mental illnesses have an increased prevalence of overweight and obesity, hyperglycemia, dyslipidemia, hypertension, and smoking, and substantially greater mortality, compared with the general population. Persons with major mental disorders lose 25 to 30 years of potential life in comparison with the general population, primarily due to premature cardiovascular mortality. 

The causes of increased cardiometabolic risk in this population can include nondisease-related factors such as poverty and reduced access to medical care, as well as adverse metabolic side effects associated with psychotropic medications, such as antipsychotic drugs. 

Individual antipsychotic medications are associated with well-defined risks of weight gain and related risks for adverse changes in glucose and lipid metabolism. Based on the medical risk profile of persons with major mental illnesses, and the evidence that certain medications can contribute to increased risk, screening and regular monitoring of metabolic parameters such as weight (body mass index), waist circumference, plasma glucose and lipids, and blood pressure are recommended to manage risk in this population.

Treatment decisions should incorporate information about medical risk factors in general and cardiometabolic risk in particular. In addition to the implications for individual clinicians, the problem of disparity in meeting healthcare needs for persons with mental illness in comparison with the general population has become an important public policy concern, with recent recommendations from the National Association of State Mental Health Program Directors and the Institute of Medicine. This article provides an overview of cardiometabolic risk in patients with major mental illness and describes steps for risk reduction.

27 March 2023

New study maps out links between psychosis and our immune system

In the largest study of its kind, research led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has identified some of the elements in our immune response that influence our risk for developing psychosis.

Published in Brain, Behaviour and Immunity, the study analysed blood samples from 325 people to assess the levels of 20 proteins which are known to be involved in our immune response.

Researchers found an association between the levels of certain proteins – cytokines – involved in inflammation and the risk of developing psychosis. Other proteins that are thought to affect the barrier between the blood and the brain were linked to whether those at risk later developed psychosis.

The research was part of the European Network of National Schizophrenia Networks Studying Gene-Environment Interactions (EU-GEI) Project and supported by the NIHR Maudsley Biomedical Research Centre.

This is the largest study of its kind to explore in depth how the patterns of the different proteins involved in our immune response might be connected to the risk of developing psychosis. Our analysis has highlighted some interesting relationships between individual proteins that are released by our immune system and the likelihood of whether someone at risk of psychosis will go on to develop the condition.Professor Valeria Mondelli, Clinical Professor of Psychoneuroimmunology at King’s IoPPN and lead author on the study

Detecting risk of psychosis early

Psychosis is when people lose contact with external reality, often causing considerable distress for the person and their family or carers. People with psychosis can, and do, recover and the likelihood of this happening increases the sooner treatment is started.

To enable early treatment, researchers and clinicians have developed methods to identify those who are more likely to develop psychosis and studies show that 1.7 per cent of the general population are at risk. However, around one fifth of those people at risk will develop psychosis which presents a key challenge in predicting whether someone will or will not go on to experience the symptoms of psychosis.

The identification of specific biological markers or signs in the blood that are linked to psychosis could help overcome this challenge. There has been increasing evidence that the immune system plays a role in psychotic disorders and the study aimed to assess whether levels of certain proteins and chemicals that are part of the immune response are different in those who at high clinical risk compared to the general population. Researchers also explored whether those who went on to develop psychosis had a distinct profile in their immune markers compared to those who remained at risk but did not experience symptoms.

Linking immune response to psychosis

Researchers assessed levels of 20 proteins involved in our immune response in the blood of 325 participants from nine different countries. At the beginning of the study 270 of these were assessed to be at high risk for developing psychosis and 56 were not. Participants were assessed over the next two years and during this time 50 of those people who were at risk went on to develop psychosis.

Analysis of blood samples showed that those at risk of psychosis had higher levels of two proteins or cytokines involved in inflammation compared to those not at risk. These cytokines are called interleukin (IL)-6 and IL-4. Within the at-risk group subsequent onset of psychosis was associated with higher levels of vascular endothelial growth factor (VEGF) and an increased ratio of IL-10 cytokine to IL-6 cytokine. VEGF is involved in regulating the porosity of the membrane between the blood system and our brain and this is the first time it has been identified as a possible indicator of whether people will move from risk of psychosis to development of the disorder.

AI prediction techniques

In order to explore the potential for using immune-related markers as a way to predict the onset of psychosis, researchers tested a machine learning approach on the data collected on all 20 immune system markers. The approach did not provide an accurate prediction of whether people at risk of psychosis would go on to develop the disorder but represents an innovative step forward in new techniques to inform our understanding of psychosis.

Professor Mondelli, theme lead for Mood Disorders and Psychosis at the NIHR Maudsley Biomedical Research Centre commented: “Although it would have been fantastic to have identified a way to predict whether people will develop psychosis based on markers in their immune response, it is not surprising that AI techniques are unable to do this using this data alone. The path to psychosis involves many other factors in both an individual’s psychology and biology as well as from society and it is likely that data from these aspects of people’s lives would also have to be incorporated into any machine learning approach to enable a prediction of whether they will develop the condition.”

The study ‘Serum immune markers and transition to psychosis in individuals at clinical high risk’ by Mondelli, V. et al. was published in Brain, Behaviour and Immunity.

For more information please contact Franca Davenport (Communications and Engagement Manager (part-time), NIHR Maudsley Biomedical Research Centre).

In this story

Professor Valeria Mondelli

Clinical Professor of Psychoneuroimmunology

PRESENT RESTRICTIONS

Just now I had a call from Elizabeth and we were on the phone talking when a member of staff was nearby named Harry. He is a Healthcare Assistant and I could hear every word said. I have written the following to: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net copying in the CQC. Deprival of S17 leave (not that ground leave is actually S17 leave has been threatened today 23.11.2023 by someone who I have been told is a nurse on the ward namely Lucy. S17 leave is a right not a privilege. I was told to write to the email address mentioned above however I see this as bullying and if such leave is deprived it would be ultra vires.

Dear All

I had a call  from my daughter around 19:00 hrs 23.11.2023.  At one point she was speaking to Harry, (HCA).  I overheard Harry say Elizabeth’s leave off the ward has been cancelled altogether.   He mentioned this was down to Lucy and because she was  “hostile”.  I  phoned the office (call witnessed) and spoke to Harry.  I asked what he meant by “hostile” and said that I had heard nothing to suggest she was hostile.  He said this related to a previous incident so I pointed out that in certain papers there were no previous incidents of hostility and he said that Lucy was behind the cancellation of all leave.

Call witnessed in entirety so I cannot be accused of being hostile/aggressive myself and neither can Elizabeth but the discussion was loud and clear plus was witnessed.

I note there are two Lucys on the MDT list.  I will leave that to you to find out but I want to hear back about the leave situation.  It is only right that you copy in the rest of the family and those included in this email.

CAMSELL, Lucy (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);

Waby, Lucieann (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);

I have no idea which one might be responsible for taking away the only tiny bit of enjoyment she has.   She has no quality of life whatsoever since being held on a virtual DoLs.   This is clearly being done as punishment.  

I am most concerned for my daughter’s health and wellbeing on Castle Ward.

I went to see my GP yesterday and I explained the current situation to them and how my daughter misses home and family and I am copying the GP in to this email as I informed them that I was concerned for her wellbeing and they are advised about the scan results also.

It is unbelievable cruelty to take away her small leave allowance and it is within NHS Guidelines to do an Impact Assessment on us both and send a copy of this to the Nearest Relative who is copied in.  I am wondering if the GP can do an Impact assessment on me and then Elizabeth’s advocate be involved in doing one for her as per NHS  guidelines.

Regards

Susan Bevis 

I presently have 2-1 visiting restrictions and am not allowed to see Elizabeth off the ward. This has only been allowed on one occasion and have been discontinued on the grounds that apparently according to the RC “you are a bad influence”. It was then said it was an MDT decision because of negative effect I have on Elizabeth but this is hardly true as I have no end of text messages from Elizabeth. I am the only visitor and one who comes on a weekly basis bringing her food and things she runs short of. She is allowed out only with 2 members of staff present to the main hospital to the shop and to the restaurant. Just been informed that someone called Lucy is rescinding her leave tomorrow – she works in the office.

She has seen nothing at all of Lincoln which is quite sad after all this time.

I was not included in ward rounds to begin with but now am once a week. Elizabeth does not like to attend and sometimes flatly refuses to go as there are so many people at these meetings. She does not like meetings or crowds of people.

Visits from friends and relatives are considered crucial in the recovery and welfare of patients and research carried out on the severe restrictions imposed during the Covid pandemic indicates a clear detrimental effect on patients who missed visits from loved ones and friends. The impact on visitors has also resulted in an increased incidence of depression and anxiety being recorded. 

Excluding or restricting visits should therefore be imposed only in exceptional circumstances where there are reasonable ground for believing that a visitor may have a detrimental effect on the patients therapy.   

A decision to exclude visitors on the grounds of his or her behaviour or propensities must be fully documented and explained to the patient and where possible the appropriate person concerned.  In the case of psychiatric patients the nearest relative should be informed of any visitor exclusions and supervision decision and if it is they who are excluded or supervised an explanation in writing is to be provided to them. 

A visitor may be excluded or restricted to visits under supervision if the visit is considered to be anti-therapeutic (in the short or long term) to an extent that a discernible arrest of progress or even deterioration of the patient’s mental state is evident or can reasonably be anticipated if contact is not restricted.

An impact assessment should be carried out in consultation with the patient to assess the impact of any denial or restriction of visits on the patient’s welfare.  Where a patient lacks capacity or is impaired as to their capacity an assessment by a suitably qualified best interests assessor should be carried out to assess any negative impact that denial or restriction of visits may have on the patient.

An Impact assessment has not been done on either of us in line with Guidelines.  

What is bad about the above is that Elizabeth has not had an Impact Assessment. Elizabeth is being treated as though she has no capacity and deprived meaningful contact with family. I am the only visitor on a weekly basis and she has mentioned she is not happy with current arrangements.

Today Elizabeth has told me to pass on:

“Hello readers”

Today I have seen the therapy dog called “Cookie” on the ward. This was very nice. She is a “female angel dog”.

I miss my cat and constantly think about him.

I was not well yesterday. I have very bad autism. My eyes are affected and I think this is the medication. It sounds strange but the sensation I get is that my eyes are not connected to my head and I get this weird feeling and sometimes pain to my eyes and hands. I have been shaky on my feet today but have been doing some dancing on the ward. I want to do some more cooking. I get headaches too.

I hope I can come home for Christmas.

The ward is very noisy. Cant stand the noise.

I have tried to ring my solicitor again to see when she is coming to see me.

The impact on me as well as others in my position of not being able to have quality time with their relative is detrimental. At 5.00 am this morning I could not sleep and was in contact with another mother who has a son trapped in a prison environment. It affects you sleeping. It affects you wanting to eat and can impact on your health in a serious way such as stroke and heart attack. Elizabeth is being held for the sake of it not because she is a risk to others but because for convenience they want to put her into a care home.

Elizabeth’s views have not been taken into account because of three flawed capacity assessments. Elizabeth has her own separate living accommodation.

There is lots to do in the small local community and it is friendly where there are art groups, music groups, we are surrounded by wildlife reserves, the sea, beach and people are very nice here and kind. There are all the basic shops you could wish for within walking distance. You can hire mobility scooters if disabled. You can go for miles along the promenade. Another interest of Elizabeth is gardening and cooking. There is a college nearby and wellbeing groups. There are sensory cafes and I chose this area because it is so different to London and now they do not want her to come home and are trying to sever contact by sending her away against her wishes and that of her family out of area when there is everything here in this area I could not provide before.

When you as a parent have tried everything and know what works because Elizabeth was able to travel to Australia for wonderful care and had psychotherapy there is a sense of guilt that it is your fault as if I had not moved we would not be in this position now and what chance do you have against over 30 people at MDTs, many not known to us and some have been involved in previous reports and safeguarding not of a nice nature. I knew the London flat was no longer any good and not once scrap of care provide by Enfield and there were experienced carers who wanted to work with Elizabeth. There was no bathing facility Elizabeth could use and my attempts to get this in place were to no avail.

I cant think which area is worse so many bad things happened in Enfield that made me decide to move. I do think in Lincolnshire it is more rigid and this is not how things should be for people under the MHA – it should be least restrictive. It is as though she is on a DoLs. However the minute we did move we were subject to investigations and allegations of abuse and all sorts to discredit you which in a way has backfired. I would not be writing this blog if we were treated fairly but also I am not alone in Lincolnshire – constituency of the Health Secretary herself the Rt Hon Victoria Atkins who I have approached to look into the problem of what could be termed as “Medical Kidnapping” of vulnerable people going on nationwide and there are other cases in my new area and the most remarkable case of a 90 year old lady who is fighting for her son which I would love to feature. The effect it all has on you is that some days you feel like giving up on everything. It feels like someone has died and I know some of my contacts are going through even worse. Elizabeth is 36 and to a certain extent can speak up for herself but there are those who cannot speak yet know what they want and none want to be far away from their families.

I have seen on Twitter response to what I put about the Oliver McGowan mandatory training when I said I could see nothing of the sort in this area and I am very pleased it has been mentioned. The training may have only been given to a select few but should be given not just to NHS employees but management as well as social services and their safeguarding teams – EVERYONE INCLUDING THE DOCTORS need to have this training as they should respect when a patient constantly says “I am autistic”. It is not me saying that as I think otherwise but nevertheless if these medical professionals were taking part in the Oliver McGowan training then people like me with their sons and daughters trapped on never ending sections might be treated more fairly and not have to endure years of punishment.

PAST RESTRICTIONS

From: Blake, Zoe
Sent: 11 March 2022 09:59
To: susan bevis
Subject: Sundays leave request

Good morning Susan

I hope this email finds you well.

With regards to your request for section 17 leave on Sunday to visit Sleaford church.

On this occasion Section 17 leave for Sleaford church has not been granted.

If you would still like to Visit Elizabeth on Sunday Please let us know what time you would like us to book the family room from for a 1 hour slot.

Please book as soon as possible to save disappointment as we must insist the room is booked in advance.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday

From: Blake, Zoe
Sent: Friday, March 11, 2022 2:41:58 PM
To: susan bevis
Subject: RE: RELIGIOUS LEAVE FOR CHURCH NOT AGREED – WHO IS ACTING RESPONSIBLE CLINICIAN IN ABSENCE OF DR KUMAR AND DR SHAPASENDY

Good afternoon susan

I do apologise for any miscommunication Doctor Shahpesandy is the RC for ash villa and is acting as such today.

What time would you like to book the room for , Visiting is a 1 hour slot ( I have confirmed this prior to reply)  you are welcome to spend some or all of that time in the grounds but this would still require being booked in.

Two members of Staff would still be supporting the contact but will be at a distance to allow some privacy.

For any Medical concerns or questions please use the 15 Minutes exclusive allocated time given weekly to yourself to address the doctors.

For any Complaints please Contact Pals lpft.pals@nhs.net

Anything else please don’t hesitate to contact me as your point of contact.

Emails to Multiple people within the LPFT organisation will not be answered.

If Emails are sent to myself please allow 72 hours for me to respond, responses will be given within working hours of 09.00-17.00pm

My emails, Direct line and Mobile numbers are:

Warm regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday 09.00-17.00 pm

From: susan bevis
Sent: Friday, March 11, 2022 2:49:00 PM
To: Blake, Zoe
Subject: Re: RELIGIOUS LEAVE FOR CHURCH NOT AGREED – WHO IS ACTING RESPONSIBLE CLINICIAN IN ABSENCE OF DR KUMAR AND DR SHAPASENDY

Dear Zoe 

As I have said before the church service is at 10.00 am.  I have notified the church that my daughter is being deprived her religious rights by dr shapasendy 

Sent: 28 March 2022 22:39
To: susanb
Subject: Re: Limbic system update

Susan

Elizabeth does have capacity to consent to those tests.  I am a senior lecturer in medical ethics and law and since this study is to determine possible treatments for Elizabeth it is perfectly OK to carry them out.

I would have hoped that medical practitioners would have known that. 

—–Original Message—–
From: susan bevis
To: BLAKE, Zoe (

Sent: Mon, 28 Mar 2022 19:05
Subject: Limbic system update

Hi Zoe

Are you trying to say that my daughter has no capacity?

Where is the study being done and who do I contact to get the necessary forms?

Elizabeth has agreed witnessed by more than one family member.

I look forward to receiving the necessary forms.  The tests are very important I am sure you will agree and this has already been agreed by Dr Shahpesandy in any case.  His important research needs to be widely publicised and I have proof she has already agreed.  The more people who know about his research the better as this could widely benefit more than my daughter.

The entire family are witnesses to this consent in any case.  

Regards

Susan Bevis

NEAREST RELATIVE, POA, MCKENZIE FRIEND AND MOTHER

Sent from Mail for Windows

From: Blake, Zoe
Sent: 28 March 2022 17:35
To: susan bevis
Subject: Limbic system update

Afternoon susan

I have spoken with Dr Shahpesandy and the bloods that need to be taken for the Limbic system are not able to be Done as it’s as part of a study, and the study requirements stipulate that the patient must have capacity to consent to have those particular bloods taken.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday 09.00-17.00 pm

From: susan bevis
Sent: 28 March 2022 09:41
To: Jackson, S (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); s.jackson@lpft.mha.net; s.twist@lpft.mha.net
BLAKE, Zoe
Subject: Manager’s Hearing for Elizabeth 12.2.1987

Dear ********

As Nearest Relative for Elizabeth Bevis I would like to call a Hospital Manager’s Hearing as soon as possible.

Please inform everyone above of the date of this Manager’s Hearing.

Thank you.

Kind regards

Susan A Bevis

Mother, Nearest Relative, POA and McKenzie Friend for Elizabeth

From: Blake, Zoe
Sent: 22 March 2022 11:37
To: susan bevis
Subject: RE: ELIZABETH’S PHONE

Good morning susan

I have been down to see Elizabeth and her phone is in her locker.

I have been to Elizabeth and asked if she would like it and she asked that I Leave it in the locker.

If you need anything else don’t hesitate to let me know.

From: susan bevis
Sent: Tuesday, March 22, 2022 1:16:48 PM
To: Blake, Zoe Bevis
Subject: Re: ELIZABETH’S PHONE Re: MP/2022/03502

I can see right through everything zoe please don’t bother to excuse matters.  

You most certainly do not appreciate anything to do with how I feel.   

I did not ask Elizabeth to phone me but there are other family members who might wish to call so please just give her back the phone anyway ok.  What is the problem with that?

Regards 

Susan

From: Blake, Zoe
Sent: Tuesday, March 22, 2022 1:12:09 PM
To: susan bevis
Subject: RE: ELIZABETH’S PHONE Re: MP/2022/03502

Hi Susan

I am sorry you are finding this Distressing  and I apricate you are paying for a phone contract.

I popped into see Elizabeth and expressed you had called and asked if she would like her phone to call you back and she declined.

It would not be Professional of me to force the phone onto Elizabeth if she has requested to have it placed in the locker.

Elizabeth has section 17 ground leave which you both used on Sunday when you visited.

Feel free to call me should you wish to talk further.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

To: Blake, Zoe s.twist>; Jackson, s.jackson
safeguarding@cqc.org.uk; CONNERY, Sarah PALS(LPT) (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) ;mhtcorrespondence@justice.gov.uk>
Subject: RE: ELIZABETH’S PHONE Re: MP/2022/03502

Dear Zoe

Yes there is one more thing you need to tell Elizabeth that her Family wish to talk to her.  We are paying a contract on the phone and want to wish her all the best for her T******* and where is the link I requested?

I know it is up to the J****and P**** but as I am not even mentioned as the NR I have contacted the T.O to let them know and also the fact that Elizabeth requested me to be present.

I have had no response from either S Twist or S Jackson who is in charge of the MHA Office.  

Elizabeth said she wanted me to attend on Sunday so if it is Lincolnshire Partnership Trust Ash Villa who do not wish for me to attend then I am not given a reason why Elizabeth cannot attend church either on Sunday or have the slightest bit of S17 leave.   These questions remain unanswered from the last ward round as despite the further meeting arranged at 2.00 pm no section 17 leave was granted.   This is constantly being disregarded why is that Zoe?

What exactly was your wording to my daughter when you asked her if she would like her phone or not?  Did you say that her family would like to speak to her.

Why did no one tell her on her Birthday that I waited all day long and no one even informed her that her Birthday presents were in a storage room.

Please therefore pass the phone to my daughter right now thank you so that her family can wish her good luck for today.  We are after all paying for the contract on the phone which should be with her at all times not charging or locked away in a locker room.    I heard a very different story when I spoke to my daughter after several days following her Birthday.  She had no idea I had left a card or presents.  What on earth is going on under Ash Villa?    The supervised restrictive visits akin to prison, the lack of contact.  I’ve been through all this before and my daughter’s words are “I will never get better in here”

Just to remind you further these are her actual words from her messages.

I do not think you have any idea how awful and upsetting this is and my daughter also told me that words are being put in her head.  That she is being put under pressure to sign papers and she has not even got her care plan.   

Thank you.

Regards

Susan Bevis

From: Blake, Zoe
Sent: 11 April 2022 12:30
To: susan bevis
Subject: RE: Elizabeth

Good morning susan

Thank you for your email.

I will of course report the shoulder scratching you are concerned about to the Nurse in charge today , thank you for Highlighting this to us.

To be clear the 2 x 30 Minutes is not your entitlement but the leave that The doctor is happy to give Elizabeth.

2 x 30 Minutes ground leave is E’s entitlement to walk round the grounds, with that said E is not restricted to use the ward garden for fresh air and enjoy the flowers and wildlife. But not without two members of staff escorting her for the most part and treated very differently to others. Was told by a HCA she was on a “different kind of section”. On my visits the two members of staff would follow if we got up to have a walk or to sit in the shade.

As you are aware when you visited Sunday you continued your visit with Elizabeth in the family room, this is because we are no longer closed to visits.

You are welcome to arrange a chiropodist to visit Elizabeth however I would suggest this takes place in our treatment room, you would not be granted access to this area of the ward. I had to pay for this privately as she was in pain and agony with her feet.

The only access to the ward for yourself is the family room and this has been agreed is NOT the right place for the appointment.

With that said maybe you would be willing to wait until the appointment had finished and visit Elizabeth after the appointment.

In order to have access to any recording or CCTV footage you would need to send relevant paperwork to Subject to access request form. Done this but despite standing directly under the CCTV for which I once had a licence to operate no footage was recoverable.

Please find attached.

Any health concerns you have we can raise with the doctors on Friday.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday 09.00-17.00 pm

From: susan bevis
Sent: 11 April 2022 11:21
<Anita.heera@publicguardian
Subject: Elizabeth

Dear Zoe

I visited Elizabeth on Sunday and quite frankly was shocked by her appearance.   She is starting to self harm by scratching herself and had a nasty looking red wound on her shoulder.

In addition I understand that she was still in pain with her feet.   I spoke to J about this and I tried to cut the toe nails myself but I could not.    My entitlement to see my daughter is just half an hour twice a week in line with Ash Villa’s Policy and I am wondering if it is OK for me to get a private chiropodist to visit Elizabeth in the grounds in addition?  I would like you to confirm this is OK for me to be there for just an additional half an hour as I do not want to run the risk of certain staff calling the police yet again.

As the recent allegations against me are ruining my character and also as I am being investigated as an unfit attorney by Public Guardian Office, I have had to tell my employers about all of this and will need to prove to them that none of these serious allegations are true so who do I contact within the Trust to get all recordings and CCTV footage of the alleged incidents for which A Bartlett has accused me of in her letter and especially for last Sunday.

I also received a message from my daughter which is very distressing.  Whilst lying in bed a lot during the day and not getting any exercise, held a virtual prisoner she is clearly going downhill physically and the doctor who visited her today has said he has muscle weakness to whole body which is no wonder why.   She constantly claims she is autistic also but no one is listening.

I would also like to know how many additional injections of Lorazepam are being administered to my daughter per week?    I am still the Nearest Relative and so am entitled to such information.

Also, what is Ash Villa doing about the i************ previously denied but recognised by Lincoln Hospital Charlesworth Ward?

I look forward to hearing from you.  In the meantime I will look for a private mobile chiropodist.

Regards

Susan Bevis  

From: Blake, Zoe
Sent: Friday, April 8, 2022 4:49:43 PM
To: susan bevis
Subject: Sundays leave

Good afternoon Susan

It has been raised that you wish for 1 hour ground leave on Sunday

This will not be granted.

The Section 17 leave that is in place is for 30 Minutes twice a week.

30 minutes has been taken today the reminder can be taken on Sunday.

To be clear you have 30 Minutes ground leave booked in for Sunday at 14.00pm

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Mobile: 07518294826

From: PALS(LPT) (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST)
Sent: 31 March 2022 10:57
To: susan bevis
Subject: RE: HOSPITAL MANAGERS Ward Round Today Please can Elizabeth have her phone back if charging fao ALISON WHITING

Hi Mrs bevis

I have checked with the MHA team. They are aware that you are delegating your nearest relative responsibility. But I had not exactly agreed to do so and besides Elizabeth did not want me to. Please be assured that the hospital managers hearing is being scheduled in accordance with the code of practice and relevant people will be informed in due course. I was excluded from the Manager’s Hearing but knew all about it thanks to Elizabeth’s invitation but was refused a link to attend.

kind regards

Ann Munro

Patient Experience Lead

From: susan bevis
Sent: 30 March 2022 21:01
To: PALS(LPT) (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.pals@nhs.net>; safeguarding@cqc.org.uk; Enquiries <Enquiries@cqc.org.uk>; Blake, Zoe
Subject: Re: HOSPITAL MANAGERS Ward Round Today Please can Elizabeth have her phone back if charging fao ALISON WHITING

Dear Ann

I have written to S Jackson and S Swift of the MHA office.  I have not had any response.  I wanted to discuss matters with the Associate Managers at a Manager’s Hearing.  As Nearest Relative I am entitled to call a Manager’s Hearing so please can you look into this as to the reasons why I am getting no response.  

Regards

Susan Bevis. 07498299069

From: susan bevis
Sent: 18 March 2022 12:13
To: PALS(LPT) (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.pals@nhs.net>
Subject: HOSPITAL MANAGERS Ward Round Today Please can Elizabeth have her phone back if charging fao: ALISON WHITING

Dear Alison

Today’s ward round made me feel slightly happier in that Dr Shapasendy offered to look at S17 leave and that the abnormalities on the scan will be investigated hopefully.

It is sad though that I am finding myself in exactly the same position as I was back in the former area and I see it as bullying and absolutely horrible.   There is no way that Elizabeth would have knowingly signed anything against me being NR as she has been constantly sharing information.  She was given papers to sign but says she did not read them.  They were given to her whilst she was recovering from covid and not feeling well at the time and she felt under pressure to sign. 

Anyway I hope you can help me in that I would like to know who the Hospital Managers of Ash Villa are please.     I am still the nearest relative and would like to contact the managers.   As you can see Mr H has added his voice to the complaint you have in response to the letter from A Bartlett Ward Manager.

Regards

Susan Bevis

From: GH
Date: 14 March 2022 at 11:27:58 GMT
To: aB
Cc: lpft.patientexperience@nhs.net
Subject: Letter from Alison Bartle to Susan Bevis

I have read the letter from yourself to Susan Bevis and would totally refute the allegations of rudeness or threatening behaviour by Susan Bevis.

I myself have witnessed such calls as I have been in the same room as Susan makes the calls.
I am also aware of the awful occasion on E’s birthday and having spoken to her direct how she was looking forward to receiving her birthday cake. Several friends and family in addition to myself spoke to E prior to her birthday and were given the same impression. It seems to have been out of character for her to not want contact.

I am witness to E’s care over many years and have to say this has been the most restrictive to date.
In every ward round interview E has been asked where she wants to live. She constantly says she wants to come home. We are working on providing her own safe self contained and peaceful accommodation. No way should she still be kept at Ash Villa but staff should be working towards providing care in the community.

I wish this email to be included in any complaints procedures as I would back Susan Bevis in stating that no threats have been made against members of staff, and that current restrictions are wrong, unhelpful and a backward step in E’s care. Indeed I would say that both myself and family members have stated that it has been staff that have been rude and dismissive. Have staff been told not to give information, perhaps they are bullied by senior staff.

On moving to Lincolnshire, Susan did all in her power to put medication injections ongoing in place for her care to continue. This included notifying the new GP and a trip to Urgent Care. The injections she was being reduced slowly and gradually no doubt because of the discharge note pointing to only physical health concerns.

The ward round recently appeared to be a deliberate attempt to stop attendance.

A reply to this email is not required but please ensure it is included in any complaints procedure.

Sent from my iPhone

If there are abnormal readings on a scan they have an absolute duty of care to investigate them and a psychiatrist is not qualified to do that.  If there is a lesion it needs treating as such.  Psycopharmaceutical interventions are not suitable to do that.

If that abnormal reading is in the pre-frontal cortex it could account for some of her behaviour and non-responsiveness to drugs.  

She needs that scan and a proper investigation of anything found, not just references to ‘abnormalities’

Sent from Mail for Windows

From: susan bevis
Sent: 06 April 2022 12:00
To: Blake, Zoe
Cc: safeguarding@cqc.org.uk; OPG Safeguarding Unit; OPG Customer Services;
Subject: Re: Ground visit

Dear Zoe

It was ********, witnessed by my daughter and  others who accused me of assaulting a staff member and I have a reference number from the police regarding this as they called police on me.  My daughter reacted to the accusations from ********** that I assaulted a member of staff and these allegations and/or my alleged threatening behaviour led to police being called.   

Everything is now on police records and I do not lie.    “Oh no my Mum did not assault a member of staff”.

Anyway,I am now in touch with Adult safeguarding regarding my daughter’s discriminatory treatment at Ash Villa in accordance with Lincolnshire Partnership Trust’s Policy so I was told. No doubt they will examine all in this connection.    Why did dr Shahpasandy say there was concerns regarding me and safeguarding.   Perhaps he can explain all to Adults Social services and CQC.    Elizabeth tells me Dr RM and one other has left all of a sudden.  So if there is no safeguarding one member of staff has said E is on “a different kind of section” that warrants such restrictions?  Which section?

Also please give E her letters back.  She told me they were taken and held in the office.

In addition why are staff supervising visits from the chaplain and advocate?

Surely you must know that it is unlawful for any member of staff to be present when a patient sees an advocate?

Anything like allegations of my threatening violent intimidating behaviour as alleged will be clearly captured on CCTV and should be examined before any more letters are produced by A Bartlett accusing me of such.   I used to operate CCTV so I would know.

Why is J questioning my daughter on the subject of me being nearest relative?  This is a legal matter and NOT a clinical matter?

As regards the Limbic tests which incidentally require a scan first –  these were agreed last ward round but no blood test or scans have been done and Dr RM did not come and see Elizabeth as planned now she is leaving apparently.  It is not a matter of discussing what had already been agreed but when will scan and blood test be carried out?

Also please keep me informed and rest of the family re the cancer tests for E plus MRI.

I will be having an advocate of very high standing soon by the way.

Regards

Susan Bevis

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From: Blake, Zoe
Sent: Wednesday, April 6, 2022 11:33:31 AM
To: susan bevis
Subject: RE: Ground visit

Good morning susan

If you don’t mind I will reply to both emails in one.

With regards to you requesting visits to E both Friday 8^th of April and  10^th of April  at 14.00pm this has been agreed.

E currently has 2 x 30 Minutes S17 ground leave a week, 30 minutes has been agreed for Friday and 30 minutes for Sunday, the Visits will be supported by 2 x staff members.

To address some of your raised concerns below.

1. There has been no mention from any member of staff that you have physically assaulted anyone, The nurse on duty has not made this allegation in any documented notes recorded for the day.
2. J is the wards clinical lead for the ash villa unit
3. As for the Limbic tests we can discuss this will Dr Shahpesandy at the meeting 10.00 on Friday.

Should you wish to discuss anything else further please don’t hesitate to call or email.

Warm regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

From: Tammy Waby
Sent: Wednesday, April 6, 2022 10:41:24 AM
To: susan bevis
Subject: RE: safeguarding referral outcome for Elizabeth

Morning Susan

I can confirm that from LCC there is no active safeguarding against yourself.

The only active safeguarding is the one that you have raised against Ash Villa

Regards

Tammy Waby

Principal Practitioner

Safeguarding Vulnerable Adults Team

Adult Care and Community Wellbeing Directorate

Sleaford Area Office,

105 Eastgate,

Sleaford

NG34 7EN

From: Blake, Zoe
Sent: 23 March 2022 09:59
To: susan bevis
Subject: limbic encephalitis

Good morning Susan

Doctor Shahpesandy has asked I make contact and advised you regarding your request to have limbic encephalitis looked into for Elizabeth

Doctor Shahpesandy has advised that he cannot justify an open scanner But if Elizabeth agreed to a blood sample being taken he will send it to the lab to test for limbic encephalitis. Do not know if this was carried out as Elizabeth told me no-one came to give her the blood test for the Limbic System and was expecting a Dr R to come. Even if this is not done – an MRI was not carried out and should have been immediately by the other ward under Dr Ismail where they tried to carry out safeguarding against me so I found out. At Ash villa the episodes started. There was an accident where she hit her head. It is only now a scan has been carried out and it is not reassuring it said normal as things have been identified from the private scan.

If you have any more questions regarding the above please raise it on Friday when you have your meeting with Dr Shahpesandy.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday 09.00-17.00 pm

From: Blake, Zoe
Sent: 07 June 2022 12:17
To: susan bevis
Subject: RE: Visit Tomorrow to Elizabeth

Hi Susan

I do hope it will be a nice day for you, as today is.

Scan update is Elizabeth is still refusing to go, and I will need to ask about the endocrinology for you. She would have gone if I had been allowed to take her but she was on restrictions as though in prison and I was on supervised 2-1 supervision. She would have gone if under an open scanner.

As far as I am aware other family members are aware we are monitoring phone use for a period of time.

Phone calls as well as phone use will be monitored for the agreed period of time.   You have no right to do this under law.

Our new RC  at ash villa is still Dr Kumar but may change in the near future, I will advise when this happens.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

DEPRIVATION OF LIBERTY – DO YOU HAVE A CASE?

May 3rd, 2016

This is an area of law which is undergoing significant change yet which is of profound significance for vulnerable individuals. The following provides a brief overview of the current position.

Human Rights Act 1998

Article 5 of the Human Rights Act 1998 enshrines an individual’s right to liberty.

However those deemed to be ‘unsound of mind’ can be deprived of their liberty by the state as long as this follows a lawful process. The phrase ‘unsound of mind’ would apply to individuals who don’t have capacity to make decisions and who are subject to the provisions of the Mental Capacity Act 2005.    GJ has done a best interest assessment and did not even tell Elizabeth –  she is I understand a nurse but from this assessment Zoe Blake stated that Elizabeth had no capacity regarding me attending a Manager’s Hearing when Elizabeth had invited me and told me the exact time of this meeting but disturbingly I as NR had been asking for a Manager’s Hearing for months only to be totally ignored by the MHA Office S Jackson Manager on every occasion.   This is most suspicious I am sure you will agree.  So the phone has been taken away from Elizabeth as a means of punishment to stop her from speaking to her family, a hospital run by the NHS under Lincolnshire Partnership Trust that has total unaccountability and rife with bullying as we have encountered.

Mental Capacity Act 2005:

The legislation sets out two separate processes for a person lacking capacity to be deprived of their liberty, depending upon the location where their care is received.

• Deprivation within the community:
  An authorisation can only be provided in relation to a deprivation within a community setting (eg the person’s own home or a supported living placement) by making an application to the Court of Protection.
• Deprivation within a care home or hospital:      YES trying to do that now behind our backs OOA.
  To authorise a deprivation of liberty within a care home or hospital, there must be compliance with the Deprivation of Liberty Safeguards (DoLS), detailed at schedule A1 Mental Capacity Act 2005    – SINCE FEB 2022???? to date  Please look into this CQC as when I checked no DoLs was in place for such restrictions to be lawful.

What is a Deprivation of Liberty?

In the leading case of P v Cheshire West & Chester Council (March 2014) the Supreme Court provided an acid test to decide if someone without capacity had been deprived of their liberty.

A person can now be said to be deprived of their liberty if:
1. they are subject to continuous supervision and control; and
2. they are not free to leave (with the focus being not on whether a person seems to be wanting to leave, but on how those who support them would react if they did want to leave.)   Exactly!  

Elizabeth is welcome back at home saving £3800 of public money wasted on imprisonment of the highest degree we have never thought possible under the NHS especially since she was not on a section CTO in the former area and was entitled to CTRs and at last was starting to be treated more fairly. 

An architecturally designed separate living accommodation within the back garden has been provided and had no objection to MH professionals visiting her.  She was previously being taken off the depot as her discharge note pointed only to physical health concerns relating to central nervous system – abnormal findings on scans..  We have had nothing but bullying under Lincolnshire Partnership Trust since our arrival.

You can be sure I have contacted social services to check to see if DoLs are in place and was clearly told “no” which makes all of this unlawful surely.    

The Position After P v Cheshire West

This truly was a watershed judgment which confirmed that many more people were deprived of their liberty than had previously been thought. The decision has now triggered a ten-fold increase in applications for authorisation and it is estimated that in the year 2015/2016 there will be:

• 176,000 standard authorisations by Local Authorities
• 30,000 authorisations by the Court of Protection

The increase in necessary authorisations has brought with it a consensus that the DoLS authorisation process for care home and hospital placements which is supervised by Local Authorities is no longer fit for purpose.

On this basis the Law Commission has been invited to review the safeguards and come up with proposals for an improved system. The Law Commission will produce their final proposals later this year.

In the meantime the Court of Protection has been seeking to produce a streamlined procedure to ensure that authorisations for deprivations within the community can be conducted efficiently and fairly given the increased workload.

A stalemate has unfortunately been reached in relation to individuals who do not have a friend or family member to participate in these court proceedings. A suitable representative for the individual is a required minimum procedural safeguard, but if a willing volunteer is not available then a paid professional must undertake this role. Unsurprisingly no public body has the resource available to meet this expense on the large scale anticipated.

In March 2016, Mr Justice Charles addressed this stalemate in the case of Re JM & Ors. He commented;

“I am sorry to have to record that in my view the stance of the Secretary of State (through officials at the MoJ and DoH) in these proceedings has been one in which they have failed to face up to and constructively address the availability in practice of such…representatives”

Judicial pressure has now been firmly applied to Central Government to come up with some solution to enable lawful process to be followed. Watch this space.

Unlawful Deprivations of Liberty & Damages Awards

It is a little known fact that an individual who has been unlawfully deprived of their liberty has a right to compensation.

Compensation should be awarded to an individual if the relevant deprivation of liberty process was not followed and, as a result, the individual was wrongly deprived or was excessively restricted.

Recent cases have attracted compensation in the region of £3000 – £5000 per month of unlawful deprivation, although this is guidance only and not binding.

It is widely believed that there are countless incidences of unlawful deprivations of liberty and that the potential liability for compensation claims could be highly significant.

Finally

The following are all signs that a deprivation of liberty may be unlawful:

• Local Authority forcing a person into a care home without consent or against their will
• The person or their family/friends not being happy with their care
• The person or their family/friends not being involved in the authorisation process
• The person or their family/friends not being told how to challenge or complain about their care
• Care which is overly restrictive/protective/risk averse

If you have concerns that someone you know may be subject to an unlawful or overly restrictive deprivation of liberty, please contact us to discuss whether we can help.

YES I DO UNDER LINCOLNSHIRE PARTNERSHIP TRUST FROM FEBRUARY 2022 TO DATE AND I ALSO CONSIDER THIS TO BE OF HUGE PUBLIC INTEREST CONSIDERING THE WASTAGE OF PUBLIC MONEY WHEN ELIZABETH COULD BE AT HOME RIGHT NOW AND WE ASKED FOR NOTHING APART FROM THE DEPOT TO BE CONTINUED IN NEW AREA WITH THE REDUCTION PLAN WE SHOWD FROM THE FORMER AREA.  WHY WAS THIS SO DIFFICULT LINCOLNSHIRE PARTNERSHIP TRUST AND BEHMHTNHS?

Please further see below as it is not just me who is unhappy about the treatment of my daughter whose life is being put at risk and it is recorded has low blood oxygen levels which could be life threatening.

Email below from Elizabeth’s father:

From: SB
Sent: 07 June 2022 16:55
To: susan bevis
Subject: Re: Yesterday’s Visit

When I arrived Elizabeth was in bed and didn’t want to see me as she didn’t want to see me at first She eventually came and saw me and we had a nice afternoon but she said she didn’t want to see me in her state. To be honest she was unresponsive but we did have a couple of laughs together don’t know how her oncology appointment went Elizabeth said it was up to her if she went but I tried to encourage her to go. I tried my hardest to get an update from doctors but they wouldn’t give me one as her condition when I saw her last to now hasn’t improved As for her flat I’ve sought advice as I cannot just remove her possessions I need her permission and she was in no fit state as of yesterday to give it as it has to be in writing Also where is her stuff going? I’m trying really hard to resolve but hitting too many obstacles Any advice gratefully received I also left Elizabeth some money which has been put in her locker for safe keeping!

Subject: Re: stress induced psychosis

They recognise that Elizabeth has stress induced psychosis but signally fail to recognise that they are the cause of much of the stress.  Do they not realise that being deprived of liberty is about as stressful as it gets.

Oh, and nasty tastes are an effect of the anticholinergic effects of the drugs.  Odd they don’t recognise that either.

Ask for a detailed explanation of why Elizabeth cannot be given s.17 leave.  Including a full appraisal of her current state of mind, not some utterly inadequate reference to outdated diagnostic criteria.  Section 17 leave is part of the rehabilitation programme and patients do not get better permanently locked up in a bizarre setting with hostile staff.

It is patently obvious that if Elizabeth does not want to engage with the staff in Ash Villa that they need to make better arrangements.  She clearly needs one to one psychotherapy with someone she can trust and who can break through the barrier that these mental health professionals themselves create.

No amount of incarceration in a locked ‘rehabilitation’ ward will improve her quality of life and all it will do is make her more determined to reject their interventions.  The idea that rehabilitation can be achieved in a lock-up is bloody ridiculous in any case.

As for schizophrenia I would suggest that the nurse needs to do some CME training.  Virtually no-one considers this an organic condition anymore and even where it is recognised as a disorder it is syndromal and not a condition with either aetiology or prognosis.  Thousands of those accused of being schizophrenics recover if properly treated.  Millions of others are simply drugged and locked up for convenience.  

I think that Elizabeth would show signs of recovery if she was given seven days leave and later attended as a voluntary patient.  If they cannot see that her defiance will not subside after this length of time they need to reconsider their chosen professions.

From: susan bevis
Sent: 06 April 2022 10:32
To: Tammy Waby
Subject: Re: safeguarding referral outcome for E (3500795)

Dear Ms Waby

It was Dr Shahpasandy who told me that concerns had been raised about me personally but I do not know by whom so because of the restrictions put in place whereby I have only supervised visiting rights I thought it has got to be either safeguarding or DoLs.  I was told my daughter could not even come out in the garden alone with me due to safeguarding concerns and her being on a different type of section.   At Xmas my daughter came home for a few days but became unsettled on her return from leave.  My daughter claims to be autistic.  She sees it as punishment and says she is injected sometimes because of her i***** and that certain staff are putting pressure or have done to get her to sign paperwork and also in relation to her nearest relative.  I was told they were doing everything in line with their policy and my daughter has complained that staff are behaving in an intrusive manner on the ward towards her.

I was told by dr Shahpasandy he is getting rid of me as nearest relative and that the POA investigation is an entirely separate matter.  

Safeguarding was commenced under Lincoln Hospital Charlesworth Ward but I thought this had been stopped.     

Regards

Susan Bevis.

From: susan bevis
Sent: 09 May 2022 12:01
To: Kumar, Praveen
Cc: BLAKE, Zoe
Subject: Main Points of Concern

Dear Dr Kumar

• My main concern is the very lengthy detention of my daughter now around 8 months who is suffering from comorbidity illnesses and deprived of exercise and fresh air under section, physically not benefitting from treatment that is so very restrictive and is declining physically.   It is about time she was released back home in accordance with her wishes because already she has developed what could well be breast cancer as a result of lack of vit D and exercise.

• I brought in a bird table that could be fixed to her window but still this has not been done.  This was suggested by a member of your staff.

• The environment is traumatic and distressing to my daughter of being locked up and what evidence is there that she has got well after so very long when it is clear from her messages to the family she is not gaining benefit.   She misses the home environment and her cat and everything she needs can be provided in the community.

• It has been suggested by **********, world leading expert on complex PTSD be involved in helping Elizabeth and I am quite prepared to pay for this.

Perhaps these issues can be discussed above all others at the forthcoming manager’s hearing and hopefully even sooner at a weekly meeting I am normally invited to attend.

Yours sincerely

Susan Bevis

Sent: Tuesday, May 24, 2022 1:28 pm
To: <susanb
Subject: Re: Managers hearing

You might be interested in the contents of this lecture, especially from slide 38 which explains the duties of Health Informatics Professionals.

As NR and with Elizabeth’s written consent you are entitled view the capacity report which must give full reasons for the decision on capacity.

Capacity is a legal construct and not a medical one.  As Elizabeth’s NR you can challenge the capacity report.  See the Bournewood case (also attached).

From: Blake, Zoe
Sent: 24 May 2022 10:12
To: susan bevis
Subject: RE: Managers hearing

Good morning Susan

I hope your well.

As advised on many occasions I am your single point of access, others will not reply but I will seek to gain the relevant answers and feed them back to you.

You will not be sent the link to the managers meeting today, Elizabeth has not given verbal consent to any member of staff although we have tried to gain this on many occasions.

Elizabeth has not been deemed to have Capacity to consent to your request on this occasion.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

There is no tangible reason why Elizabeth cannot be given s.17 leave and the refusal to allow her some respite form permanent confinement is positively detrimental to her mental health.

In a nutshell they are institutionalising her by stealth.  This is a human rights issue and not one for half-assed tribunals.  

This circumvents the institutional bias of the tribunals and involved decisions based on well establish law rather than the convenience of the staff at AV.  It is utterly absurd that she has not had some home leave in eight months. Even a restricted patient would have been allowed some leave.

From: Blake, Zoe
Sent: Friday, June 10, 2022 11:32 am
To: susan bevis
Subject: Unlawful Deprival of Liberty

Hi Susan

I do not best placed to answer about Dr Kumar but have asked the questions and will reply when I have the answers for you.

Our mental health nurses are qualified to undertake capacity assessments.

Informal capacity assessments can be done by anyone, for example if a patent needs help in finding something to wear we would assess what level of support is needed and help, this is a capacity assessment.

Formal Capacity assessment is for things more in-depth such as understanding rights under the section they are held at this point someone who is best placed  can undertake the capacity assessment. In most cases this will be done by mental health professionals from consultant to nurses.

I have received a message from GH and I will call him back when I have availability which should be this morning.

You have every right to call me based on me being your point of contact.

Elizabeth does not have set times in which she has her phone.

Elizabeth is offered the phone intermittently thought the day, when she accepts her hour starts, Elizabeth is permitted 2 hours per day.

When Elizabeth sees her phone she will see any missed calls and messages you have sent and she will reply as she wishes.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA 

From: Blake, Zoe
Sent: 07 June 2022 12:17
To: susan bevis
Subject: RE: Visit Tomorrow to Elizabeth

Hi Susan

I do hope it will be a nice day for you, as today is.

Scan update is Elizabeth is still refusing to go, and I will need to ask about the endocrinology for you.

As far as I am aware other family members are aware we are monitoring phone use for a period of time.

Phone calls as well as phone use will be monitored for the agreed period of time.   You have no right to do this under law.

Our new RC  at ash villa is still Dr Kumar but may change in the near future, I will advise when this happens.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

From: susan bevis
Sent: 07 June 2022 13:15
To: BLAKE, Zoe
Cc: CONNERY, Sarah
Subject: FW: Visit Tomorrow to Elizabeth

This was done at Cambian.  Her phone taken away, kept charging in the office continuously, given a time slot for when I was allowed to phone.  The outcome was the phone had to be handed back immediately to Elizabeth because it was found that legally Cambian were in breach of human rights and the law as is Ash Villa. The phone is Elizabeth’s phone and the contract is paid for by the family and therefore Ash Villa and the MDT are in breach of human rights law and I can forward you the letter from previous solicitors in this respect as it went straight to the CEO for court purposes.

Thanks for confirming that Dr Kumar is still the RC with overall responsibility for everything that goes on under Ash Villa.

Elizabeth would not be refusing appointments for the scan if her family were taking her and so I would like some Section 17 leave to take my daughter for this essential appointment. 

Endocrinology is also an essential appointment and referral to a hormone clinic was recommended at a previous tribunal.   We want to know what the abnormal findings on the scan were so therefore when is the next MRI appointment in an open scanner which we dont mind paying the difference for so that we can be present.

Please forward a copy of the capacity assessment done by GJ that prompted you to say Elizabeth had no capacity as well as a copy of the minutes of the manager’s hearing that I was invited to by way of text message from Elizabeth and that I had been requesting for months on end as my right as the NR but then now it would appear that everything has changed in this respect.

Thank you

Regards

Susan Bevis

Ash Villa

Sleaford

NG34 8QA

Working hours Monday to Friday 09.00-17.00 pm

From: Blake, Zoe
Sent: 07 June 2022 14:02
To: susan bevis
Subject: RE: Visit Tomorrow to Elizabeth

Hi Susan

I have spoken to the Doctor today and unfortunately he does not have any room in his diary to meet with you tomorrow.

The Doctor and myself will revisit this for you at the end of the week and allocate some time where possible.

I am not authorised to send paperwork you would need to go through the correct channels.

Please find attached the document you would need to fill in and send off to be able to gain access to the information.

I have spoken with the doctors regarding ****** Celebrations and this will not be permitted on this occasion Elizabeth’s S17 leave will remain the same  which is 2 x 30 minutes ground leave escorted by 2 members of staff.

Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

From: Blake, Zoe
Sent: 07 June 2022 11:47
To: susan bevis
Subject: RE: Visit Tomorrow to Elizabeth

Good morning Susan

It has been recently discussed in Elizabeth’s MDT That phone access be monitored for a period of time.

It has been reported that the phone works fine and Elizabeth has not mentioned it needs to be repaired.    There is a cracked screen which Elizabeth agreed for me to get repaired but because I used to visit on a Sunday no shops were open.

Elizabeth has her phone twice a day 1 hour in a morning and 1 hour in the evening, at these times Elizabeth is able to call and text who she wishes. Elizabeth is just lying in bed in the mornings and in fact according to one nurse has spent much of her time in her room isolated from everyone and refuses to join in.

The phone will not be permitted to leave the ward however her clothing will be ready for you to collect. 

I will speak to the RC and see if he has any room to see you tomorrow at 3pm however I cant commit to this as yet, I will feed back to you as soon as I can on this.

I will book your visit in for 15.00pm Wednesday.

For your information Elizabeth went to her breast screening appointment yesterday and it has been reported that No Lump has been found, Elizabeth was visibility pleased by this and commented how pleased you would be able this also.  

Kind regards

Zoe Blake

Carer Champion

Sent: Friday, June 17, 2022 7:04:38 PM
To: susanb
Subject: Evidence

The best interest assessor will need to give evidence if they are relying on this to justify their actions.  A best interests assessor is a legal role, not a medical one.  

Sent: Wednesday, June 15, 2022 9:26 am
To: susanb
Subject: Re: Costs

Until the question of capacity is settled this will continue to go around in circles.  I do not believe a proper capacity assessment has been carried out and that this is simply a ploy to keep control on the ward.  If they can maintain this the issue of consent is basically sidelined.

It is absolutely essential that this is determined one way or the other.  If best interests assessor has made a professional decision here all they have to do is provide you with a copy of that assessment.  Since doing that would settle the matter and they haven’t done so I can only assume that this process has not been carried out under the provisions of the MCA2005.  

As for threats of costs that is an ‘occupational hazard’ in litigation and is an obvious weapon to be waved about if you threaten to take them to court.  

It is very risky for Elizabeth to miss meals.  It will make her susceptible to infection and can be a strain on her heart and liver when she restarts eating.

Monocytes responsible for fighting off infectious pathogens retreat back into bone marrow if the person misses too many meals.  This is measurable even after one day.  Just like the lack of oxygen she suffers during sleep these effects will combine to make her ill, possibly seriously ill.  Monocytes protect against cancer and heart disease by stopping pathogens getting access to the heart.  

They should know that.  It will also affect the metabolism of the drugs as fasting shuts down P450 cytochromes.  Letting her go without food is neglect.

See attached paper:  

Skipping meals can trigger a negative effect on immune cells:

Fasting may be detrimental to fighting off infection, and could lead to an

increased risk of heart disease, according to a new study by the Icahn School of Medicine at Mount Sinai. The research, which focused on mouse models, is among the first to show that skipping meals triggers a response in the brain that negatively affects immune cells. The results that focus on breakfast were published in the February 23 issue of Immunity, and could lead to a better understanding of how chronic fasting may affect the body long term.

Researchers aimed to better understand how fasting -; from a relatively short fast of only a few hours to a more severe fast of 24 hours -; affects the immune system. They analyzed two groups of mice. One group ate breakfast right after waking up (breakfast is their largest meal of the day), and the other group had no breakfast. Researchers collected blood samples in both groups when mice woke up (baseline), then four hours later, and eight hours later.

When examining the blood work, researchers noticed a distinct difference in the fasting group. Specifically, the researchers saw a difference in the number of monocytes, which are white blood cells that are made in the bone marrow and travel through the body, where they play many critical roles, from fighting infections, to heart disease, to cancer.

Reviewed by Emily Henderson, B.Sc. Feb 23 2023

There is a growing awareness that fasting is healthy, and there is indeed abundant evidence for the benefits of fasting. Our study provides a word of caution as it suggests that there may also be a cost to fasting that carries a health risk. This is a mechanistic study delving into some of the fundamental biology relevant to fasting. The study shows that there is a conversation between the nervous and immune systems.”

Filip Swirski, PhD, Lead Author, Director of the Cardiovascular

Research Institute at Icahn Mount Sinai

Skipping meals can trigger a negative effect on immune cells

Saved from URL: https://www.news-medical.net/news/20230223/Skipping-meals-can-trigger-a-negative-effect-on-immune-cells.as

At baseline, all mice had the same amount of monocytes. But after four hours,monocytes in mice from the fasting group were dramatically affected.

Researchers found 90 percent of these cells disappeared from the bloodstream,and the number further declined at eight hours. Meanwhile monocytes in the non-fasting group were unaffected.

In fasting mice, researchers discovered the monocytes traveled back to the bone marrow to hibernate. Concurrently, production of new cells in the bone marrow diminished. The monocytes in the bone marrow-;which typically have a short lifespan-;significantly changed. They survived longer as a consequence of staying in the bone marrow, and aged differently than the monocytes that stayed in the blood.

The researchers continued to fast mice for up to 24 hours, and then reintroduced food. The cells hiding in the bone marrow surged back into the bloodstream within a few hours. This surge led to heightened level of inflammation. Instead of protecting against infection, these altered monocytes were more inflammatory, making the body less resistant to fighting infection.

This study is among the first to make the connection between the brain and these immune cells during fasting. Researchers found that specific regions in the brain controlled the monocyte response during fasting. This study demonstrated that fasting elicits a stress response in the brain-;that’s what makes people “hangry” (feeling hungry and angry) -;and this instantly triggers a large-scale migration of these white blood cells from the blood to the bone marrow, and then back to the bloodstream shortly after food is reintroduced.

Dr. Swirski emphasized that while there is also evidence of the metabolic

benefits of fasting, this new study is a useful advance in the full understanding of the body’s mechanisms.

“The study shows that, on the one hand, fasting reduces the number of circulating monocytes, which one might think is a good thing, as these cells are important components of inflammation. On the other hand, reintroduction of food creates a surge of monocytes flooding back to the blood, which can be problematic. Fasting, therefore regulates this pool in ways that are not always beneficial to the body’s capacity to respond to a challenge such as an infection,”

Skipping meals can trigger a negative effect on immune cells

Saved from URL: https://www.news-medical.net/news/20230223/Skipping-meals-can-trigger-a-negative-effect-on-immune-cells.as

explains Dr. Swirski. “Because these cells are so important to other diseases like heart disease or cancer, understanding how their function is controlled is critical.”

This study was funded by grants from the National Institutes of Health and the Cure Alzheimer”s Fund.

Source:

Mount Sinai Health System

Journal reference:

Janssen, H., et al. (2023) Monocytes re-enter the bone marrow during fasting and alter the host response to infection. Immunity. doi.org/10.1016/j.im

muni.2023.01.024.

Skipping meals can trigger a negative effect on immune cells

Saved from URL: https://www.news-medical.net/news/20230223/Skipping-meals-can-trigger-a-negative-effect-on-immune-cells.as

Castle Ward, Peter Hodgkinson Unit Lincoln County Hospital have not examined whether any of its ‘treatments’ have disrupted Elizabeth’s immune system.  There is close association with inflammatory cytokines such as interleukin-6 and worsening psychosis. I have asked for these tests to be done.

It is all very well saying that they are complying with the BNF dosing regimen but that is a waste of time where a patient is a poor or non-metaboliser or where inflammatory cytokines are interfering with the drug in getting to target.

It is more than possible that their defective interventions have disrupted these inflammatory markers and induced a worsening of the psychotic symptoms as a result.   They simply do not understand the interaction of the immune system with the CNS and how immune dysfunction can affect neurotransmitters such as dopamine.   They should have done immunological tests, brains scans and cytochrome tests to determine any immunological/inflammatory conditions that might affect the metabolism and therapeutic effect of any medication.  Where these issues are not taken into account psychosis can get worse with treatment, not better.

Professor Valeria Mondelli, Clinical Professor of Psychoneuroimmunology at King’s Institute of Psychiatry, Psychology and Neuroscience is the most influential neuroscientist working on immune response, inflammation and psychosis.

She has identified 20 cytokines (proteins) involved in inflammation inducing psychosis and that these can be triggered by acute trauma.  That is probably what happened to Elizabeth during serious past incidents in London and every time they mistreat her in hospital by restraint and forced medication it triggers the response again making her mental illness even worse.  She needs to be out of a DoLs restrictive/coercive environment if she has any chance at all of a recovery at all. 

It is abusive for male nurses to administer depot injections. Today she has had nothing to eat and there has been more than one occasion such as this. Yesterday I brought food in and I have tried to call the ward several times just now. Only once a week patients are allowed to have takeaways but I now want to order something because something is better that nothing and there are healthy alternatives.

It is important for Elizabeth to be tested for multi -drug resistance associated protein 1 (MRP1).   If transport proteins are not correctly expressed she could have serious adverse effects caused by inability to efflux drug substrates from brain tissue and this can lead to neurotovicity, another organic brain disorder.  This is the transport proten for Clopixol P-GTLYCOPROTEIN (p)-GP).

TESTS TO SEE IF C-REACTIVE PROTEIN (CRP) AND INTERLEUKIN – 6  (IL-6)  Are present

SEBACEOUS CYST

THIS IS WELL ASSOCIATED WITH LONG TERM USE OF NEUROLPTIC MEDICATIONS.  IT IS A POTENTIAL ENDOCRINE DISORDER LINKED TO INABILITY TO METABOLISE DRUGS  (Both endocrine tests and P450 liver enzyme tests) have proven this.  THE CYST IS NOT BENIGN.   THE CYST NEEDS REMOVING AND ELIZABETH NEEDS TO BE GIVEN ADVICE ON THIS UNDER THE INFORMED CONSENT ACT AND HER MOTHER SHOULD BE INCLUDED IN ASSISTING IE TAKING HER TO A NECESSARY APPOINTMENT.

RESTRICTIONS ON HER MOTHER VISITING AND BEING SUPERVISED 2-1 SHOULD BE LIFTED AND IN ANY CASE AS PER NHS GUIDELINES AN IMPACT ASSESSMENT HAS NEVER BEEN CARRIED OUT ON ELIZABETH OR HER MOTHER AND NO NOTIFICATION TO THE NEAREST RELATIVE

It is suspected that Elizabeth has a dysfunctional glymphatic system after years of neuroleptic medication.  If these tests have not been done then they need doing urgently.

27 March 2023

New study maps out links between psychosis and our immune system

In the largest study of its kind, research led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has identified some of the elements in our immune response that influence our risk for developing psychosis.

Published in Brain, Behaviour and Immunity, the study analysed blood samples from 325 people to assess the levels of 20 proteins which are known to be involved in our immune response.

Researchers found an association between the levels of certain proteins – cytokines – involved in inflammation and the risk of developing psychosis. Other proteins that are thought to affect the barrier between the blood and the brain were linked to whether those at risk later developed psychosis.

The research was part of the European Network of National Schizophrenia Networks Studying Gene-Environment Interactions (EU-GEI) Project and supported by the NIHR Maudsley Biomedical Research Centre.

This is the largest study of its kind to explore in depth how the patterns of the different proteins involved in our immune response might be connected to the risk of developing psychosis. Our analysis has highlighted some interesting relationships between individual proteins that are released by our immune system and the likelihood of whether someone at risk of psychosis will go on to develop the condition.Professor Valeria Mondelli, Clinical Professor of Psychoneuroimmunology at King’s IoPPN and lead author on the study

Detecting risk of psychosis early

Psychosis is when people lose contact with external reality, often causing considerable distress for the person and their family or carers. People with psychosis can, and do, recover and the likelihood of this happening increases the sooner treatment is started.

To enable early treatment, researchers and clinicians have developed methods to identify those who are more likely to develop psychosis and studies show that 1.7 per cent of the general population are at risk. However, around one fifth of those people at risk will develop psychosis which presents a key challenge in predicting whether someone will or will not go on to experience the symptoms of psychosis.

The identification of specific biological markers or signs in the blood that are linked to psychosis could help overcome this challenge. There has been increasing evidence that the immune system plays a role in psychotic disorders and the study aimed to assess whether levels of certain proteins and chemicals that are part of the immune response are different in those who at high clinical risk compared to the general population. Researchers also explored whether those who went on to develop psychosis had a distinct profile in their immune markers compared to those who remained at risk but did not experience symptoms.

Linking immune response to psychosis

Researchers assessed levels of 20 proteins involved in our immune response in the blood of 325 participants from nine different countries. At the beginning of the study 270 of these were assessed to be at high risk for developing psychosis and 56 were not. Participants were assessed over the next two years and during this time 50 of those people who were at risk went on to develop psychosis.

Analysis of blood samples showed that those at risk of psychosis had higher levels of two proteins or cytokines involved in inflammation compared to those not at risk. These cytokines are called interleukin (IL)-6 and IL-4. Within the at-risk group subsequent onset of psychosis was associated with higher levels of vascular endothelial growth factor (VEGF) and an increased ratio of IL-10 cytokine to IL-6 cytokine. VEGF is involved in regulating the porosity of the membrane between the blood system and our brain and this is the first time it has been identified as a possible indicator of whether people will move from risk of psychosis to development of the disorder.

AI prediction techniques

In order to explore the potential for using immune-related markers as a way to predict the onset of psychosis, researchers tested a machine learning approach on the data collected on all 20 immune system markers. The approach did not provide an accurate prediction of whether people at risk of psychosis would go on to develop the disorder but represents an innovative step forward in new techniques to inform our understanding of psychosis.

Professor Mondelli, theme lead for Mood Disorders and Psychosis at the NIHR Maudsley Biomedical Research Centre commented: “Although it would have been fantastic to have identified a way to predict whether people will develop psychosis based on markers in their immune response, it is not surprising that AI techniques are unable to do this using this data alone. The path to psychosis involves many other factors in both an individual’s psychology and biology as well as from society and it is likely that data from these aspects of people’s lives would also have to be incorporated into any machine learning approach to enable a prediction of whether they will develop the condition.”

The study ‘Serum immune markers and transition to psychosis in individuals at clinical high risk’ by Mondelli, V. et al. was published in Brain, Behaviour and Immunity.

For more information please contact Franca Davenport (Communications and Engagement Manager (part-time), NIHR Maudsley Biomedical Research Centre).

In this story

Professor Valeria Mondelli

Clinical Professor of Psychoneuroimmunology