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Monthly Archives: November 2023

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.

https://revelationsuk.com/2023/11/23/skipping-meals/

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.

brain graphic 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 8th of April and  10th 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.

brain graphic 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

I am going to send you my entire email just written to the Rt Hon Victoria Atkins (Health Secretary) MP about Lincolnshire Partnership Trust and Council – her own area. The Rt Hon Victoria Atkins has tried to help us by sending emails to and from the Trust to the likes of Sarah Connery CEO but unfortunately the only positive thing I have had so far is a meeting with the Director of Nursing of LPFT – newly appointed Sharon Harvey and Director of Nursing Martin Fahy ICB. Here is what has been promised:

A FRESH CAPACITY ASSESSMENT TOTALLY INDEPENDENT OF THE TRUST – AS WITNESSED – BY SHARON HARVEY

A CTR (COMMUNITY TREATMENT REVIEW) with independent Chair by Martin Fahy Director of Nursing ICB

I saw the above-named Directors of Nursing on the 2nd October in a private meeting witnessed by a friend. At the same time, Elizabeth was being rushed to A&E suffering from an ‘episode’ lasting hours and hours on end from 2.00 pm to 7.30 pm as an emergency case. That is a long time to be in such a state with massively high BP levels and low oxygen levels – a very dangerous condition that prompted LPFT to refer her to A&E. Her body felt cold and clammy. I was allowed onto the ward despite Covid by the team as I had hoped to visit Elizabeth before this important meeting. I witnessed everything that I had seen months ago, well known to Ash Villa where she had countless episodes prior to Castle Ward and Ash Villa is where she had the accident that appears to have been covered up. Noone informed the family like they should have done under Sch 20 HSCA Reg 14. I have only just found out about this accident as Elizabeth has told me. Elizabeth not only shares information with me but other family members so it is pointless banning me from contact isn’t it but this is what Castle Ward tried to do altogether but now impose highly restricted supervised visits in breach of human rights.

Anyway, here is that email which exposes the area where Health Secretary Victoria Atkins is responsible for her constituents, me being one of them. To be fair, she has only just been appointed as Health Secretary but naturally I as a mother am not going to stay silent about the abuse my daughter is suffering and her family. The fact is she is said to have ‘no capacity’ yet was capable of making numerous phone calls today so she told me to solicitors on human rights, solicitors who previously represented her in her failed tribunal where she was too unwell to attend and also to capacity assessors to endeavour to appoint privately in order to overturn several flawed capacity assessments by Dr Adaeze Bradshaw, Dr Tahir Suleman and AMHP Kirsty Findlay, evidence supported by a best interest qualified and legal representative (Cilex qualified), KB. Elizabeth has herself contacted a firm of capacity assessors but Ms Sharon Harvey of LPFT offered to arrange for a completely independent assessment and therefore she needs to take Elizbeth’s instructions or else and ensure that the assessors of Elizabeth’s choice are allowed on the ward especially in light of visiting restrictions against me. I am very proud that Elizabeth has tried to help herself by making such phone calls, inspired by the influence of other patients who have said she must speak up for herself. Too right! I can do nothing for her right now except come and see her once a week for 2 hours of restricted contact.

I am glad to read the RC cannot pinpoint anything against Elizabeth in terms of risk to self/others from certain papers. In other words there is no risk to self or others but a hospital is far more risky than home when the flooring is hard and there has already been an accident where she hit her head following RT.

This is of public interest as it is public funds that are providing this so called care and treatment involving frequent and practically daily injections over and above what is “treatment” recommended under MHA for a condition now in grave doubt. Elizabeth and I both wish to go completely public for the sake of so many others and would welcome press attention:

Here is my email to the Rt Hon Victoria Atkins who Elizabeth advised she contacted today:

Dear Rt Hon Victoria Atkins

As you know we have suffered a catalogue of abuse since moving to Lincolnshire on 15 September 2021 when all we tried to do was provide the right environment and living accommodation and bring Elizabeth closer to her family.

We have been accused of psychological abuse and taking away of power of Attorney but this went in our favour.

I was stripped of my title of NR in County Court for not being suitable. 

I wish to congratulate you on your appointment as Health Secretary and want you to know how bad things are in your own area for vulnerable people with disabilities such as LD, autism and those yet to be properly diagnosed who are being denied pathological tests stuck under MH acute wards, who have something entirely different wrong with them such as my daughter as proven by scans below. I sincerely hope you can help us stop Elizabeth being sent far away.  I am taking out a full human rights case right now as my daughter’s human rights are being abused.   Elizabeth had all her neurology appointments cancelled as being ‘unnecessary’ the moment we arrived in this area. She was refused the research of Dr Shahpasandy into the Limbic system and scans going back to 2015 “normal” were being relied upon by various doctors.   Elizabeth has been treated just like a restricted prisoner practically all along and I am currently subject to 2-1 visiting restrictions – total breach of human rights.   I have also been denied visits.   Today I have had countless calls from my daughter keen to see me tomorrow.   She has told me on her own accord thanks to advice from another patient about speaking up she has phoned human rights solicitors, she has contacted your office and more than one firm of solicitors and even tried to get a fresh capacity assessment done herself.   I am not allowed to see my daughter apart from 2-1 visiting rights and besides Elizabeth will not do as I say so how on earth can I be portrayed as a bad influence?  

She is on a never-ending section and wishes to come home but various other doctors under LPFT  namely Dr Adaeze Bradshaw, Dr Tahir Suleman, AMHP Kirsty Findlay all did reports pointing to “no capacity” that are completely flawed that are being relied upon in order that a team of so many can decide what THEY think is best interest.

So Elizabeth has had the following doctors:

Dr Ismail – Charlesworth Ward who was talking about Lynsey needing nursing care in the first instance.
Dr Shahpasandy – refused his own research into the Limbic System – treated Lynsey as a restricted prisoner
Dr Ismail again
Dr Kumar
Dr Islam
Dr Suleyman – carried out flawed capacity assessment and left shortly afterwards
Dr Greenall – gave a bit of leave then stopped leave following an ‘episode’
Dr Memon  Cygnet – a doctor who I truly respected because of his brilliant communication skills and caring attitude when Elizabeth had another episode on his ward at Cygnet and was taken to A&E.
Dr Mohammed – Ward 12 – again another episode where she was rapidly tranquilised
Dr Khokhar – Castle Ward who has had to allow fresh scan and neurologist referral but who has imposed enormous restrictions Elizabeth calls “punishment”.

5 Institutions since moving to LPFT:
Charlesworth Ward PHU – a dormitory ward which could not be worse re sensory issues
Ash Villa Sleaford – held a virtual prisoner for months on end under Dr Shahpasandy and where the “fits” began and accident occurred
Cygnet Durham
Ward 12 – another dormitory ward
Castle Ward – the only ward where they have better facilities however it is incredibly noisy with alarms going off all the time.

Proposed care home Ashton House – looks like in West Sussex hundreds of miles away from home and family but it has been mentioned about East Yorkshire with regard to her moving to. So the question is why not Lincolnshire or if the plan is to keep her away from me why not Norfolk where other family members live?

All this is going on behind our backs right now yet Elizabeth who is said not to have any capacity has given me all this information, shared the most recent correspondence and also shared her Neurologist appointment letter with me and her appointment is on 3 January 2024.  I reckon they are trying to send her away before the Neurologist appointment far away from home and family because of what this could reveal especially now there are two sets of scans and “normal” means nothing because these words do not incorporate what has been identified by certain other experts who have the scans. All these years l suspect there has been historic injury in fact this is not a figment of my imagination because it actually says so on one of the images. Elizabeth does not want to go away to a care home so far away from home and family. She apparently said to the assessor yesterday from Ashton House “go away please”.

I have just spoken to Elizabeth who says she has tried to ring yourself just now and she has also tried to ring several solicitors.

The only treatment she is getting is constant injections right now, a Parkinsons drug is forcibly given yet not really part of her treatment as well as RT on nearly a daily basis – she said the injections hurt her and have been given by male nurses. This is absolute abuse- no psychological input whatsoever. It is apalling since Elizabeth is an abuse victim herself.  Having said that she has engaged with the OTs who she likes.  It is therefore very disturbing that Dr Khokhar has mistakenly said that Elizabeth is not engaging with activities when she is, as she has told the family she likes cooking and art. On a Saturday this is the only day Elizabeth can order a takeaway but some of the time she misses meals because she claims to feel constantly cold and stays in bed trying to keep warm and away from the never ending noise which is disturbing to her.

Elizabeth apparently had a bad accident whilst at Ash Villa which we have only just found out about. Her account of this was she was coming out of the bathroom in the seclusion room when she felt dizzy and fell hitting her head on the floor. No doubt she had been rapidly tranquilised, a frequent occurrence under Ash Villa that other patients felt necessary to report and they said they were doing the safeguarding. Even before moving to Lincolnshire her discharge note clearly stated “abnormal findings on a scan”  yet a wall of silence when I have tried to find out what this implied. Various doctors including Dr Greenall, Dr Afolabi and the vast majority except for Dr Memons have said a fresh scan and Neurologist appointment was not necessary but only now after so many episodes it has been deemed necessary. Totally negligent of any professional to be dismissive of underlying conditions or try to ignore possibilities of such especially when it clearly states on the discharge note “abnormal findings”.   Back in Enfield she was transferred from Chase Farm Hospital to Edgware because she was constantly hit around the head by another patient so a member of staff told me. I doubt she was sent for an MRI scan as a result.   There would appear to be injury on the private scans I paid for which are with another team of professionals right now who happen to be researching inflammation of the brain, lesions and also Alzheimers.  The scans have also been forwarded to various neurological experts.   Elizabeth has advised that a further set of scans were done on 10 November whilst under Castle Ward, again said to be normal but cannot possibly be normal when they would show exactly the same as the private scans also done recent that reveal a possible cavernoma, lesions and inflammation of the brain. Anyway, since there are so many episodes upon moving to Lincolnshire something is clearly wrong and all this time up until now nothing has been done about it.  Elizabeth has an appointment to see Dr C Solinas Consultant Neurologist on 3 January 2024 and it is very disturbing that right now they are trying to move her far away from home and family which should not be before this very important appointment.   There are wider implications here of my daughter being deprived of pathological tests, she has countless ‘episodes’ where her life is put at risk lasting for hours and hours and ending up in A&E so the pathological tests are of great importance.

I am also concerned that reading certain papers attached it states “low blood oxygen levels” and this can be fatal and the cause of it could be the overdrugging and frequent rapid tranquilisations without proper monitoring throughout the night.  During one ‘episode’ never experienced before we moved here BP soared enormously high. This combined with low blood oxygen levels can be fatal.  The episode on 2nd October lasted for hours and hours from 2.00 pm until 7.30 pm.   THERE IS SOMETHING ELSE WRONG WITH MY DAUGHTER AND THIS IS MENTIONED WAY BACK IN THE FILES and none of the psychiatrists involved know what it is as this is what is recorded. Therefore it is an MDT decision for the current referral to Dr Solinas. I should not be desperately trying to fight for proper tests all this length of time and neither should my daughter on her own accord be trying to ring numbers to get representation as she does not wish to be sent far away from home and family. 

You are Health Secretary and I am just a mother but I can assure you that I will do everything I can to publicise and bring to the attention of everyone worldwide the abuse going on – abuse of power and process by public authorities such as Lincolnshire Partnership Trust and Lincolnshire County Council – not forgetting Enfield – former area BEHMHT and Enfield Council and their legal dept.  Unfortunately, I am in touch with so many other heart breaking cases nationwide. I hope that you can do something about this. Martha’s Rule brings a great deal of hope.

Elizabeth today said something remarkable “God is stronger than them”.  It should not be a case of them and us should it, as all we wanted to do was work together with the professionals.   All over this country thousands of disabled vulnerable people are being held for years and years on end in acute ward setting and taken far away from their families and placed into care home settings where many lose their lives and are abused.  I can most certainly provide you with many other cases I am in touch with.  Imagine being a 90 year old lady fighting for her disabled son in desperation and feeling suicidal.  I am disgusted with this Country that this can go on but to be fair to you you are newly appointed and have tried to help us.  Now you have more power and more authority to help many others similarly suffering right now nationwide.    

I am copying in another mother/carer who together with me (as we are supporting one another right now) would very much like to meet with you personally whether it be in the local area that applies to both of us or in London.  Please supply me with a date when we can visit you personally preferably in the New Year.

I am worried Elizabeth’s appointment to see a Dr C Solinas Consultant Neurologist at Lincolnshire United Hospitals Partnership Trust (separate trust from Lincolnshire Partnership Trust which is MH) will be cancelled.  This is on 3 January 2024.  Now they are talking about moving her.   I am worried that she will miss out on her appointments when there is clearly underlying causes for the constant fits she is suffering that is of a neurological nature not psychiatric yet she is lumped together with others.  I am curious at how many others likewise are affected and never getting better because they are not being pathologically assessed in terms of underlying physical health problems which may present with symptoms mistaken as being mental illness.

I am also trying to get hold of the Rapid Tranquilisation log as every time Elizabeth has an “episode” which looks like a fit this treatment and this can affect blood oxygen levels.  

Whilst I have only 2-1 supervised visits we see this as punishment. My daughter’s life is at risk as per the attached which mentions blood oxygen levels to be low.  There is a big meeting planned about moving Elizabeth into care coming up soon but I am not sure whether this is a proper CTR or whether family will be included as they were previously in Enfield. Elizabeth is not being properly supported for this ‘CTR’ and has been given a piece of paper to write on her comments. She has written, witnessed by a friend “I want to eventually come home to live with my mum in the annex through court of protection.  I miss my mum greatly and want to go home to her.  My blog below goes right back to Enfield and features all of the institutions involved.  Enfield are responsible for paying for S117 aftercare.

No way should anything be covered up that is under public expense and disgusting abuse of a vulnerable person’s rights and this needs exposing.  All courts should be open and transparent. Elizabeth wishes to waive anonymity because all along she has capacity to decide on important matters such as where she wants to live.  I am training to be a BI assessor so I also know what I am talking about here.

This is your local area so I do sincerely hope you can do something about this abuse.  I intend to go to any lengths to change such a rotten abusive system and am happy to feature the many other cases on my website who are affected until there is a law in place to prevent such abuse from happening.  Martha’s law is a good start and also Helen Whately and Will Quince are working on a paper to ensure parents and carers are allowed to visit care homes and hospitals in a dignified manner. There are many people still restricted/ banned from visiting their relatives in care homes and hospitals.

I trust you will give this your due consideration as I am far from daunted in taking on what appears to be a completely corrupt system the UK currently has in place and will go to any lengths necessary as all I want is for my daughter to be treated in an honest and fair manner.  

Kind regards

Susan Bevis  POA

MRI SCANS – CAN A NEUROLOGIST PLEASE CONFIRM PLUS CARE QUALITY COMMISSION COMPLAINT

Since moving to Lincolnshire Partnership Trust Elizabeth’s physical health has not been taken seriously by any of 10 doctors apart from Dr Memons from Cygnet Durham who has not had the usual …

revelationsuk.com

GO AWAY PLEASE I DO NOT WANT TO GO TO ASHTON HOUSE WRITTEN BY ELIZABETH “IT’S NOT SET IN STONE”
Yesterday I had a lady come to see me at Castle Ward (Peter Hodgkinson Centre) Lincoln County Hospital. She said she was assessing me for Ashton House. I got my Mum to look up Ashton House and it a…
revelationsuk.com

LETTER FROM MENTAL HEALTH ACT TEAM and LEGAL TEAM

NHS LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST &nb…

revelationsuk.com

BULLYING/ABUSE OF POWER AND PROCESS BY LINCOLNSHIRE PARTNERSHIP TRUST – AND THE ROLE OF THE RC

Mental Health Act Administration Office &…

revelationsuk.com

REGULATION 20 – The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014

Regulation 20 requires the healthcare provider (in this case LPFT) to notify patients and their families of any unintended consequences caused by a regulated activity such as rapid tranquilisation.…

revelationsuk.com

Yesterday I had a lady come to see me at Castle Ward (Peter Hodgkinson Centre) Lincoln County Hospital.

She said she was assessing me for Ashton House. I got my Mum to look up Ashton House and it appears to be a care home in West Sussex. I told this lady (dont know her name but trying to find out) that I did not want to go to Ashton House and I wanted to come home. She said “it is not set in concrete”.

I feel I am being abused at Castle Ward. I am very unhappy here. It is so noisy. Another patient has told me I need to speak up for myself.

I find it difficult to speak up as they have put me on so much drugs. I find it easier to write and I have asked my Mum to put my words on her blog. My Mum is only allowed to visit with two members of staff present. I feel my human rights are being abused. Today I have tried to appoint a human rights lawyer. I have also tried to appoint another lawyer for the court of protection. My mum has explained about the capacity assessments to me and why I need a fresh one. I understand this has been promised by Sharon Harvey.

I have just phoned a human rights lawyer and was told “all sorted the solicitor will ring me back”.

I miss you lots. I am looking forward to my next visit.

I can see what is happening they have control or they think they do. 14.59 15.11.2023 I have missed you greatly today – they say it wont be long before come bk home 00:23 15.11.2023.

I have agreed for all the scans to be shared. 15:12 13.11.23.

ASHTON HOUSE WRITTEN BY SUSAN BEVIS

Crawley Nursing Homes, Dementia Nursing Home Haywards Heath, Nursing Homes in Crawley West Sussex, Brighton & Burgess Hill Nursing Home – Nursing Home Haywards Heath – Ashton House Residential and Nursing Home (ashtonhousehaywardsheath.co.uk)

This is the only Ashton House information I could find on line and it is a very long distance from home and family as if they could not find anywhere nearer since the rest of family live in Norfolk! So if they, the MDT are intent on keeping my daughter away from me as said by Dr W Khokhar RC “you are a bad influence” why not think of others in the family. Why punish us all? Talk was of East Yorkshire originally but now this place is in W Sussex and all the time Elizabeth has capacity. How dishonest is that for LPft rated Good by the CQC?

Only got to hear the shocking news this morning from Elizabeth who apparently told the lady trying to carry out an assessment to “go away”. Elizabeth has asked me to share the above which I am doing. I could only find one Ashton House which is situated hundreds of miles away and it is a Care Home in West Sussex. Elizabeth is trying to find out the name of the lady concerned who visited her yesterday who she said smiled at her but Elizabeth clearly does not want to be sent so far away from home. Rest of family are in Norfolk. The way this is being done is highly deceitful of Lincolnshire Partnership Trust who know full well she has a Neurologist appointment on the 3rd January with Dr C Solinas and they appear to be trying to move her far away from home and family against her wishes.

Elizabeth has made several phone calls herself to try and book a fresh capacity assessment because three flawed in-house assessments have been carried out by the following:

Dr Adaeze Bradshaw

Dr Tahir Suleman

Kirsty Findlay AMHP

All in-house and all severely flawed.

Under this appalling Trust rife with bullying where human rights are non existent, where no regard is given to carers or vulnerable patients, they are clearly desperate to get Elizabeth far away from home and family regardless of human rights and are restricting visits 2-1 against human rights Art 8 HRA.

Elizabeth was given a pen and notepaper to write on because she finds it difficult sometimes to talk to people especially in meetings. She has an advocate from Voiceability but not sure how often she sees this advocate and not sure she is always included in meetings. She was present at the ward round last Wednesday though and I was actually let into the Teams meeting on this occasion but have been cut out of several left waiting endlessly but they are no doubt stepping up sending Elizabeth to either hospital or care home outside of the area as in this area there is nothing nearby according to Hannah Kajue which is nonsense and besides this other area who provided nothing by way of support and care in the community themselves are not the decision makers here now.

The two Directors of Nursing are Sharon Harvey LPFT newly appointed

and

Martin Fahy Director of Nursing Lincolnshire ICB.

Following a culmination of endless complaints never properly answered and some responses of the most horrific threatening nature finally an appointment was arranged by Pals to see Sharon Harvey and Martin Fahy on the 2 October. The meeting was witnessed with a friend present.

It was offered – FRESH CAPACITY ASSESSMENT INDEPENDENTLY DONE BY SHARON HARVEY

It was offered – CTR INDEPENDENTLY CHAIRED previously refused BY MARTIN FAHY

So far Elizabeth has not been supported at all for the CTR. She has not idea when this will take place but a meeting is planned and I feel the CQC need to be present for this meeting as I can see my daughter and noone in her family is being treated fairly at all.

All we have seen so far since moving to Lincolnshire is abuse of power and process by council and NHS Trust.

It is, and has been for some time clear that ‘capacity’ is being used as a firewall to prevent Elizabeth exercising her rights and to exclude me from decision making processes.

This is a textbook ‘Catch 22’ position and is entirely disingenuous. Elizabeth does not lack capacity to decide who is acting in her best interests.  Her attenuated capacity does not go that far at all.

The LPFT and LCC have abused the MCA2005 simply to get their own way.  They are so obsessed with keeping you out of the picture that they are quite prepared to put Elizabeth’s welfare in jeopardy.

Capacity need to be continually assessed as it is time and situation specific.  I dare bet there is no record of any ongoing capacity assessment and they are abusing the process simply to get their own way.

This is a major violation of Elizabeth’s and your human rights and not simply a minor violation of the MCA2005 (it is of course that as well)     

I agree fully that this needs publicity, especially with regard to the HRA issues.  You will of course need Elizabeth’s consent for that. which I do most certainly have. No-one without a bit of capacity could pick up the phone and call a solicitor for help and then try to get human rights lawyers involved.

How many times does my daughter have to say “I WANT TO GO HOME” “I MISS MY CAT” LINCOLNSHIRE PARTNERSHIP TRUST AND COUNCIL YOU ARE A DISGRACE AND WE HAVE HAD NOTHING BUT BULLYING SINCE WE ARRIVED. You should not be entitled to a Good Rating by CQC until you take on board human rights of vulnerable people and you should all undergo the Oliver McGowan Training SHAME ON YOU LINCOLNSHIRE PARTNERSHIP TRUST AND COUNCIL WHO BACKED YOU, ESPECIALLY THE AMHP DEPARTMENT.

Last of all I want all CCTV footage and written evidence of my alleged threatening behaviour when it is you yourselves responsible for that in my opinion and I want all allegations taken out against me unless you can provide me with proof which I want to share with all my readers.

It is disgraceful how doctors torment a patient refusing to listen and labelling her with a stigmatic label refusing to carry out the necessary pathological investigations, depriving her of the support she needs and family contact. It is utterly inhumane to fail to emphasise with a patient and total abrogation of medical ethics. To insist on isolating her from anyone who can offer her real support is an appalling and egregious abuse of their power. By transferring her far away from home and family they clearly do not want her to develop long term friendships because of their insistence on providing her with personal support.

They are not even honest enough to give the full reasons to your face except that “you are a bad influence“. The two doctors who are very much involved are Dr Toby Greenall and Dr Khokhar RC who appears to be registered with Leicestership Partnership Trust but has two email addresses.

The other doctors involved have carried out flawed capacity assessments and the legal department backing them all the way yet the person concerned a Kyla Bailey Cilex Qualified is a Best Interest Assessor herself and would have known full well that capacity assessments were not fit for purpose and completely and utterly flawed.

Since moving to Lincolnshire Partnership Trust Elizabeth’s physical health has not been taken seriously by any of 10 doctors apart from Dr Memons from Cygnet Durham who has not had the usual arrogant dismissive response towards me as a mother.

I am not alone in desperately trying to get to the bottom of the truth when it is difficult to have faith in the medical profession who have gone to lengths to cover up underlying causes and Elizabeth is suffering life threatening “episodes” where her BP is sky high and her blood oxygen levels very low.

When you have scans done privately it is very disturbing when professionals such as Radiologists and psychiatrists pass these off as being “normal”. I now want everyone to know that just because they say “normal” does not mean normal at all. I am bitterly disappointed and feel let down that some doctors do not look into things properly. There have been ten doctors and five institutions under Lincolnshire Partnership Trust in a period of two years.

It is only now after countless “episodes” lasting hours on end have they referred Elizabeth to a Consultant Neurologist, a specialist in his field and thank God this is with another Trust though under Lincolnshire.

When scans from Barnet Enfield and Haringey MH Trust come back as “abnormal findings on a scan” as a mother and carer I have gone out of my way to ask what that has meant. It does say in the files that going way back to around 2008 “Anterior Region Medial Temporal Compromise“. I contacted Headway about this. The former MH nurse of Headway said “well done Ms Bevis“. This is not a mental illness.

The reason I am posting this for all my readers to hear is because I am concerned that there may be other people under the MH all over the County who are being denied proper pathological tests when they may have underlying physical health problems or injury that is being completely ignored and I do not think this is right at all. With Martha’s Rule coming up this gives hope to people like myself but it is a completely nightmare getting a second opinion on a medical condition when you are misfortunate to have a relative under the MH stuck on a never-ending section but why should such people be deprived of the correct diagnosis and treatment? It surely is imperative they get the right treatment for the underlying correct physical health diagnosis as all schizophrenia is, is a catch all label and physical health conditions or injuries are not pathologically investigated leading to incorrect diagnosis and treatment for many years on end.

I have had to pay privately for the scans when given a small amount of leave whilst under Ash Villa but they have revealed a great deal.

I am prepared also to pay for a private neurologist report and by posting this publicly I am hoping that someone can help me urgently in case Elizabeth gets moved on the spur of the moment as has been done before.

Whilst finally after all this length of time Lincolnshire Partnership Trust have referred Elizabeth to a Consultant Neurologist her appointment is not until 3rd January 2024. Now all of a sudden Lincolnshire Partnership Trust are talking of moving Elizabeth far away from her family to East Yorkshire. She does not want to go however I am worried that the Neurologist appointment with Lincolnshire United Hospitals Trust will be cancelled and then once trapped in another prison like setting (talk is of yet another hospital) or even a care home so when will there be the opportunity for Elizabeth to see the Consultant Neurologist. I have every faith in the Consultant Neurologist who is called Dr C Solinas but because everything has been covered up by two Trusts which include BEHMHT it is very hard to have faith in the majority of all the doctors involved under the MH who have flatly refused a scan as being unnecessary and here below is a prime example of a doctor who has done research into the Limbic system that everyone should be aware of.

Do you agree that ‘upregulation’ and ‘downregulation’ of dopamine might affect presentation of psychotic symptoms?”  

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.  I am working on a paper at this very moment on psychophysiological causes of anxiety and depression.  

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

IMG-0003-00001jpeg. (their reference Im: 7/24) shows the curious straight line going from the right temple radiating backwards at about 60 degrees to the lateral line of the skull. On the opposite side you will see a dark area corresponding to just behind the left ear.  

On IMG-0004-00001jpeg. (their reference Im: 11/24) there is another curious dark line behind the right eye.  You need to ask what they think these images are showing. Are they potential lesions? 

On IMG-0005-00001jpeg. (their reference Im: 26/96) the scan refers to >55 years old trauma.  What are they referring to here?

These images should be visible on your computer software without the Dicom download since jpeg. is a standard picture file format”

From: MHA Enquiries <MHAEnquiries@cqc.org.uk>
Sent: 16 November 2023 11:25

To: susanb255@outlook.com <susanb255@outlook.com>
Subject: CQC MHA Complaint Ref: ENQ1-17716124293

Dear Ms Bevis

We are writing to you from the Mental Health Act complaints team at the Care Quality Commission (CQC).

We have now received a copy of the letter summarising the outcome of the investigation into your complaints. We believe that a copy of this letter dated 14 November 2023 and signed by Dr Toby Greenall the Consultant Psychiatrist at Peter Hodgkinson Centre has already been sent to you, but please let us know if this is not so.

The Mental Health Act grants the CQC a discretionary power to investigate complaints where they are about the use of the powers and duties in the Act. If you are not satisfied with the response provided to you by the service, you could request that the CQC consider reviewing your unresolved concerns.

We do sometimes receive complaints about matters that we are not able to investigate because they are not within these powers. The CQC complaints process cannot make any recommendation about matters that can only be decided by a court of law. For example, we cannot rule on whether a detention is lawful, nor would we be able to provide any clinical opinion re diagnosis.

Before we could decide if there is a role for us, we would need a clear statement from you outlining what you are unhappy with in the provider response, any outstanding issues and your desired outcome.

Alternatively, you can contact the Parliamentary and Health Service Ombudsman Office (PHSO) within the next twelve months, saying why you are not satisfied. Their address is: –

The Parliamentary and Health Service Ombudsman for England

Citygate

Mosley Street

Manchester

M2 3HQ

www.ombudsman.org.uk/making-complaint

Telephone: 0345 015 4033

The PHSO can consider whether to investigate complaints that the NHS (and NHS funded care) in England have failed to act properly or fairly or provided a poor service. If the Ombudsman feels that it is more appropriate for the CQC to consider the outstanding concerns, they may refer you to our organisation.

The PHSO is the final arbiter in any complaint matter and therefore the CQC cannot consider any request for investigation once the Ombudsman has either completed or declined an investigation into your complaints.

Could I please request that you use the above reference number on any correspondence in relation to this case. If we do not hear from you within 15 working days of the date of this letter, we will assume that you have received satisfactory answers to the issues you have raised through Local Resolution and your enquiry will be closed.

Yours sincerely

Mark

Mental Health Act Complaints Team

LPFT have also treated my daughter like a restricted prisoner under Dols and tried to sever contact by taking the phone away whilst at Ash Villa and right now on Castle Ward Elizabeth is subject to restricted visiting, no leave after 2 years – treated like a prisoner with no rights as though on dols to this day. Even in former shocking area of Enfield she was not treated like a restricted prisoner.

The doctors responsible for that non-compliant capacity examination also need asking why they did not consider the criteria form the MCA 2005.  Elizabeth is perfectly capable of making a decision as to who represents her in any litigation.  They have not come anywhere near the required standard of proof that she lacks capacity to the extent that she is incapable of determining who she wants as next friend.

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.   The bullying started the minute we moved. The first “best interest assessor” was Margaret Biddles followed by Andrew Morrans AMHP under the shocking department run by Heidi Merrikin – Manager.

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. I am sure I have requested these before but in case my correspondence has been lost I will certainly re-request these and I will post right here what response I get.

The doctors responsible for that non-compliant capacity examination also need asking why they did not consider the criteria form the MCA 2005.  Elizabeth is perfectly capable of making a decision as to who represents her in any litigation.  They have not come anywhere near the required standard of proof that she lacks capacity to the extent that she is incapable of determining who she wants as next friend. Too right! If Elizabeth is capable of contacting a solicitor herself and contacting a firm who do capacity assessments to request a fresh one done this rubbishes all the capacity assessments currently being used as an excuse to take away her autonomy and decide upon everything this team below see as “Best Interest which is a total disgrace in my opinion.

I am now training to be a Best Interest Assessor and so therefore can comment on what is right and wrong and all of these below apart from myself have got things very wrong. I have sought expert opinions and Elizabeth has contacted a firm of capacity assessors herself only recently so the team below should welcome the capacity assessors that are completely independent and appointed by Elizabeth onto the ward and I will let you know their response. I had no influence in this as Elizabeth chose to ring them herself so how comes I am being labelled as a bad influence when Elizabeth has a mind of her own. I am looking forward to hearing this explanation but I suspect just like the CCTV footage I am also waiting for nothing will appear in terms of explanation or evidence.

CASTLE WARD

To: KHOKHAR, Waqqas (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); TANIMOWO, Adekiite (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); KHOKHAR, Waqqas (LEICESTERSHIRE PARTNERSHIP NHS TRUST); CALDERONCARHUARICRA, Katteryne (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST); BARFORD-COWLEY, Amelia (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) Cc: AITKENHEAD, Angela (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barker, Robert (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barlow, Diane (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); BELLAMY, Charlotte (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); CAMSELL, Lucy (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FISHER, Bridgette (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Fitzpatrick, Brenda (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FLETCHER, Sue (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); GOSTELOW, Joby (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); JAQUES, Anthony (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Keogh, Sophie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); LAKE, James (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MARABADA, Ngonidzashe (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MOONS, Kashmir (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); POPOOLA, Tomilayo (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SCOTT, Emily (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SENDALL, Jackie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Skelton, Alice (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SUNDAR, Siddharth (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Tarling, Paul (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Waby, Lucieann (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); WALLACE, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); White, Jocelyne (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Woodlock, Emma (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);

CQC COMPLAINT IS ABOUT 2-1 VISITING RESTRICTIONS BASED UPON ME BEING A BAD INFLUENCE TO ELIZABETH WHEN ALL ALONG SHE HAS FULL CAPACITY TO DECIDE THINGS FOR HERSELF AND ALSO THE CORRUPT MANNER IN WHICH THE MCA AND MHA HAVE BEEN USURPED TO THE BEST INTEREST OF THE INSTITUTION AND PROFESSIONALS INSTEAD OF A VULNERABLE PATIENT’S WISHES.

First of all Elizabeth wishes everyone to know how she feels and what she wants:

Friday 10 November 2023 witnessed by friend:

“I want to eventually come home to live with my Mum in the annex through the CoP.

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

Elizabeth has her own little bungalow and there is no intention on my part to stop professionals visiting.

Care Coordinator from BEHMHTNHS Hannah Kajue commented “I do not think the annex is suitable” well for a start she has not even seen it and has NO SAY because all they will be doing is paying for S117 aftercare which they previously failed to prompting us to move. They have also failed consistently to provide anything fit for purpose which again I can well and truly prove. So it is all of the above but most of all Dr Khokhar who has the final word but tries to make out it is an MDT decision which is why I do not agree with MDTs because they allow certain professionals to hide and make out it is not them.

A CTR was promised by Martin FahyDirector of Nursing ICB with independent Chair like in Enfield where the Independent Chair said “the whole thing stinks”.

Director of Nursing Sharon Harvey from LPFT promised a fresh capacity assessment independent of LPFT but Elizabeth’s wishes should be taken into consideration and Elizabeth has chosen a firm to carry out this. It is only fair that LPFT should pay for it as nothing has been done correctly by two doctors and 1 AMHP. NO CAPACITY ASSESSMENTS SHOULD EVER BE CARRIED OUT IN-HOUSE AND AS LPFT HAVE MADE A HUGE MISTAKE BY APPOINTING IN-HOUSE ASSESSORS THIS NEEDS TO BE RECTIFIED.

I would also like the CQC to be invited to this multi-agency panel and the wonderful Access Charity who have previously given wonderful support until Elizabeth’s phone was taken away and to be fair to them made matters impossible for them to stay in contact however I have contacted them again today to let them know about the CTR.

The second diagnosis on the care plan is “Autism” but Dr Khokhar keeps saying “you have got schizophrenia, you have got schizophrenia” – this is extremely wrong and I want to clear up any confusion which is why I have turned to X to obtain expert opinions on the scan and Elizabeth has already given written consent for the scans to be shared with the wonderful Cavernoma Alliance and other experts.

It is extremely wearing to have to fight for another expert opinion and very quickly now I am so alarmed by LPFT wishing to send Elizabeth away to a 6th institution far away in East Yorkshire which could occur any time now that I therefore have had no option but to see if I can get as many opinions by Neurologists or even Neuro surgeons as possible and that is not because I do not trust Dr C Solinas but because I am afraid of the team’s next move and that Elizabeth could be whisked away so quickly that she misses out on any second opinions when it has already been highlighted the very valid concerns.

The CQC should look at how LPFT have behaved in the past also at former hospital Ash Villa:

From: Blake, Zoe LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST)
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. Oh yes she has as I have her text messages inviting me to prove and knew exactly what time it took place. Ash Villa were well aware of this too as I phoned on the day asking for the link.

 Kind regards

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA


Subject: Managers hearing

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.

Zoe Blake

Carer Champion

Ash Villa

Sleaford

NG34 8QA

From: susan bevis
Sent: 24 May 2022 09:39
To: Blake, Zoe (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST)
Cc: MHA (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.mha@nhs.net>
Subject: Managers hearing

Please can you give me a reason why Sophie Jackson and Sarah Twist of the MHA office have continually ignored me as nearest relative and today is the managers hearing which Elizabeth has invited me to.   So where is the link for this?   I have asked for a managers hearing many times only to be ignored by the MHA office.   What on earth is going on under that office as nearest relative I am surely entitled to call a managers hearing.

 I look forward to receiving the link

 Regards

Susan Bevis. 

So with the above examples you can see that I was cut out completely at the time of Dr Shahpasandy being RC.

Elizabeth’s medication was raised to enormous levels from just 300mg per fortnight to circa 400mg weekly with 10mg on top:

I can make no sense of that. A depot and pro re nata medication by tablet.

The drugs raised from 300mg per fortnight to 400mg weekly of clopixol PLUS 10mg clopixol tablet prn”

“After 24 months it should obvious that she is treatment refractive vis-a-vis Clopixol. They do not appear to have taken any notice of the fact that she is a poor metaboliser and that she may have inflammatory and endocrine disorders causing the drugs to be poorly or not metabolised.”

Elizabeth was judged to lack capacity however the common law test as determined in Masterman-Lister v Brutton & Co [2003] 1WLR 1511 was not applied.

Interrogative Suggestibility. Gudjonnson (1984)

1.            Baldwin (1993); Moston (1995), Pearse and Gudjonsson (1996), Shepherd (1993) 

“whether the party to the legal proceedings is capable of understanding, with the assistance of proper explanation from legal advisers and experts in other disciplines as the case may require, the issues on which his consent or decision is likely to be necessary in the course of those proceedings… the threshold for capacity to provide instructions is not high, and people severely affected by a mental disorder may still be able to provide instructions if you explain matters simply and clearly.”

A proper examination applying the proper methods and following the Code of Practice correctly, instead of manipulating it would show that Elizabeth has capacity, albeit impaired.  That is why they want to get you as far away from the treatment regimen as possible.

“Either you don’t understand the question, in which case you say so, and your “micro-expressions” confirm it, or you do, and you’re dodging. The latter is rather too clever for no capacity”.

So getting back to my complaint re CQC a thorough investigation needs to be carried out to look into breaches of code of conduct and policy to achieve results stated as being “best interest” – how on earth can it be best interest to send a vulnerable person far away from home and family making out she has no capacity. THIS IS TOTAL ABUSE OF POWER AND PROCESS AND COULD WELL AFFECT OTHERS. IN FACT BEFORE THE CQC SAYS THEY CANNOT INVESTIGATE INDIVIDUAL COMPLAINTS I KNOW OF OTHERS AFFECTED.

This is undoubtedly a matter for The Rt Hon Victoria Atkins to look into as it concerns Lincolnshire but also a much wider picture that affects the entire UK because there are many other parents fighting right now that I know of.

I am also aware of others whose relatives have been sent far away and there must be some sort of deal with Yorkshire?

A while back in Enfield I asked for Elizabeth to be considered for The Retreat in York or Amitola Community that offer an entirely different approach. However I moved to benefit Elizabeth to the right environment and do not see why she should be moved at all since there is a wonderful organisation called Shared Lives whose offices are in Sleaford. I have also seen an example of a parent asking the LA in Surrey I believe to provide the land where disable people can have their own community and parents can be involved unlike at Lincolnshire Partnership Trust. I would be happy to be involved with any project of this nature and know of others seeking similar solutions. Imagine what it must be like to be 90 and fighting to be near to your relative – a son who is in a wheelchair stuck on a MH ward – this is so sad and I know of other cases in this area too who could be actively involved alongside care workers and professionals working together and not having to challenge decisions of a MDT involving about 30 strangers and deciding on which institution next all of which are the wrong environment. But in this new area there is a wealth of land and farming communities where the correct provision can be made and money saved by this.

I also think that if there was Open Dialogue there would be no complaints from parents and carers such as myself who are on the receiving end of heartbreaking messages and phone calls from their relatives who would not be fighting if they were included rather than excluded in decision making.

I hope that the Rt Hon Victoria Atkins takes this on board as I am in touch with the most shocking cases throughout the UK and would like to see something done about it

I wish to share with you some of the emails I have today been writing in sheer desperation on behalf of my vulnerable daughter and I also wish to share with you her most recent comments and wishes which are being totally ignored by these people:

CASTLE WARD

To: KHOKHAR, Waqqas (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); TANIMOWO, Adekiite (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); KHOKHAR, Waqqas (LEICESTERSHIRE PARTNERSHIP NHS TRUST); CALDERONCARHUARICRA, Katteryne (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST); BARFORD-COWLEY, Amelia (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) Cc: AITKENHEAD, Angela (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barker, Robert (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barlow, Diane (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); BELLAMY, Charlotte (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); CAMSELL, Lucy (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FISHER, Bridgette (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Fitzpatrick, Brenda (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FLETCHER, Sue (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); GOSTELOW, Joby (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); JAQUES, Anthony (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Keogh, Sophie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); LAKE, James (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MARABADA, Ngonidzashe (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MOONS, Kashmir (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); POPOOLA, Tomilayo (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SCOTT, Emily (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SENDALL, Jackie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Skelton, Alice (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SUNDAR, Siddharth (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Tarling, Paul (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Waby, Lucieann (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); WALLACE, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); White, Jocelyne (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Woodlock, Emma (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);

These people above are what is known as the MDT (Multi-disciplinary Team) and personally I think there are far too many strangers amongst them to be involved in making decisions on behalf of a vulnerable person who should have been offered a CTR (Community Treatment Review) in the first place but this was denied to Elizabeth under LPFT. At least a CTR with independent Chair is a fairer option. What chance of fairness could ever be found from these people above under LPFT where there would appear to be a culture of bullying and as such who would even dare to challenge because when you do like I have you become a target of bullying and punishment dished out to you and that greatest punishment of all is to deprive you of contact with your vulnerable relative. Elizabeth used the word “punishment” today and said that she is being punished. She has made it clear to so many her wishes to come home, to see her cat and be closer to the family but instead this team of strangers have come up with East Yorks and yet another hospital. What a shambles.

On the other hand it could be because they want to take her away from this area because it has come to light there has been an accident at Ash Villa where Elizabeth hit her head on the floor in the seclusion room whilst on God knows how much drugs causing her to feel dizzy and lose her balance and to think they tried to cover it all up. What a disgrace.

Amongst the attendees above are my former shocking area of Enfield namely BEHMHTNHS equally as bad and still involved because of S117 aftercare.

During my visit to Castle Ward supervised 2-1 by HCAs and witnessed by a horrified friend Elizabeth wrote on a piece of paper her wishes:

“I want to 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.”

How very cruel that Elizabeth’s wishes are ignored by so many but I supposed if any of them dared to challenge it is more than their job is worth. I have even heard this said previously at a shocking good for nothing care home in Northampton by an RMN rated good by CQC yet she had no food at weekends in the files and I can share proof of that with all of you too.

I am still awaiting the CCTV footage of my alleged aggressive behaviour but will be waiting a very long time as there is nothing of course. It is just bullying because I turned up at Trust HQ and dared to complain about Dr Khokhar’s decision to cut all leave which was only granted on one occasion after months of imprisonment and total abuse of human rights. That leave was only 2 hours in grounds outside and extended to local area of Lincoln where Elizabeth thoroughly enjoyed going to a shopping centre called Carlton.

Since that one time things have gone from bad to worse. The entire family know about the accident now which happened some months ago and during the time at Ash Villa a bit more leave was granted up to 6 hours which worked well as I could take her out and show her the wildlife parks and a few nice things in the local area. During this time as a surprise I booked for Elizabeth an MRI scan which is what she always wanted and she did very well and lasted most of the duration for images to be taken in the mobile unit in Sleaford, Lincs.

I sent the scans to experts working on research of various kinds and a team of colleagues looked at the scans and identified several things in need of further investigation despite the scan amazingly stating “normal”. I wrote back to the organisation conducting the scan to the Radiologist and have not had any reply when I questioned why the scans said normal. They clearly are NOT normal. I was told at the time by various doctors/clinicians that no MRI was needed and that scans done in 2015 were normal. So I want all my readers to know that you cannot go by NORMAL! One of the images was even marked as “historic trauma” – the fact is they were all denying her the appointments with a neurologist and it is only because I made such a fuss about it and shows them the scans plus the comments made by an expert that finally LPFT have provided a scan and referral to a neurologist however today I contacted the care quality commission as it was also mentioned at Ward Round that a SOAD should be appointed. I wrote to the care quality commission and told them that Elizabeth should NOT be moved to another facility far away when she has been referred to a Consultant Neurologist and no way on earth should their SOAD look at the current treatment until Elizabeth has seen the Consultant Neurologist as how can a SOAD give any opinion if the diagnosis of schizophrenia is totally completely and utterly wrong.

Here is why Martha’s Rule is so very important and needed in that certain doctors wish to stick with out of date questionable diagnoses completely overlooking physical health concerns and file content that goes way back stating “Anterior Region Medial Temporal Compromise” plus the discharge note stating “abnormal findings on a scan”. Who can you trust except your instincts as a mother/relative in providing privately what was needed all along – an MRI scan which simply cannot be argued about as this is fact not assumptions.

Only one of ten doctors so far and from Cygnet in Durham really showed an interest in physical health and most probably would not have refused to do a scan.

So here are some of the emails I have written today which show what lengths I have had to go to to try and get the right care and treatment despite being cut out of everything and simply based on fact by way of the MRI scan I had done privately:

From: susan bevis
Sent: 15 November 2023 19:15
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net; victoria@victoriaatkins.org.uk victoria@victoriaatkins.org.uk; Christopher Reid Chris.Reid@parliament.uk; Enquiries Enquiries@cqc.org.uk;

Subject: Ward Round and Proposed Move to East Yorkshire
 
Dear All

I was talking with Elizabeth earlier today who did not feel very well unsurprisingly.  She has been treated like a restricted prisoner for c 2 years now, not allowed leave and now with the threat of being sent to East Yorkshire to yet another institution right now.  Great damage is being done to my daughter being held on various acute wards after all this time when she would be better off at home in the right environment.

Elizabeth now suffers from fits lasting hours and a hospital is completely unsafe as the floors are hard and she has hurt her back and she has hit her head badly on the floor of the seclusion room.  The annex is far more suitable and in a peaceful environment.   We should have been notified of this accident under Regulation 20 H&SCA Regulation 14 and that goes for every time she is rapidly tranquilised and now I have the CP11 Policy document which I intend to read thoroughly as I am concerned to read about blood oxygen levels being low and that is harmful to my daughter. 

Not only has no-one stopped to consider her feelings or that of any family members but they have treated Elizabeth like a vegetable on account of three flawed capacity assessments (not fit for purpose) but what of the CoP assessments?  they were done at the same time (2 of them) by assessors who came to Ash Villa and they did not state ‘no capacity’ did they!  Now that I myself am training to be a Best Interest Assessor I can see that nothing is being done correctly under LPFT. Elizabeth clearly has capacity and this matter needs to go before the Court of Protection in accordance with Elizabeth’s wishes.     I have a note witnessed by CM during her recent visit that states “I want to come home to live with my Mum in the annexe and through the Court of Protection.  I miss my Mum greatly and want to go home to her”.  Elizabeth has also tried to arrange a capacity assessment herself which I was prepared to pay for however Ms Sharon Harvey, Director of Nursing has offered to provide an independent capacity assessment and Mr Fahy a CTR independently chaired.

I do not like the way LPFT are ignoring my daughter’s wishes.   LPFT failed taking away the POA despite attempts trying to label myself and Mr Bevis as abusive yet again.  You succeeded in the closed- door county court to get rid of me behind my back and Elizabeth in the most deceitful manner backed by the council and their legal department.   That is another matter because clearly there is a culture of bullying under LPFT but yet 1 person retains overall control and yet sending Elizabeth away, so far away from home and family it is made out to be an MDT team decision.   In the middle of all of this is my vulnerable daughter who has phoned me today stating she feels she is being abused and she is correct.

The words “you have schizophrenia” are constantly expressed to her when Elizabeth (not me) states she is autistic and YES YOU CAN provide an assessment on that.  Nothing has been done properly there either. 

We came here to Lincolnshire to provide a more suitable home which is now built and completely independent.  We came here with the intention of working with professionals rather than against them but now LPFT have gone too far in ignoring my daughter’s wishes and I do not intend to stay silent about this or do nothing.

If LPFT are intent on severing contact between myself and my daughter then where is the consideration to the rest of the family.  If noone thinks I am suitable to be near my daughter what about the rest of the family who reside in Norfolk?   Why send her to East Yorks when she could either be nearer home so she can see her cat who she misses or else be moved to Norfolk?   You can be sure of this I intend to challenge this in the Highest Court which will reveal a lot about this area and how human rights, MCA and MHA law have been abused/ignored and the shocking way they treat vulnerable people and their families, breach of law re MCA and MHA also and breach of LPFT Policy.  

If Elizabeth was allowed to come home and said she did not like the annex and wanted to go elsewhere then that would be her decision.  There also should be a choice of three placements but because of the flawed capacity assessments this is being prevented as she has been stripped of her autonomy in the most dishonest and disturbing manner that warrants a full external investigation. 

Because of the private scans I have had cause to question the diagnosis with good clear evidence.  Scans said to be “normal”  however when questioned the radiologist remains silent with no response to my emails. 

The scans I had done are with various experts in the field of neurology right now and Elizabeth has written a letter of consent to share the opinions with the Cavernoma Alliance 

Since moving to this area LPFT have cancelled all pre-arranged neurologist appointments stating they are unnecessary which is very strange since the discharge note points to abnormal findings on a scan.     

IMG-0003-00001jpeg. (their reference Im: 7/24) shows the curious straight line going from the right temple radiating backwards at about 60 degrees to the lateral line of the skull. On the opposite side you will see a dark area corresponding to just behind the left ear.  

On IMG-0004-00001jpeg. (their reference Im: 11/24) there is another curious dark line behind the right eye.  You need to ask what they think these images are showing. Are they potential lesions? 

 On IMG-0005-00001jpeg. (their reference Im: 26/96) the scan refers to >55 years old trauma.  What are they referring to here?

Cavernomas

 Cavernomas are vascular malformations that have been associated with psychosis as well, especially in the setting of hemorrhagic transformation.

 That dark patch on Elizabeth’s temporal lobe looks suspiciously like one.

 
The article is about a young man presenting with psychosis and aggression.  He was found to have two cavernomas and you can see them on the scans in the article.

 It is possible that the reason why cavernomas are relatively rare is that the misdiagnosis of schizophrenia is masking the actual incidence in the population.  Since psychiatrists are so reluctant to allow patients to have brain scans many of these may be going undetected.

Clearly you need to get Elizabeth properly examined by a neurologist to determine if that indication on her brain is indeed a cavernoma or any other type of lesion. 

Neuroleptic medication will not treat these lesions and could potentially make them worse since it can cause inflammation.  

I took note that you mentioned that Elizabeth has a large sebaceous cyst on her head.  This is well associated with the long-term use of neuroleptic medications.

That also needs a medical appraisal done.  This is not simply a cosmetic ADR but indicates a potential endocrine disorder linked to her inability to metabolise drugs.

Incidentally this has also been known about for years.  Sebaceous cysts are NOT benign.  For one thing they may mask subdural lesions and inflammation making them difficult to define. I am told that nothing will be done about the sebaceous cyst and am really unhappy about the slapdash way they go about things refusing to look into pathological causes.

 It is rather odd that the scans are referred to as ‘normal’.  Decreases in grey matter are associated with neuroleptic use and certain areas of the brain are more affected than others. Most of the literature refers to severity of psychotic symptoms and dosage of neuroleptics to be directly associated with brain grey matter loss.  Since those with the most pronounced psychotic symptoms are given the highest doses of drugs and often dangerous concomitant medication it is not surprising that both contribute to brain atrophy.

The psychiatrists have classed Elizabeth as being towards the most severe degree of psychosis and have heavily and concomitantly prescribed neuroleptics to address this.  There is in fact little evidence that correlates dose with severity of psychotic symptoms.  Many patients with severe psychosis have responded to low doses of neuroleptics and the difference in response is more likely to be associated with the patients ability to metabolise than the dose volume.  It is here of course to be noted that the medics have been ignoring that for many years and have only just (reluctantly) accepted it. Very strange indeed as in Australia no sign of psychosis mentioned.

Elizabeth has of course now been subjected to many years of medication and structural changes in the brain resulting from it are likely to be irreversible along with the other long term ADRs associated with neuroleptic medication.  Her reduced capacity, which they put down to a low baseline IQ is far more likely caused by the long term structural changes to her brain, in particular grey matter atrophy.  Baseline IQ is in any case an anachronistic measure of a patients capacity and is highly inaccurate and riddled with confounding variables.  

 I have attached a set of scans that show where brain atrophy occurs as a result of neuroleptic medication (green spots) 

 There is also the mater of inflammatory complications. The inflammation can come and go and is likely to be pronounced in psychotic episodes.  They have not over the years seemed to consider this at all in spite of the large amount of studies published in the medical literature.  It is firmly established that inflammation can cause psychosis and that it can interfere with the uptake and metabolism of the drugs.  Personally I am astonished that this is in the main simply disregarded, just like to P450s were for decades.  So am I astonished.

I was fascinated with Dr Shahpesandy’s bizarre doublethink on inflammation.  On the one hand in his publications he fully acknowledges it it but when treating patients he completely disregards the findings of his own research.  

The orthodox medical obsession with so called chemical imbalances ‘treated’ with neuroleptics completely blocks out numerous pathophysiological contributing factors and possibly even causes of psychosis.  It is virtually medieval in its approach and shares more in common with cult beliefs than with science.  
 
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.   The reason I am being bullied by this team is because I have dared to request the real diagnosis now that I have significant proof by way of scans and it has been a nightmare to find that second opinion I need urgently before Elizabeth is moved on by Dr Khokhar and team which I hope will not be prior to Xmas depriving her of being with her family as well as depriving her once again of pathological tests and seeing her Consultant Neurologist who Elizabeth has shared with me is a Doctor C Solinas who holds clinics at Lincoln County Hospital. Elizabeth has also shared the date and time of the appointment which is on 3 January. I have just written to Dr Solinas to share the private scans and now there are more said to be normal when they cannot possibly be normal – it is as though the NHS is deliberately trying to cover up things like cavernomas and lesions as well as inflammation of the brain under the label of “normal” but luckily I am not so easily taken in and look well and truly beyond this as something must be wrong if Elizabeth is having fits that last for hours and hours on end and result in dangerously high blood pressure and low blood oxygen levels that could be fatal.

I wish to congratulate Victoria Atkins on her appointment as Health Secretary and am copying her in to this email.  I hope this example can be studied in terms of improving a system not fit for purpose and devoid of human rights.  

I do not know when you are going to send my daughter away yet again to another facility where it is noisy and hope it is not before Xmas as she wants to see her family and nothing is being mentioned about that.   She is suffering the effects of headaches, pain to her eyes and dizziness which led to an accident at Ash Villa.  She suffers anxiousness because of the uncertainty of her life which has been turned upside down as ours has.  She is subject to frequent rapid tranquilisation and I would question with the CQC to check the RT log and whether procedures are carried out correctly.

I have now proven that there is something else wrong with my daughter of a physical nature that needs further investigation but what is so bad are the lengths I have had to go to in respect of even getting her a referral to a Consultant Neurologist because I am not against treatment of the right kind but can see my daughter is suffering right now on a massive dose of drugs being treated for schizophrenia when it is likely she has a cavernoma and lesions plus inflammation of the brain.  She has also been denied endocrine test and immunologist tests.   She has sensory issues and is held in a most noisy acute facility and is being injected on a frequent practically daily basis despite the fact that MRI scans point to certain images being suspect of cavernoma, lesions and past trauma.

Last of all Elizabeth should NOT be sent anywhere until she has seen the Consultant Neurologist Dr C Solinas and it is not a case of the SOAD just checking on her medicine treatment as how can they do so until she has seen Consultant Neurologist Dr Solinas on the 3rd January.  Elizabeth has shared her appointment letter so I know all about it.

I would like confirmation from someone that my daughter will not be sent far away before Xmas and prior to her Neurology appointment with Dr Solinas against her wishes.

Yours sincerely

Susan Bevis   

I wish to share with you some of my concerns and why I have been copying in the CQC and why everyone with similar concerns should obtain their Trusts CP11 Policy on RT where applicable.

“Lowered oxygen availability (hypoxia) is theoretically important in the consideration of pharmacology because 

(1) hypoxia can alter cellular function and thereby the therapeutic effectiveness of the agent, 

(2) therapeutic agents may potentiate or protect against hypoxia-induced pathology, 

(3) hypoxic conditions may potentiate or mitigate drug-induced toxicity, 

(4) hypoxia may alter drug metabolism and thereby therapeutic effectiveness, and 

(5) therapeutic agents might alter the relative coupling of blood flow and energy metabolism in an organ. 

The prototypic biochemical effect of hypoxia is related to its known role as a cofactor in a number of enzymatic reactions, e.g., oxidases and oxygenases, which are affected independently from the bioenergetic effect of low oxygen on energetic functions. 

The cytochrome P-450 family of enzymes is another example. Here, there is a direct effect of oxygen availability on the conformation of the enzyme, thereby altering the metabolism of drug substrates. 

From: Hypoxia—implications for pharmaceutical developments.  Sleep Breath. 2010 Dec; 14(4): 291–298. Published online 2010 Jul 14. doi: 10.1007/s11325-010-0368-x

Psychosis Due to a Medical Condition
This diagnosis is made when a patient’s medical history, physical examination, or laboratory test results suggest that one or more medical conditions have caused brain changes that might create psychotic symptoms*, and those psychotic symptoms (e.g., hallucinations, delusions) are in fact present since the medical condition has occurred. 

A surprisingly large number of different medical conditions are capable of creating psychosis. Neurological conditions that may cause psychosis include brain tumors, cerebrovascular disease, Huntington’s disease, multiple sclerosis, epilepsy, auditory or visual nerve injury or impairment, deafness, migraine, and infections of the central nervous system. 

Endocrine disturbances include increases or decreases in the activity of the thyroid, parathyroid, or adrenocortical system. 

A decrease in blood gases such as oxygen or carbon dioxide or imbalances in blood sugar or electrolytes are some metabolic causes of psychosis. Finally, autoimmune disorders with central nervous system involvement such as systemic lupus erythematosus have also been known to cause psychosis.

Psychosis caused by a medical condition may be a single isolated incident1 or may be recurrent, cycling with the status of the underlying medical condition2. Although treating the medical condition often results in the remission of the psychosis, this is not always the case. Psychotic symptoms may persist long after the medical conditions that have caused them are cured.

*Single doses of psychotropic medications can cause brain plasticity changes.

1 Such as those causing PTSD.

2 Caused by incorrect titration of psychotropic and neuroleptic medication

The other thing I have done is give one month’s notice under a GDPR request since I am being labelled in a defamatory manner made out to be aggressive hostile and threatening. I will let you know the result in due course but I am once again still waiting for the CCTV footage which could not be produced in the first instance so in that case I will want alterations done to the file records and for this I have written to both areas, both Enfield and LPFT Trust and Councils.

I will finish by saying it is the ultimate punishment to deny contact and impose restrictions such as 2-1 supervised visits. It is an infringement of human rights. Unless there are concerns of harm towards a vulnerable person by violence then there is no cause to impose such restrictions and any safeguarding should be done in an open and transparent manner. It would appear that such punishment is being dished out to cover up failings and try to protect certain professionals and to isolate a vulnerable person denying her with the sort of emotional support she needs. It is inhumane to emphasise with a patient – total abrogation of medical ethics. What LPFT are dong is isolating Elizabeth from anyone who can offer her real support, an appalling and egregious abuse of power. I would accuse LPFT of not wanting Elizabeth to develop long term friendships because they give her personal support. For instance she has made a new friend who is helping her on the ward right now.

It is not that I am a danger to Elizabeth they wish to move her far away as yet more punishment it is because Dr K thinks I am a bad influence when they try to play on no capacity so if Elizabeth is considered to have no capacity to the point the team have to decide everything they think in terms of their own best interest abusing their power and control stating she has no capacity yet how then can I be of any influence if she has no capacity. Utterly ridiculous.

Elizabeth’s request for another RC has been ignored and it is most disturbing at reading more file paperwork today that something needs to be done to stop this abuse right now.

When I suggested too high a dosage this is being ignored and so is the sebaceous cyst that needs to be removed.