Moving to Lincolnshire, hoping to provide a nice home for Elizabeth of her very own in the right environment has been a huge mistake. She was not sectioned previously.

We moved on 15 September 2021 and Elizabeth is still held a prisoner forever on a locked acute ward where rules are strict and rigid and even the prison opposite offer more choice in visiting hours and all the time over many months on end we did not know of Enfield’s involvement in this. I believe the provision of care through LPFT was being funded all the time by Enfield and no wonder why there was no incentive to do anything about the situation other than keep Elizabeth on a never ending section and treat her like a restricted prisoner on DoLs whilst at Ash Villa.

In order to achieve a never-ending section all you need is Trust and Council to work together and be totally dishonest. They do this by abuse of power and process and through the legal system in hearings that go on behind your back at public expense and with threat of huge costs amounting to SLAPPS, using their unregulated legal services department to aid their intentions. They then gang up against you and what chance do you have against a multidisciplinary team backed by a team of dishonest AMHPs who will stop at nothing to present as many untruthful statements as possible. They well and truly have their own agenda.

The council has been dishonest and achieved their ends by a multitude of means playing on of completely flawed capacity assessments not done in line with Masterman- Lister and not fit for purpose. The MCA2005 is used to take control from patients and their families. In most cases this really is in the best interest of the patient but is open to abuse as is everything else. The best interest of the institution are often “factored in” even though that is entirely contradictory to the spirit of the legislation and code of practice. The system is rife with abuse played on by capacity and what they think is best interest. There have been about 5 capacity assessments done and two by the CoP that did not go their way. To achieve their aims doctors raised the drugs around this time to enormous levels:

From 300mg a fortnight to 400mg weekly with 10mg clopixol tablet on top and on top of all this countless rapid tranquilisations occurring every few days which prompted other patients to complain out of concern. Where then was the social services who did nothing?

Capacity is played upon by the team with numerous capacity assessments geared to fail – Shame on you – especially two doctors and 1 SW. Once they have this as ammunition they can make sure that any applications in Elizabeth’s own right will fail on the basis of capacity and what they see as BI. Elizabeth will never be able to challenge – it is designed to shut down any chances of appealing a decision. How corrupt is that! How many more councils and trusts act in this dishonest manner and get away with things?

Elizabeth’s comments “I dont know why this is happening but I reckon it’s social and the services. I do not want the official solicitor to represent me at any time.” Elizabeth had sent this email to me with her views.

Social services then set about destroying the family putting one relative up against the other and cutting others out of everything including Elizabeth herself. It is one thing doing that to me but to my vulnerable daughter it is an absolute disgrace on the part of LINCOLNSHIRE COUNTY COUNCIL AND LINCOLNSHIRE PARTNERSHIP TRUST.

Held like a restricted prisoner for so many months on end whilst at Ash Villa and continuing at various other institutions thereafter, not allowed any leave for months on end, and flanked by staff listening to every word of conversation sometimes only half an hour was given in the grounds outside made me enquire as to whether there was DoLs in place. I always thought it should be the least restrictive care but that is not how Lincolnshire Partnership Trust work.

The care and treatment of my daughter amounted to torture at one particular hospital and this continued at others. Frequent rapid tranquilisations and seclusion with the excuse that this is done to ensure her safety when she is of high risk of mortality and choking. This is not treatment at all when you think about it. It is torture.

There was such frequency in the rapid tranquilisations and seclusion that patients told me they slept with their door open/complained and said they were doing the safeguarding. Patients would approach me in the grounds outside to tell me what was going on and about their concerns that she was being over-drugged. She is a poor/non metaboliser, proven by scientific tests. So the excuse is that it is necessary for seclusion and rapid tranquilisation every few days to ensure safety in line with Trust Policy being adhered to but other patients told me that she was being picked on and the injections were very frequent and for the slightest reason and therefore this “treatment” could even be life-threatening because Elizabeth is a poor/non metaboliser as proven by scientific P450 liver enzyme tests but the CQC’s response is featured in my previous blog and it is quite a threatening letter from someone called David from the Inspection Team.

So you get cut out of everything and excluded, then a string of different doctors are appointed, none of whom have stayed long in their position or offered any leave. These ‘episodes’ were frequent at the time, triggered by fear and the thought of dying in hospital. It is so wicked/cruel and it is no wonder why anyone would have moments of extreme distress as there is no end in sight and all they could do was pin her down and inject her on every occasion. On one occasion Elizabeth was taken to a room to be rapidly injected at Charlesworth Ward, the walls splattered with blood that had not been cleaned off. She described it all to me. This is not treatment at all. Priority on the part of the Council and their Employees was to get rid of the nearest relative and this has been the same case in the previous area and they achieved this simply by ripping you to pieces with their words and criticisms, undermining you in character and person. They will try and say you are of risk to the vulnerable person. They will try and say you act against the best interest of that person and absolutely hate the fact I have this blog which is highlighting the awful treatment my daughter is getting and at least this blog is open and honest and open to criticism from anyone and all the time Elizabeth knew about it and has written on it herself. The words and comments they use amount to defamation of character. When they say a patient has no capacity their capacity assessments have been no fit for purpose and how many more affected. It suits themselves to conclude this but they are protected and seem to be above the law and there is plenty of taxpayer’s money to do what they like with and there is no accountability. That is why my blog is so important in highlighting exactly what is going on under the MH and every blog I write goes to Elizabeth for her approval. I now want a full enquiry into everything as we have not been treated fairly and others can also be affected which is why it is important this is challenged and made public.

Elizabeth had a small room with no wardrobe just a locker. Conditions were described as squalid and she was described as unkempt. She used to spend much of her time in bed in her room missing meal times. I never got to see the room but from the description it sounds almost like a cubicle. She contracted covid twice at Ash Villa. She loves animals and especially birds but was desprived of fresh air and exercise and being able to enjoy the sight of birds in the sky. She was treated very differently to other patients and I was told “she is on “a different kind of section” by a staff member.

Elizabeth was described as “isolating and uncommunicative” “the most complex case ever seen” when in fact she could not in fact stand the noise and kept saying “I am autistic” only to be gaslighted by various staff putting words into her head that she had schizophrenia. She had hurt her back once in a moment of extreme distress rolling on and off the bed. Again the excuse was rapid tranquilisation was necessary for health and safety. The episode, one I saw at home the day before we had to see the crisis team, looked like someone having an epileptic fit and she appeared to be delirious. She was not lashing out at people. All that was needed was just a few adaptions to the annex but nothing has ever been done to help us since we moved and yet they knew. The difference is that staff do not inject people if they are having an epileptic fit. It would be much safer for her to be at home as at least there are carpets.

The episodes were said to be early evening. Elizabeth was abused at a scheme in the former area at night but this was never acknowledged and simply covered up. An ‘episode’ was not lashing out at staff but just contained in one room, rolling about on the floor, screaming and talking in a delirious manner yet is referred to as “challenging behaviour”. In two years not once has Elizabeth ever seen a psychologist. All physical health appointments Enfield were suddenly taking seriously were cancelled as unnecessary by Lincolnshire Partnership Trust.

Castle Ward where Elizabeth is right now is a brand new ward that has ensuite shower rooms and I think because of the better environment Elizabeth has become settled more but what ever possessed the new doctor to raise medication from I think it was 300mg to 500mg a fortnight to the point she can barely walk. I think this is being done once again to tamper with Elizabeth’s capacity and I am very concerned for her life right now.

They want to put her back on a drug she nearly died on ie Clozapine. They want to send her back to London, a place I was glad to move away from. It could be because the Clozapine clinic are not happy with blood tests in which case this is really alarming. I have heard all this information from Elizabeth.

I know they ultimately want to destroy my family completely and put her into care and on DoLs so she can never come home in accordance with her wishes and play on best interests so they get what they want. How vile – I could never work in a profession that is intent on destroying families and that goes about matters in the most underhand dishonest way.

I am her only visitor and I bet they have not even read she is gluten intolerant yet in the evening just a sandwich is given.

Elizabeth said “I am sorry for putting you through all of this“. However it is Lincolnshire Partnership Trust and Lincolnshire County Council with the involvement of Enfield behind everything.

There are many similar cases that come before the Court of Protection who I cannot praise highly enough. Back in 2014 following release from Cambian after 18 months Elizabeth was sent to an awful care home rated good by the CQC. I have got all the CQC inspector’s comments and they are clearly not on your side but that of the institution. One day Elizabeth came home and did not want to return. When I heard why she was unhappy I said “you are not on a CTO – you can come home if you want”. There followed enormous abuse because the care home called Phoenix House Stepping Stones refused to release the treatment and local social services refused to help get it in place leaving me to have to go to Harley Street and for us to appoint Irwin Mitchell in a case called “deprivation of medication – community care”. Suddenly social services in Enfield were taking me to court for DoLs, severance of contact and return of Elizabeth to Phoenix House in Northampton. I had no representation in court myself. I think it is wrong that there is no representation for families in cases where Council’s/ Trusts seek by way of stealth to take control of a vulnerable person’s life when all along they have capacity. Even those who cannot speak have capacity and specialist speech and language experts should be involved in determining the wishes of those people who may want to come home instead of go into a care home.

Our experience of council provisions of care has been so atrocious that I decided to move to provide a nice living accommodation and there is enough room for carers to live in.

MESSAGE TO LINCOLNSHIRE PARTNERSHIP TRUST AND COUNCIL

You have subjected us to months and months of absolute hell. You have been dishonest in doing what you have done and set out to achieve at the expense of the wellbeing of my vulnerable daughter. You have neglected her needs all along and failed to work with the family who would not have stood in the way of visitors for Elizabeth on home premises. You never intended for her to come home because of lack of provision in the community of East Lindsay district. However the environment alone would have been great and this is a caring community. You have achieved your ends by bullying and threatening and tried to destabilise Elizabeth by sending her to so many acute facilities that are completely wrong after so very long with current threats of going back to London cutting us all out like we are nothing and do not exist. You are public organisations that need to be made accountable and should not seek to hide behind confidentiality when Elizabeth asked me to take matters to the High Court meaning her real name would be mentioned.

You know very well Elizabeth has capacity and nothing you have done in terms of this is worth the paper it is written on.

I truly respect the Court of Protection as it is transparent and no way do I want you to hide behind confidentiality and neither does Elizabeth who has requested I take matters to the High Court.

My last words are see you in court and every word I say in an open and transparent manner reflects the hell that other families are going through right now and that is why such a case should be of public interest. I would suggest both Council and Trust think very carefully about allowing Elizabeth to come home in accordance with her wishes.

Lincolnshire Partnership Trust’s website contains an article on the two new wards Ellis and Castle. “Welcome to Ellis and Castle Wards at the Peter Hodgkinson Centre, Lincoln County Hospital.

Just to skim through it states they are acute adult inpatient wards. Ellis is male and Castle female.

“Lincoln welcomes two state-of the art mental health wards who provide crisis support for adults at Peter Hodgkinson Centre” comprising a total of 19 beds with separate ensuite accommodation and access to a courtyard area for peace and quiet. “

The first thing I noticed was how noisy it was on the ward with constant alarms going off yesterday.

I would agree there are lots of light and open spaces.

The dining room was overlooked by staff office and the outside space was nice.

I did not see inside a bedroom and as for inside space to relax – quiet room where I was allowed to visit but even in the quiet room you could hear the commotion of the ward outside.

How we will work with you?

Allocated bedroom, named nurse and consultant.

I did not ask Elizabeth who the named nurse was but the consultant is a doctor called Dr Khochar. I will correct the spelling later if I have spelt his name wrong. There also seems to be another doctor in the background, namely Dr Toby Greenall from Ash Villa. I dont know what his involvement is as Elizabeth is no longer at Ash Villa, a hospital that requires complete and extensive refurbishment to give every single bedroom an en-suite and outside there is a tennis court that could be converted into a swimming pool which could be good for the patients and much more could be done with the grounds and facility to bring it up to standards.

So far the doctors under Lincolnshire Partnership Trust have been:

1. Dr Ismail Charlesworth Ward who wrongly tried to indicate Elizabeth needed some sort of nursing care which is nonsense.

2. Dr Shahpasandy – who refused his own research into the Limbic System. Under his reign Elizabeth was treated like a restricted prisonegs

3. Dr Ismail again

4. Dr Kumar drugs raised from 400mg fortnightly of Clopixol depot to 400mg weekly plus a tablet of 10mg of God knows what

5. Dr Islam

6. Dr Suleyman who did a flawed capacity assessment for court

7. Dr T Greenhall who is the only Dr to give any leave but then took away this leave after hearing Elizabeth had one of the frequent ‘episodes’ at home he had witnessed at Ash Villa triggered by having to visit crisis team next day, when all that was needed was a few adaptions for the little bungalow we provided. I wonder what his involvement is now apart from trying to push Clozapine without having read what happened when Elizabeth was put on this at the shocking Royal Bethlem (Bedlam) NPU Beckenham?

8. Dr Memon of Cygnet who I happened to like as he is a Neuropsychiatrist and was interested in Elizabeth’s physical health and called an ambulance after witnesses an ‘episode’.

9. Dr Mohammed of Ward 12

10. Dr Khochar of Castle Ward who is also trying to prescribe Clozapine according to Elizabeth. I have not met him yet so it is too early to comment. However Elizabeth was upset that he was trying to push clozapine as she can remember how ill she was on this chemical. It did not work anyway.

A total of 10 doctors

Hospitals under LPFT alone:

1. Charlesworth Ward PHU Lincoln County Hospital (dormitory accommodation)

2.Ash Villa Sleaford

3. Cygnet Appletree

4. Ward 12

5. Castle Ward Lincoln County Hospital

MY FIRST VISIT TO CASTLE WARD

I was in the area so my visit was unplanned. I had asked to briefly see the Carer’s Champion but was told she was in a meeting. I was then told visiting hours were between 6 – 8 pm. I asked if they could possibly accommodate me a bit earlier as I lived a fair distance away and I do not particularly like driving in the pitch dark but I was told firmly that those were set visiting hours and there would be no flexibility whatsoever. When I commented about visiting on lots of other wards was normally after 2 pm that this was not the case on Castle Ward except at weekends. The receptionist was suddenly joined by a male colleague from the crisis team who just stood there listening. It was as though they were expecting trouble from me as I had dared to criticise their rigid visiting hours. I was not demanding I saw Elizabeth there and then but found it a bit intimidating to suddenly have a witness appear from nowhere. I then said I wanted to go to the Trust office which address I was given but when I looked up how far it was, I could not be bothered as I had already walked a fair distance from where I parked. Instead I had to kill time as I had 6 hours wait to see Elizabeth so I went for a walk and looked around Wickes, then spent the rest of my time in the cafe inside hospital main entrance and then sat in the chapel where it is truly peaceful. Whilst there, I wrote a prayer and put it on their “tree” and spoke to someone inside to tell them how we had been treated and that I was at the chapel a year ago in the same position as now. I had asked if they visited patients on the mental health wards. I do not think Elizabeth’s religious needs are being met on Castle Ward. If she does not have any leave and cannot visit the chapel then this is very wrong.

I then made my way to the ward. I had earlier on dropped in a few things for Elizabeth who has said she is starving hungry in the evenings when they get just a sandwich. She has proved though she is capable of ordering on line and though they say she has no capacity this rubbishes their claims completely.

I was allowed right on to the ward and shown to the quiet room and Elizabeth was smiling and happy. The food I bought her earlier was healthy. I understand rules are rigid on this ward in that patients can only order a takeaway once a week at the weekend.

I then helped Elizabeth sort out the missing shopping orders through Deliveroo who to be fair promptly refunded her.

Elizabeth told me she could barely walk and needed help to walk and that her medication had been raised enormously and she felt her struggles to walk were associated. I thought not again! – don’t these doctors read the files properly and especially the Discharge Note pointing to only physical health as well as the scientific P450 liver enzyme results of “non metaboliser“. Elizabeth was not sure as to what level the Clopizol had been raised but said she was certainly suffering as a result. I accompanied Elizabeth to the nurses station in the centre of the dining room. Elizabeth asked the quantity of drugs prescribed and found out the depot had been raised to 500mg fortnightly. She also said that being administered these drugs was very painful. I complained about this raised level of drugs stating back in Enfield she was being taken off the drugs by 50mg every six weeks due to her discharge note stating only physical conditions ie “abnormal findings on scan pointing to cns”. She was due a reduction down to 250mg when we moved to Lincolnshire. One of the male nurses was taking it seriously that Elizabeth complained of pain to joints and not being able to walk because of the raised injection. There have been no incidents for weeks on end so why raise it! Before we came to Lincolnshire Elizabeth was not even sectioned but Lincolnshire Partnership Trust seized the opportunity to hold her prisoner on various acute wards with the intention of institutionalising her into care for the rest of her life, all paid for by Enfield, our former area (still involved administratively). Probably that means they are still paying. They have gone about things in the most disturbing and dishonest manner which I intend to expose as this applies to other areas too and is of public interest.

So what has been achieved by such lengthy two year imprisonment – the answer is absolutely nothing. Not once has Elizabeth seen a psychologist. How many times do I have to tell LPFT there are underlying physical health concerns and that I have had extensive tests done privately into Endocrinology on the advice of Dr Moncrieff and then there are the scientific tests done on metabolising and further genetic tests done that have prompted me to contact Professor Hanns Lochmuller and other leading professors. LPFT are negligent in ignoring underlying physical health and also on a legal basis in terms of their conduct.

So what has upset me about Castle Ward? ……

The visiting hours so rigid and un-flexible to carers like myself who live a fair distance away. Lincoln prison opposite give more consideration to visitors. (having said all this it is every bit possible that other carers and patients are treated better than us and there is flexibility towards them). I got this impression from talking to patients outside the unit.

Parking is all for staff with permits and no thought for carers whatsoever. It costs c£6 a day to park at Lincolnshire County Hospital. I could not see any disabled parking bays for any disabled carers. It is not like visiting someone in the general hospital as people under MH can be stuck there for months and months or years on end so no thought to carers of people stuck on never ending “sentences” under LPFT

There does not seem to be any leave arranged yet but I have not properly checked. Elizabeth had a CPA where 9 people attended and no advocate was present. I do not know if Voiceability were even aware of this but I will contact them. I was not invited myself yet am the only visitor for my daughter even though I have been ousted as her nearest relative in the most disturbing manner.

Elizabeth was told by RC Dr Khochar that “you are on an on-going section”. The only way you will get off is if you call for a tribunal. Several times now Elizabeth has tried to appoint solicitors for this purpose and they have not got back to her. Other patients on Ash Villa tried to help her but what about the advocates? An advocate has no power at a tribunal but surely the advocates should be helping towards getting a tribunal with solicitors in hand especially in the current disturbing circumstances which I cannot go into. There has not been a solicitor appointed for some time as there has been several changes in ward and since my displacement no-one appears to be helping. However it does make me wonder – clearly they have done what they did to make sure Elizabeth cannot make any applications in her own right. It will be interesting to see what happens as if Elizabeth did request a Tribunal only to have her application quashed on the grounds of best interest and best interest for whom exactly??? To me it is best interest of the institution! I wonder also if this is being paid for still by Enfield another area where we were bullied and Elizabeth was abused.

I think the whole process has been unlawful. There has been extreme dishonesty between Lincolnshire Partnership Trust and Lincolnshire County Council in terms of abuse of power and process. This has led to two years of ongoing imprisonment with decline to Elizabeth’s physical health and no end in sight when Elizabeth was not even on a section prior to moving and living peacefully in the community and compliant. Elizabeth has said her physical health has suffered irreparable damage. Whilst a nurse yesterday took seriously Elizabeth’s concerns and examined her in the treatment room with me present, he has promised to relay this to Dr Khochar and team. If nothing is done about reducing the drug to former levels it is affecting her ability to walk and causing sensitivity to her hands this needs to go to the CQC who rate them good.

When someone has an endocrine dysfunction this is physical and NOT MENTAL HEALTH and should not be ignored. Referrals to specialists need to be made. A medically untrained social worker described Elizabeth’s ‘symptoms’ as those observed in patients with hypothyroidism “bouts of emotional dysregulation – aggression towards others” “dissociation and disinhibition – struggles to manage her thoughts, feelings and behaviour.” He is not even qualified to adduce evidence of a clinical nature but all of these symptoms are associated with dysfunctional endocrine functions – defective thyroid function. Rapid tranquilisation and seclusion are not recognised treatment for hypo or hyperthyroidism. However in a slightly better environment of a new ward Elizabeth is more settled and there has been no incidents that would warrant a massive increase in medication.

ALL PSYCHIATRIC PATIENTS SHOULD HAVE REGULAR ENDOCRINE FUNCTION TESTS AND NEUROLOGICAL SCANS FOR DYSFUNCTIONS IN THE AMYGDALA HIPPOCAMPUS AND PRE-FRONTAL CORTEX. IT IS BLINDINGLY OBVIOUS (except to many psychiatrists) PRECAUTION THAT PATHOLOCAL DISORDERS SHOULD BE SCREENED FOR.

I am going to write to Dr Khochar asking for Endocrine tests to check on Elizabeth’s existing conditions and if he refuses I think he should put his decision in writing to me with a full explanation of why the endocrine tests and brain scans are not required. All parents and carers should consider this.

A leading expert has written about research on inflammation of the brain and how it affects medication efficacy. Apparently there were 20 cases where patients were prescribed clozapine and had concomitant inflammatory disorders including those caused by pathogen infections and autoimmune conditions. The inflammation increased the serum dose ratio and in 11 of the cases it was recommended to halve the dose in 5 others to reduce it by a third. Serum concentration is the major issue with this drug rather than dose and a high serum concentration can occur with a moderate dose. It is this ratio that creates the problems with ADR’s and metabolism failure due to cytochrome P450 down regulation.

The maximum dose in all cases had been 350mg and nowhere near maximum but still the serum dose ratio was adaversely affeced by the inflammatory disorder the patient had.

Any patient presenting with inflammatory conditions need close monitoring to avoid ADR’s and dose modification is almost certainly necessary. It should be noted that inflammatory conditions are commonly seen in patients with endocrine disorders like Elizabeth.

Elizabeth has twice had covid at Ash Villa

“Covid-19 can cross the blood brain barrier and has caused manifestations of psychiatric disorders in some patients.  It is a clear and up to date example of a physiological cause of mental illness.  Psych drugs and ECT can facilitate pathogens entering brain tissue.  The powers that be deny this in the face of mountains of evidence.”

Medical science is in the hands of powerful lobby groups and pays only lip service to research ethics.  If doctors looked for lesions, infections, inflammatory causes of poor neurotransmitter effectiveness and metabolism problems our psychiatric hospitals would be virtually empty.  They don’t of course.  They prefer the cosy myth of psychosis being a lifelong chronic condition and by doing that create a self fulfilling prophecy.

There is no decisive evidence supporting a gene theory of schizophrenia in spite of decades of biopsychs looking for one.  Over the same period it has been decisively proven that gene markers  for cytochromes have enormous influence on the efficacy of drugs.  We were right all along on this but the biopsychs still maintain that they are right on every aspect.

The knowledge of physiological causes of disturbed mental states is older than psychiatry itself.  The biopsychs (friends of the drug companies) have fought long and hard to maintain the mythology of genetic causeds of schizophrenia et al and never come top to the level of evidence needed.

Bob Johnson and Antony Forde who are both expert in determining interview responses vis-a-vis capacity  say that Elizabeth’s responses indicate not only capacity but clear insight.  This also brings the diagnosis into sharp focus.  Indeed it contradicts many of the diagnostic signs in schizophrenia.

Currently working on neurodegenerative disorders and research into potential treatments (prognosis currently very poor).  The psychiatrists  (apart from the enlightened ones) absolutely ignore brain lesions, BBB transmitted infections and drug related protein damage in the brain.  Most of them know nothing about the glympathic  system and how important it is in clearing the brain of protein detritus.  We know that neuroleptic medications can transport neurotoxins across the BBB.  Noone takes any notice of that either on the wards.  They are totally in the grip of Big Pharma and the Royal Colleges who take their coin.

Whilst idiotic diagnostic criteria still form the basis of the decision on capacity (also in contravention of the purpose of the legislation) short-sighted medical professionals will continue with their preposterous conclusions.  There is no such thing as schizophrenia or personality disorder.  Patients present with disordered behaviour for a huge number of reasons and the majority have physiological causes.  It has been discussed in great detail the effect of inflammation on neuroreceptors and neurotransmitter pathways.  The headshrinkers on the wards completely ignore this gigantic blue whale in the bathtub.

“The MCA2005 is used to take control from patients and their families.  In most cases this really is in the best interest of the patient but is open to abuse as is everything else.  The best interest of the institution are often ‘factored in’ even though that is entirely contradictory to the spirit of the legislation and code of practice. The MCA2005 is used to take control from patients and their families.  In most cases this really is in the best interest of the patient but is open to abuse as is everything else.  The best interest of the institution are often ‘factored in’ even though that is entirely contradictory to the spirit of the legislation and code of practice.”

When I phoned Headway some time ago I questioned what it meant in file notes going way back from UCL “anterior region medial temporal compromise”. I spoke to a MH nurse who said training when she was a MH nurse did not go anywhere far enough when it came to expertise of neurological conditions and I thought at the time something should be done about this. How many who end up on MH wards long term with a psychiatric disorder may instead have a physical health condition yet they are all lumped together on one ward that does not cater for the specialism of Neurological conditions and when these patients may be displaying ‘symptoms’ they are wrongly mistaken for ‘schizophrenia’ (which is just an umbrella label for other causes) leading to very wrong/harmful treatment which results in some patients never showing any sign of improvement/recovery like Elizabeth. This has been going on for years in her case now and there has been absolutely no improvement – not one of the drugs has worked and no investigation has ever been carried out into underlying causes when scientific genetic tests have proven she is a poor/non metaboliser. In fact under LPFT they ignored the P450 liver enzyme tests and raised the “medication” to enormous levels but now I am concerned at the extra drugs and constant prn every few days or so. Looking back, perhaps this was done for a reason ie to lose capacity for certain reasons but it did not work.

Whilst I agree with the Oliver McGowan training programme I feel professionals also need to be much better informed/educated in underlying neurological conditions of a physical health nature. There have been occasions when professionals state “you have schizophrenia” in response to Elizabeth saying “no I have autism” and this I feel is coercive. When treatment is not working based upon observation of “symptoms” there could be numerous reasons for behaviour displayed that may resemble schizophrenia when the condition is in fact of a physical nature. Comments such as “mother does not agree with diagnosis” un-medically trained professionals label you as being confrontational/”unsuitable” yet they should not be commenting in such a way or challenging expert opinion brought before them by a parent who has turned to various experts in desperation.

Vulnerable people held under MH on never-ending sections such as Elizabeth because nothing has worked re treatment need to be given the correct assessments to rule out other underlying causes which could be anything from endocrine dysfunction, inflammation of the brain and referrals need to be made to neurologists, immunologists, endocrinologists, geneticists and this is not being done leading to long term institutional care and harmful wrong treatment with excessive prn and seclusion in completely the wrong environment of a MH ward.

ENCEPHALITIS

Symptoms of encephalitis vary depending on the affected area of the brain, but often include headache, sensitivity to light, stiff neck, mental confusion and seizures. It’s important to see a doctor promptly if you are experiencing symptoms, which may not seem troubling at the time.

What is the life expectancy with encephalitis?

As with treatment, autoimmune encephalitis recovery depends mainly on the specific clinical case, the form of encephalitis, and the after-effects of the disease. However, the autoimmune encephalitis life expectancy after encephalitis, in general, ranges from 60 to 90 years in different countries.

Encephalitis can damage the brain and cause long-term problems including: memory loss (amnesia) personality and behavioural changes. speech and language problems (aphasia)

How many people have died from encephalitis?

Results. Globally, 1,444,720 incident cases, 89,900 deaths, and 4.80 million DALYs related to encephalitis were estimated in 2019. The age-standardized incidence rate and age-standardized mortality rate (ASMR) decreased from 23.17 and 2.18 to 19.33 and 1.19 per 100,000 person-years over the past 30 years, respectively.

What happens if encephalitis goes untreated?

Left untreated, autoimmune encephalitis can quickly become serious. It may lead to coma or permanent brain injury. In rare cases, it can be fatal.

Can encephalitis go undiagnosed?

There are also non-infectious causes such as autoimmune/rheumatological diseases and certain medications. Up to 60 percent of cases of encephalitis remain undiagnosed.14 Feb 2023

How does encephalitis affect behavior?

Following encephalitis, some people may experience emotional and behavioural changes including low mood, anxiety, depression, frustration, aggression, impulsivity, disinhibition, and/or poor emotional regulation.22 Jun 2017

Can encephalitis lead to dementia?

Most cases of encephalitis in adults are related to viral infection by HSV-1. This scenario enables the clinical evolution to neuroinflammatory and glial damage processes, ¹⁰ mostly threatening immunocompromised or immunosuppressed patients, whose possible unfavorable prognosis are cognitive impairment and dementia.

Does encephalitis cause altered mental status?

Important elements of history include immune status, exposure to insects or animals, travel history, vaccination history, geography, and time of year. The most common sign and symptoms are fever, headache, seizures, and altered mental status.

Seizures – this appears to be what Elizabeth is experiencing and I have read the care plan where it states “of high risk of mortality and choking”.

Elizabeth needs an endocrinology assessment (particularly since I have already proven in private tests that she has an endocrine dysfunction). She needs to see an immunologist and a geneticist because nothing is working with her care and treatment and she is stuck on a drug which is expensive and a complete waste of money. She has not shown any improvement whatsoever in nearly two years under LPFT and prior under BEHMHTNHS – it even states in file records listing all the useless drugs that she has not responded to “treatment resistant” ie as confirmed in scientific tests “poor/non metaboliser”

I have questioned whether Elizabeth could possibly have a rare genetic condition such as “Huntingdons” or similar but this, along with everything else, has not been explored:

HUNTINGDON’S DISEASE:

Huntington’s disease is an illness caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do).

The problem is that conditions such as this are for specialists to look into and under LPFT even an MRI scan has been denied despite the discharge note stating “abnormal findings pointing to CNS” and so have they ignored the extensive private endocrinology tests which is highly negligent. The top priority was to try to take away the POA from us. I know and have proven that there are underlying physical health conditions but when I asked for an endocrine assessment to check on what was already revealed privately, this was refused by doctors under LPFT. So was the MRI so I paid for the MRI scan to be done privately in Sleaford because I felt it was highly negligent on the part of doctors (especially one who did research into the Limbic system on another patient) to deprive his own research when it was discovered his former patient had inflammation of the brain not schizophrenia and had to be taken off the clopixal depot. He was displaying all the “symptoms” of schizophrenia by the way yet he did not have schizophrenia.

When a patient is admitted to a MH ward they are given very basic information on the drugs. It is not right/fair that patients are being misled in this respect to take treatment for life that does not even work for the sake of convenience without being offered the chance of proper assessments. It is wrong to do things on a trial and error basis and experiment on lots of different drugs when they should be doing assessments instead and they could be causing injury by such experimentation. It is no wonder some have anger issues because they are being ignored for the sake of convenience and besides anger is not a MH disorder whatsoever. It is not psychosis either. In fact it is quite understandable. Imagine if you were told you have schizophrenia and have to take drugs for life. This is a load of rubbish when what condition does the patient really have of a physical nature which might need a completely different treatment.

“Excessive use of prn is scandalous and indicates appallingly bad levels of patient care. If a patient remains in crisis for more than 48 hours they should have the drugs reviewed immediately as the failure to respond is cause by inability to metabolise. The episodes you describe are almost certainly caused by physical disruption in the meso-limbic pathway and prn medication will not work if receptors and pathways are blocked due to inflammation. A simple blood test will indicate inflammatory markers and if they are detected they should carry out a brain scan in the temporal lobe area. Elizabeth is quite right that if they left her alone during episodes with observation from a careful non invasive distance she would probably recover within hours or even minutes.

“Neuroleptic medications will cause signs resembling Chorea and they will normally subside if the medication is withdrawn. Frequent prn medication by injection will cause this effect to be manifested and too frequent use can cause severe neuronal damage by constantly blocking receptors and pathways. Inflammation in the mesolimbic pathway will interfere seriously with cognitition and make psychotic rebound states more frequent and pronounced.

The use of prn medication simply to quieten down a patient is coercion not medical treatment and a violation of just about all of the principlist medical ethics.

Elizabeth has had countless rapid tranquilisations on Ash Villa and Cygnet and already two on Castle Ward though I am checking on this right now and I will report each time. Message from Elizabeth: Received today (13.08.2023 at 17:18) “Hello some nurses gave me an injection two days ago. One with blue hair from Charlesworth Ward – one was a depot so what was the other one for???”

The P450 liver enzyme tests have been adopted by the NHS but how many people know about this. The results were “poor/non metaboliser”. The tests should be offered to everyone before prescribing rather than trial and error for many years.

What is disturbing is that not all file records are passed on from one hospital to another. For instance, Cygnet to Ward 12 and to Castle Ward and I said this was extremely wrong. I said that the NHS were paying for Cygnet a huge amount and so should have all the file notes/records. How on earth can they provide accurate care without reading the notes of a former hospital?

For any mother whose son/daughter is having frequent injections of prn then they should turn to the CQC and to Maria Caulfield and Steve Barclay who I feel has been dismissive of my complaint referring to MH rather than physical health. I as a parent want to know how many times Elizabeth has been injected under Ash Villa and Cygnet Meadowfield and I am keeping a close watch on Castle Ward. She was injected once on Ward 12, When you look at the highlighted comments above The episodes you describe are almost certainly caused by physical disruption in the meso-limbic pathway and prn medication will not work if receptors and pathways are blocked due to inflammation. I want some answers as I feel Elizabeth’s life is at risk under LPFT.

In fact the more mothers and fathers who get together on this the better as then the CQC cannot say “we cannot investigate individual cases” . The DOH need to look into this matter urgently and not respond with their standard letters to say they cannot intervene in individual cases when there are many cases involved and I would like to be contacted by any mothers and fathers concerned as no way should a vulnerable person be subjected to frequent prn which is torture and this is something I want the CQC to investigate especially in the case of Ash Villa where patients reported to me as well as Cygnet Meadowfield although I was pleased with Dr Memons who is a Neuro Psychiatrist and seemed to take a genuine interest. However, even a Neuro-psychiatrist has limitations as he is not an expert on genetics or other fields such as endocrinology or immunology and to check on Metabolic metabolism dysfunction is why I am turning to the SWAN CLINIC.

In terms of stigmatising words – the word ‘disorder‘ should be dropped as it may not be a mh disorder but a physical health condition awaiting extensive tests that the UK is failing to give to so many vulnerable people trapped forever on MH wards which are not even the correct environment which I think is absolutely disgusting when you think of the vast sums of money being wasted by the UK on wrong treatment for people who never get better because they have been given a label for life that is completely inaccurate – look at the waste of money and impact on the NHS when those people then go on to suffer injury and this is of public interest along with Local Authorities and their unregulated legal services departments, stealth and putting someone into care against their wishes instead of provision in the community- I will be featuring that another time.

In the meantime, I look forward to hearing from any other cases of a similar nature who would like to write their own experiences of Trusts on this blog in respect of frequent rapid tranquilisation and misdiagnosis.

I am also copying in some doctors who are taking the correct approach unlike the UK Government and this matter is of public interest as the UK are wasting vast sums of public money in this respect.

The response below from Maria Caulfield was as a result of a letter from Victoria Atkins MP on my behalf.

“Thank you for taking time to contact me about the treatment of people with severe mental health problems.

Please see enclosed correspondence which I have received from Maria Caulfield MP Parliamentary Under-Secretary for Mental Health and Women’s Health Strategy, in response to enquiries which I have made on your behalf.

I hope you find the response from the Minister helpful.

Yours sincerely

Victoria Atkins MP

Member of Parliament for Louth and Horncastle

First of all re the above letter I would highlight “the treatment of people with severe mental health problems?”. Totally wrong interpretation as I am talking about those stuck under acute/PICUS that have physical health conditions like Elizabeth who are in need of proper assessments especially since care and treatment for MH disorder does not work. Physical health can affect someone’s mental health and I am going to have to go back to Victoria Atkins as the response to me from her department as well as that from Maria Caulfield is totally wrong and totally unhelpful.

I was talking about proper assessments when nothing else has worked and especially when you have proven as a parent there are underlying physical health concerns and have evidence of such.

I am going to write back as many times until I get the right answer addressed.

LETTER FROM MARIA CAULFIELD MP DATED 02.08.2023

“Dear Victoria

Thank you for your correspondence of 18 April on behalf of your constituent Ms Susan Bevis about the treatment of people with severe mental health problems. Please accept my sincere apologies for the delay in writing.

I was very sorry to read of Ms Bevis’ daughter’s mental health problems and the experience she describes. I can appreciate that this situation has caused a great deal of frustration and distress.

I hope you will understand tht the department cannot comment or intervene in individual cases.

As the Parliamentary and Health Services Ombudsman is currently investigating this case, Ms Bevis will have to wait on its decision. If Ms Bevis has any further questions, she may through its website at http://www.ombudsman.org.uk or by email at phso.enquiries@ombudsman.org.uk.

I am sorry I cannot be more directly helpful

Yours sincerely

MARIA CAULFIELD MP

Once again I would point out that the words “severe mental health problems” are completely wrong and nothing to do with my complaint. Again in the second paragraph it is mentioned about my daughter’s severe mental health problems and that is not what my complaint is about at all.

My complaint was about the total neglect of my daughter’s underlying physical health. That is where the frustration and total distress lies.

The Discharge Note said “abnormal findings on scan pointing to CNS”. So what is that then? Central nervous system conditions could be MS or Parkinsons or early onset dementia. When you have extensive private tests done to prove there is an endocrine dysfunction for a start this has nothing whatsoever to do with severe MH problems.

It is no wonder Elizabeth says she is not a person. Like an object she has been sent all over the country for the same “treatment” of rapid tranquilisation and seclusion which I can only describe as torture. Her arm was full of bruises when I visited her on Ward 12 where blood samples have been obtained and I suppose each hospital has to do their own tests and what about more extensive tests in connection with the private assessments I have had done which may involve MRI or ultrasound or referral to specialists????

When nothing has worked so far this is when extensive physical health checks should be done by specialists and not under psychiatric/mental health care.

I have already proven that under Lincolnshire Partnership Trust the treatment of MH patients and their families is woefully inadequate. When I requested an MRI scan I was told it was not necessary as the one in 2015 was “normal”. 2015 was a long time ago now. We are now in 2023 and even I as a mother know this is wrong and neglectful. When I mentioned the endocrine tests recommended by Dr Moncrieff that was ignored and so was all the appointments in London the GP said I should take her to.

Here are the doctors from Ash Villa:

Dr H Shahpasandy (refused his own research into the Limbic system that proved one of his patients did not have schizophrenia but inflammation of the brain). When I asked for this research to be carried out for Elizabeth this was ignored. Patient recovered when taken off the clopixol depot. Considering the discharge note from Enfield that pointed to only physical health concerns this is surely wrong. All appointments for physical health in London cancelled as I was refused the opportunity to take Elizabeth despite the fact the GP surgery said I should go back to London because of long waiting lists.

Dr Ismail – RC of Charlesworth Ward. Appointed again when Dr Shahpasandy left and did nothing both times. Comments in certain file notes were totally inaccurate when it came to my ability to care for my daughter and look after her dietary needs. There was safeguarding instigated under this ward against me and again under Ash Villa whilst desperate attempts were made to take away the Power of Attorney by stating we were abusive. It did not work out but this put us under tremendous pressure at the time.

Dr Kumar – RC only for a short while. Never got to meet him but during this time medication (drugs) were raised from fortnightly to weekly at enormous quantities. Failure to take into account the P450 liver enzyme tests that stated “poor/non metaboliser”. Failure to take into account Endocrine tests that showed dysfunction or to refer to an Endocrinologist. Failure re MRI scan as previous doctors failed.

Dr Islam – I think I met him on one occasion but nothing achieved and he was only there a very short period of time.

Dr Suleyman carried out flawed capacity assessment not in line with Master-man Lister.

In desperation various other nursing staff tried to carry out capacity assessments too to decide on what THEY thought was “best interest” and the main thing at the time was getting rid of the nearest relative which happened to be me at the time. I had not even challenged them but in 23 months – no sign of improvement whatsover.

Dr T Greenall

Unlike any of the others he did give some leave which was going very well considering the torture my daughter endured under this “hospital”. Leave commenced slowly and gradually and progressed to home but they sent the carer’s champion and an OT to visit home. The awful thing was we had to meet up with the crisis team and Elizabeth absolutely hated this because of bad memories. Home is a very large house in extensive grounds overlooking beach and sea. We tried to provide the right environment and knew what worked because of the way Elizabeth came home from Australia even wanting a job. This was because the right care was given ie psychotherapy. It was not necessary to forcibly inject Elizabeth as the professionals from Working to Recovery had the right approach unlike the NHS.

Elizabeth loves animals and birds and we are surrounded by nature reserves in my area, sea and beach. Nothing prepared us for the horrors we were about to face thanks to Lincolnshire Partnership Trust and Council. Under two areas we have encountered bullying and neglect which was our reason for wanting to move anyway hoping for better in a new area however I was sadly very much mistaken. This shows wherever in this country under MH care similar treatment is what you are likely to find. One of the things that was so bad was that Ash Villa were aware of several moments of ‘inconsolable distress’ and failed to provide anything that could prevent any injury. It says in the files she sustained back injury when rolling on and off the bed which is why home is a much safer environment. What we saw was horrific. This had been seen many times by Ash Villa staff but there was no warning as to what to expect in the ward Elizabeth would be in a delirious state as though she was suffering from Akathisia. She would be suffering tremors and shaking. She would be talking in an incomprehensible, delirious manner, rolling on and off the bed and slapping herself/screaming as though suffering from a terrible nightmare. This episode we witnessed went on for at least an hour at home. Since then we have asked for a strong bed as the bed was broken and some padding to the wall as at one point she knocked her head on the wall. This episode has not put me off having Elizabeth home and I think home is much safer. Just imagine an episode like this on a ward where the floor is hard. This would always result in rapid tranquilisation on most occasions and for someone who is a poor/non metaboliser this could be life-threatening. After that all home leave cancelled and back to square 1 again and still absolutely nothing is working because the treatment is wrong and I have proven the diagnosis to be wrong too.

Dr Memon – Cygnet Appletree

I have to say I think Dr Memon is about the best doctor of all as he was not dismissive towards Elizabeth’s physical health whereas all the others refused the scan which I see as negligent. I had the scan done privately. It could not have been at all pleasant for Elizabeth to undergo a scan in a closed scanner because she is claustrophobic but that was all I could get for a brain scan. Dr Memon also called for an ambulance after witnessing an episode.

Unfortunately, according to Elizabeth there were not extensive tests done in A&E. Elizabeth was just brought back to Cygnet who applied rapid tranquilisation frequently – so this was nursing staff administering prn constantly and this was outlined as criticism in the CQC report previously. Imagine being forcibly injected every few days. Same treatment at Ash Villa which prompted several other patients to report to me stating they slept with their door open at night and were doing the safeguarding thmselves. I think some of them raised safeguarding concerns. Whilst at Cygnet we were both keeping a record of how many days Elizabeth went without incident and we got to 4 days then had to start all over again as according to Elizabeth she had been promised she could come home if she went 7 days without incident. She managed to do this before her transfer and then her sudden move to Ward 12 Boston took place.

At Cygnet Elizabeth started smoking, had frequent rapid tranquilisation/very intrusive 15 minute watch/phone initially taken away because of Elizabeth calling police/loss of brand new shoes.

Dr Mohammed – Ward 12 Boston

Elizabeth placed on a dormitory ward. A mixed ward. Totally unsuitable as she tried to gouge her eyes out in distress whilst on Charlesworth Ward. Following another ‘episode’ which must have been distressing for other patients in the dormitory to watch, Ash Villa staff were contacted according to Elizabeth someone called Olive and several others came to inject her.

I asked Ward 12 to let me have the check list of possessions from Cygnet to Ward 12 as I know the brand new shoes are missing and so many things have gone missing so when this happens I believe the items should be replaced. Then I find out that several of her possessions were left behind on Ward 12 including a bank card. It has been a nightmare having to constantly chase up about this.

Castle Ward Lincoln – transferred Wednesday 9 August 2023

No-one has contacted me yet from Castle Ward. I do not know who the doctor is. The only reason I know she is there is because Elizabeth contacted me “Hi Mum I am just getting ready to move to Castle Ward. On Tuesday 8 August Elizabeth wrote “Hello I’m being treated as a prisoner I believe”. I then received a call from the carers champion of Ward 12 to inform me but I already knew. Then Elizabeth informed me she had left her bank card behind on Ward 12. I then had to ring Ward 12 and it was not only this that had been left behind but other possessions.

Response from Maria Caulfield:

In all this time and many years prior to moving Elizabeth has been on treatment that is totally wrong and the only care that has worked has been what I provided myself through Working to Recovery.

This shows how MH hospitals are failing to address underlying physical health probelsms that can manifest in symptoms thought to be schizophrenia or Bipolar when all along no proper assessments are done on physical health to rule out such possibility when nothing else has worked. Instead the vulnerable person is subject to torture and abuse by frequent seclusion and rapid tranquilisation which can be life-threatening. Elizabeth did not have any such episodes before we moved to Lincolnshire.

The question I want to ask Maria Caulfield is “WHY HAS NO PSYCHOLOGIST BEEN ALLOCATED TO ELIZABETH in practically 2 years? Why was she refused vital physical health checks with specialists – already arranged by former area? Why aren’t proper assessments done into underlying physical health conditions which need referrals to specialists. I have proven genetic dysfunction. The tests are well and truly behind the US for genetic metabolising disorder but now there is a specialist clinic in Wales called SWAN but one I have been recommended is Cleveland Clinic OHio. Why are we so behind the US in carrying out proper assessments on physical health.

My daughter’s conditions are PHYSICAL not mental but now she is traumatised thanks to LINCOLNSHIRE PARTNERSHIP TRUST and their inadequate MH care provision. This is a nationwide issue where none of the trusts carry out proper assessments to ascertain underlying physical health causes which could be anything from Limbic System/genetic metabolising dysfunction/endocrine dysfunction. The referrals should be made to an immunologist/endocrinologist/geneticist/neurologist not just by mere observation of symptoms when treatment fails to work.

I was also not happy to hear that Cygnet do not pass on all the records. Why not? especially when the NHS is paying.

Right now it is distressing as none of us can get through on the phone and I have asked several times for the phone to be given back to Elizabeth. I have also asked several times as to whether the bank card and other possessions left behind on Ward 12 have been received by Castle Ward. It is exhausting to have to keep chasing them for response.

FREDERICK STREET MEADOWFIELD

COUNTY DURHAM DH7 8NT

Dr Khalli  Memon (RC)

Transferred from Ash Villa Sleaford Elizabeth was placed on Pippin Ward

Elizabeth was taken there on 28 June 2023.

Ash Villa, Sunday 25 June 2023

Turned up without scheduled appointment as I was unexpectedly in the area. Elizabeth was still in her nightdress nightdress late afternoon.  I had brought her Mexican food.  When I arrived at one point I sat in the foyer and heard that a nurse/deputy manager had alleged she had been pushed but there were varying contradictions on account of what actually happened.  Elizabeth claimed to be in her room at the time and the nurse said she was sitting on a chair however Elizabeth’s account of what happened was very different to what the nurse said. I was informed by Elizabeth the following comments were made:

“I am coming into your personal space and do not give a s**t”.

That would have been provocation and I know this goes on, especially at this institution run by LPFT where I was approached in the grounds outside by several patients who had informed me Elizabeth was being picked on and abused and frequently injected and put in seclusion and that they, the patients were doing the safeguarding. She was certainly treated very differently to other patients as though she was on a DoLs and like a restricted prisoner. Then I found out for 20+ months this facility was being provided and paid for by Enfield, my former area where we could no longer stand living there.

Police were apparently informed. So I made sure when I got home I called the Police myself to ensure they heard Elizabeth’s account of what happened and I got a reference number myself. Each time I asked Elizabeth to repeat what happened, her words did not differ. The alleged incident led to Elizabeth’s abrupt transfer to PICU Unit Cygnet Appletree, Durham completely out of the blue.

Arrival – Cygnet Appletree 28.06.2023

Elizabeth had her phone at Cygnet Appletree to begin with on arrival.  She texted me on arrival.

At 03.03    26.06.23 Elizabeth stated:

“sorry Mum they sprang it on me and I had to leave the hospital to go to PICU”

She then texted me to stated “Meadowfield.”

She then texted me to say “I’ve got a nicer room here at least”

“I got treated to a big mac and fries and chicken nuggets” – message at 03.05

“I have passed on your phone number and they will contact you in the morning”.

“When r u coming to see me?”

“I would like some money”

26 June 2023

“Can you pl buy me some shorts and bring them when you next come plus some sungod sunglasses renegades”

She repeated she wanted some Sungod renegades sunglasses from youtube.

She also asked me “hello when are you coming”? at 16.07.

She had asked for money but when I phoned the hospital they do not have a deposit account for patients.   I ordered a pre paid card as being in hospital would not like actual bank card to go astray.

Elizabeth had not picked up any messages since Wednesday 28^th June at 16.08.

I did get a call from someone the next day but it was very brief.  Just to say she had arrived safely but no further information given.    That is the last I heard from her.

Telephoned Cygnet 01.07.2023

Spoke to nurse HANNAH BROWN Pippin Ward.

I asked if Elizabeth had her phone with her and that I could not get through.  I was told  “sorry I cannot give you any information”

I told this nurse that we pay a contract for the phone.  Again she could not give any information.

I asked about visiting hours and was told to call back in the week.

I felt distinctively like they were deliberately not allowing me to speak to Elizabeth and that her phone had been taken away as she had been asking me to visit. In fact I later found out her phone was confiscated because she had called Police in desperation.

I was informed by this nurse she had to hang up and could no longer continue to speak to me any more as she was the only nurse on duty and there was an alarm going off.   When I questioned her being the only nurse on duty she then reported that there was another nurse there but she was in a meeting.

I was told to ring back in the week.

04.07.2023   Telephone call to Cygnet Appletree

Spoke to Kim – reception who told me there was no direct line to ward or ward phone number to ring on.

She then transferred me to ward – no answer at first so was holding on a long time.

Then spoke to Aaron – Support worker

Then spoke to Adrian – a nurse

Finally spoke to Keeley, Ward Manager who told me Elizabeth had her phone but I questioned this as no messages had been picked up via WhatsApp since since 27 June.

Because I am no longer nearest relative (only Power of Attorney) no one would speak or give me any information but I was not asking for any information.  They would not say how she or allow me to speak with her directly.   Elizabeth has been sent a long distance from home right now – at least 3.5 hour journey there and another 3.5 hours back.

I told Keeley that I needed to speak to Elizabeth as she had asked to see me and I wanted to discuss something with her. I was told that they would pass on the message and if she wanted to get in touch she would. I felt as though contact was being deliberately denied.   I said that I would telephone every day until I spoke to her, that way I would be building up a record as I felt sure that they were depriving contact by not allowing her to have her mobile when other patients were allowed in fact.  Keeley admitted some patients were allowed their mobile phones whilst others were not.   I said surely that was discrimination so she said that it depends on the risk level.   What risk exactly?  I am 3.5 hours away now and cannot visit and this was the one thing Elizabeth enjoyed ie my regular visits whilst at Ash Villa.   So I have decided to ring every single day to build up a picture before deciding upon what action to take.  I have already been told that I could not visit at this stage.  At Ash Villa I was aware Elizabeth had no solicitors and other patients were trying to help her appoint them. On a couple of occasions Elizabeth picked up the phone herself but solicitors did not bother to come and see her or respond. There is no saying whether Elizabeth has got any solicitors acting for her at Cygnet either or whether her nearest relative was helping in this regard or even aware of where she had been placed.

05.07.2023   12.40  Another family member spoke to  Catrina, a  Support Worker on Pippin Ward.  She said she would take Elizabeth to a room so that she can make a call back but no call back was ever received.

Subject: Re: Elizabeth’s Move to Cygnet Appletree

“It is of course the case that the MDT have every right to refer Elizabeth to the PICU and the medical & social work professionals will be the final decision-makers on these issues.  It is PICU policy however that the patient in a PICU is “Nothing about me without me”.  That means that the patient effectively has the last word. No they dont! certainly not to frequent torture of rapid tranquilisation.  No patient can be compelled to take part in the OT and psychotherapy so a simple refusal to do so means they will not be forced.  If they maintain this position they will be returned to the psychiatric hospital. No psychological input given whatsoever just like at Ash Villa and Charlesworth Ward Lincoln. 

Cygnet and Ash Villa can of course transfer Elizabeth back to Ash Villa if she does not respond to interventions or if she tells them she wants to go back there.  Patients are not compelled to remain in the PICU and can be returned to adult care wards.  This often happens within the first six to eight weeks if the ICU interventions don’t work or the patient will not engage.  Elizabeth did not want to go back to Ash Villa and as for interventions every few days it would appear she was injected. I have now requested to know how many times.

The advantages of the PICU over the acute adult care ward are obvious, the presence of a psychopharmacologist alone is miles better than that seen on wards.  Not helped one bit – frequent rapid tranquilisations given.

It is my opinion that the visits will be limited in the early stages of Elizabeth’s stay at this place.  They need time & space to commence the interventions and as I have just said if it doesn’t work they will transfer her back to Ash Villa indefinitely. Never got to visit because of distance but was planning to. Absolutely nothing whatsoever has worked because of no psychological input.

Sent: 01 July 2023 19:00
To: susan bevis
Subject: Re: Catalogue of events

The treatment period in ICU/Rehab is between one and two years.  It involves psychotherapy, work regimens and other time consuming interventions as well as monitored medication. Nothing but rapid tranquilisation.

It is possible that Lincolnshire Social Services have been in touch with the PICU regarding the recent litigation.  It is social services that are responsible for paying for the s.117 aftercare not the NHS Trust. This is not aftercare it is a hospital facility well and truly out of area and must be costing I assume LPFT an absolute fortune.

It is unlikely this will be permanent as there is case law preventing the exclusion of family but they will certainly want to exercise close control since rehabilitation involves far more intensive involvement between staff and patients.  Elizabeth is undergoing exactly the same process in a similar unit.  She is given more leave and the accommodation and food are a major improvement on the acute admission unit.   Never got to have leave as she has now been transferred back to Boston today 05.08.2023.

The major problem is the loss of the NR status which means they do not have to communicate with you regarding Elizabeth’s care.  This is unacceptable as a carer you should be communicated with. The MHA 1983 negates the medical provisions of any POA so you cannot invoke that.  To recover the NR status  would require a challenge to ******* again.  It is exceedingly unlikely that would succeed. That is because the whole court process should be open, transparent and honest.  This is public money and Elizabeth like myself want this to be made public. I have therefore requested that this is done. There needs to be accountability in evidence.

On Saturday, 1 July 2023 at 18:32:04 BST, susan bevis <susanb255@outlook.com> wrote:

DR MEMON CALLED FROM CYGNET –  HE SEEMED VERY NICE AND SEEMED TO GENUINELY LISTEN.  HE WAS INTERESTED IN SEEING THE PRIVATE MRI SCAN RESULTS I HAD DONE ON ELIZABETH BUT I SAID I NEEDED HIS EMAIL ADDRESS TO SEND THIS AND OTHER INFORMATION.  STILL WAITING FOR THIS ON 10 JULY 2023.  I MENTIONED TO DR MEMON THAT NOW ELIZABETH WAS A LONG DISTANCE AWAY FROM HOME AND AT LEAST 3.5 HOURS JOURNEY AND I ASKED HIM WHAT FLEXIBILITY COULD BE OFFERED IN TERMS OF VISITING HOURS.  I MENTIONED THAT ELIZABETH DID NOT HAVE HER PHONE AND WE HAD NO CONTACT AND HOW AWKWARD IT WAS TO KEEP IN CONTACT NOW AS I WAS USING WHATSAPP TO MAKE CALLS AND SEND PHOTOGRAPHS OF HER CAT.

THURSDAY 6^TH July  CALL AND VOICE MAIL MESSAGE FROM KEELEY, WARD MANAGER OF CYGNET APPLETREE AT 18.07

MONDAY 10.07.2023     16.14

Received a voicemail message from Elizabeth – first time I have heard from her since moving to Cygnet Durham on 28 June.  

At 16.15 just had the phone put down on me by a member of staff at Cygnet who refused to give her name and said she would pass my call on to her manager.  The Manager of the ward is namely Keeley.   Elizabeth did not sound good on the phone at all and sounded quite distressed.

“Hi mum it’s me Elizabeth I’m not having a good day” please can you call me back on the ward.   She then gave me the number of the ward which is 0191 378 2747”  Now waiting for the ward manager to ring me back that is if I ever get to hear from her.   Time is 16.21    MONDAY       10.07.2023.

I had initially complained about the problems getting through on the phone. Here is the response I received:

Our ref: ENQ1-16584485228

Susan Bevis

Via email: susanb255

25^th July 2023

Dear Mrs. Bevis

Re: Service manager’s review of complaint dated 25^th July 2023

I would once again like to thank you for bringing your concerns to my attention. The investigating officer has looked into the concerns that you have raised and has shared the outcome of their investigation with me. iNCORRECTLY

I have considered the findings from the investigation and I set out below my response to each of the points that you have raised. You have told us that:

You are the mother of vulnerable 36 years old daughter, and 4-5weeks ago she was moved to new service Cygnet Appletree and daughter is under section 3. Caller stated she is autistic and cannot stand the noise and has been moved hundreds of miles away from family so you stated this is Article 8 of human rights breached. Not quite! I stated her phone had been taken away/that we could not get through on the phone. That is what I meant as being in breach of Art 8 HRA.

I have spoken to Dr Memon who confirmed that he had been in discussion with you regarding the care and treatment of your daughter. I will confirm what he has informed me by providing extracts from his email.

I have spoken to Susan Bevis mother of EB on 6^th of July and had a lengthy discussion around EB, reason of her admission to us and explained how we work and provide care to her daughter. I reassured her that we will try our best to provide best care possible to EB. We have recognized that the ward which is PICU can be noisy and we have continued to liaise with EB’s home team to repatriate her back to her home area as soon as our assessment completed. Since her admission, we have had meeting with her home team as well as home team attended ward round every week in order to get update EB’s progress.

For the past two weeks we were clear in our conversation that she can be transferred back to her home area whenever bed is available because of her being sensitive to noises and her being settled with her mental health,. We received an update from home team that she may be return back to her home area next week but it depends upon local bed availability. I tried to contact her mum on 14^th of July 2023 but call went on to voice mail and message was left to contact me. To sum up we already recognized and started liaising to her home team to transfer her back to nearby home area.

While we were waiting to hear from her home team around her transfer back to nearby home area, EB has been given section 17 leave to spend time outside the hospital and small radio as well as ear defenders have been given in order to reduce level of noise and has been given opportunities to involved in ward base activities. During the ward round on last Tuesday team discuss this with EB and she was very happy and appreciated the care she is receiving from Appletree.

Having taken into consideration the comments of Dr Memon I cannot uphold this part of your complaint. There was only one thing and that was being able to get through on her phone but now I have other much more serious concerns.

Second concerns around Phone: No it was about the phone and contact difficulties I complained about.

I have been informed and discussed in our multidisciplinary meeting that EB’s phone was removed because her calling to emergency services inappropriately and it was causing distress to Elizabeth, which can impact on her mental health. No again she was distressed on being so far away from home in a strange environment and she called police in desperation. She claims to be autistic and has sensory issues. It was her transfer and trauma of being transferred that led her to call police.

Following detailed discussion in the multidisciplinary meeting, the outcome was to commence two supervised periods of using phone within 24 hours till she becomes more settled. It was observed and noted that EB was using phone appropriately during twice supervised period and did not show any distress, therefore phone was return back to her on 14^th of July 2023 without any concerns.  I have personally spoken to Elizabeth and she was ok with it. Elizabeth had no say in anything. We were not happy as we pay a contract on the phone. She is no better and you have not provided any psychological input which is atrocious same with Ash Villa.

I am satisfied that no member of staff is preventing Elizabeth from calling you and therefore I cannot uphold this part of your complaint. When I called as I have accurately noted, it took several people before finally reaching the manager and this had nothing to do with confidentiality as we pay for a phone contract.

I appreciate you taking the time and effort to raise your concerns. Concerns raised

provide us with an opportunity to look at the care and treatment that we provide

and to learn lessons.

Whilst I am unable to uphold the issues that you have raised, I do accept

that they are valid concerns from your perspective. I hope that my responses

reassure you that I have given serious consideration to the matters that you have

brought to my attention. Nope I am not satisfied – eventually she got her phone back but it was distressing not being able to get through and having no contact.

If you have any concerns arising from the above, Dr Memon or Keeley Syed, Ward Manager, would be happy to discuss these with you. Alternatively, should you be dissatisfied with the response that I have provided the next stage in Cygnet’s complaints procedure is to request an Operations Director’s review. The Operations Director for Cygnet Appletree is Mrs. Frances Bergin. Cygnet Hospital Appletree. Frederick Street North. Meadowfield. Durham DH7. I shall be writing about wanting to know how many times my daughter was rapidly tranquilised as I know that this was being done very frequently as I had been keeping records of what Elizabeth told me. Also I wish for her new shoes that went missing to be replaced and so I will be sending you the receipt for reimbursement.

Should you request an Operations Director review please set out clearly the elements that you are dissatisfied with and the reasons why. Yes I had further concerns of an even more disturbing nature and requested to know how many times had Elizabeth been rapidly tranquilised following frequent moments of inconsolable distress? I am waiting to hear this.

Thank you for taking the time to make us aware of your experiences. Our experience has been appalling because it was most distressing not to be able to get through.

Yours sincerely,

Martin Graham

Hospital Director

Cygnet Hospital Appletree

This is the kind of thing I have heard numerous occasions “lessons learnt” Nothing is ever learnt so it would seem.

TRANSFER TO WARD 12 PILGRIM HOSPITAL BOSTON 05.08.2023

No-one in the family had been notified but this evening I got a call from Elizabeth to say she had been transferred to mixed ward Ward 12 at Pilgrim Hospital. I was far from happy as no-one informed us. Also this ward is highly unsuitable because it is a mixed ward and another dormitory ward completely and uttlerly wrong! She is now 1 hour’s journey away and now back under NHS “care” of Lincolnshire Partnership Trust. I am assuming they (LPFT) not Enfield are now funding hospital care in this area as previously Ash Villa was paid for by Enfield. No wonder why I was cut out of all the meetings etc. I bet the ward and facilities are nothing compared to private sector Cygnet that had ensuite to every bedroom. Surely that should be the basic requirement for any MH ward. A dormitory accommodation had previously proved to be totally unsuitable as per Charlesworth Ward.where Elizabeth tried to gouge her eyes out in distress because of the noise and had to be put in a side ward. However there is a patient occupying the side ward because of possible covid. It is also a mixed ward which will be quite teryfying

If you weigh up the risks Elizabeth would be better off at home. The annex has been built now. Nothing I can do right now but any changes and unfamiliar surroundings is like hell on earth for my daughter who now has frequent bouts of “inconsolable distress” and all thanks to her appalling treatment under LINCOLNSHIRE PARTNERSHIP TRUST. We moved to try to provide the right environment. We overlook the sea and beach. The area is beautiful and the people friendly. I am heartbroken that LINCOLNSHIre PARTNERSHIP PARTNERSHIP TRUST AND COUNCIL have treated us like objects and have failed in every way. The facilities are totally wrong for Elizabeth. A care farm or Camphill Community Trust would have been better. She has had food and water snatched and been subject to frequent rapid tranquilisation. When is this ever going to end. It is like a never-ending nightmare. Staff do not understand how to communicate with my daughter and choose to ignore her constant statements that she is autistic.

They have also failed to properly assess her for her physical health denying referrals to an endocrinologist but now I have the genetic tests which I managed to find. I now would like referrals to an immunologist/geneticist. I have had to pay privately for the MRI scan as this was being denied to her. Her discharge note states ONLY PHYSICAL “ABNORMAL FINDINGS ON SCAN POINTING TO CNS. WELL NOW I WANT TO KNOW WHAT THAT MEANS EXACTLY.

“It seems odd that after all this time that no progress has been made at all in Elizabeth’s recovery. My initial presumption is that she ‘s been medicated with drugs that she is treatment refractive to.  We have discussed this on many occasions.  If she cannot metabolise the drug it will not ameliorate her condition.

It seems we have gone back in time to the Victorian asylum model where Ash Villa is concerned.  

It is a terrible shame that some still want to lock patients away and throw away the key after all the progress that was made.  Some patients had been stuck on wards for years but it was amazing how rapidly they recovered with support in the community, some had jobs and looked after their own budgets and appointments. Presumably it is to do with the control of the aftercare.  They want to either discharge EB to sheltered accommodation or send her there on extended s.17 leave

EB is being kept for a ridiculous length of time on an acute ward.  That is now encroaching on the human rights issues, unwarranted deprivation of liberty, Art. 5 ECHR, in excess of what is necessary for safety and treatment, violation of Art. 8 family and privacy rights and of course the abject paranoia that has been directed towards Susan’s blog, Art 10 ECHR.

In the community the tests can easily be arranged.  Endocrine function is the province of immunologists and the limbic system the job of the neurologist.  A GP referral will of course be needed.

Ash Villa is a shambles and LCC and LPFT are struggling not very effectively to hide that.  The treatment of eLIZABETH is incompetent and the over zealous use of PRN and seclusion a human rights violation.  That is what they want whacking with.

The failure to carry out a proper capacity assessment and the refusal to properly investigate potential medical conditions interfering with the treatment is staggeringly unprofessional.  If EB has an endocrine disorder and she almost certainly does.  If she had inflammatory disorders they would interfere with the drug metabolism.  We already know she is a poor metaboliser but they continued nonetheless to treat her with medication that almost certainly would not work.  This should be thoroughly investigated and I suspect they do not want an NR that might insist on it.  

It is not ‘low dosage’ or ‘high dosage’, it is minimum therapeutic dosage.

The test is serum concentration and not daily/weekly/monthly dosage.

Maximum doses or anything like them are never justified.  If a patient is not responding within the therapeutic band it is extremely likely that they are poor or non-metabolisers. 

They are NOT treatment refractive.  A disgraceful attempt at making this a medical definition when it is a pharmacological one. 

If a patient is a poor metaboliser increasing the oral or parental dose will make no difference.  This is all to do with CYP450 cytochrome’s.

What I find absolutely staggering is that my 21 year old third year students understand this quite clearly while many 50 year old psychiatrists have not got a bloody clue. ”