It is 5.39 am and I like other parents/carers who have a son/daughter trapped in a system that fails consistently to provide the right solution are tortured by the fact that no-one cares to listen.
There is a glimmer of hope that my daughter who, not only is Autistic but said to have some learning disability, may be treated favourably by a CTR Review panel but if she is not I will continue to turn to social media and be outspoken in continuing to write about her treatment as the word “independent” means nothing to me whatsoever.
In all these years, I knew nothing about CTRs. It has been worth me going on to social media, being outspoken and coming into contact with other parents who, instead of organisations supposed to advise, have given me the most help and greatest advice I could ever wish for.
Tribunal after Tribunal after Tribunal (closed secret courts) I have called for openness and transparency into the secret courts that taxpayers fund and have written to the President of the Courts & Tribunal service recently.
A vulnerable person right now due to Covid is spared the ordeal of facing a panel in front of her firing questions, however this is now carried out on line and it is a great ordeal to have to listen to comments by professionals who fail to liaise with the family and get a true and accurate picture of everything and so their reports are highly inaccurate, written purposely to fail a tribunal. We have seen this time and time again. A panel consists of a Judge, a lay person and an independent doctor and then sometimes another independent Dr can be appointed to prepare a report by the vulnerable person’s solicitors. The current system is tremendously flawed. Tribunals are often conducted unfairly and do not take into account the full picture. When Doctor after Doctor writes in the most biased and negative terms who is a tribunal going to believe? The last person is the parent and carer of the vulnerable person who is of great value to providers of private facilities who wish to hold on to them as they are getting paid a fortune when a patient is sent out of area away far away from home and family due to failure of the local area (in this case is ENFIELD) to provide anything appropriate which includes decent facility or provide humane care and treatment.
Here are my ratings of everything that has been provided so far:
Bethlem Royal Hospital National Psychosis Unit:
A facility where vulnerable people who are treatment resistant are sent from all over the Country, hence few visitors because many parents cannot visit if too far away. The vulnerable person is therefore more vulnerable than ever and prescribed drugs, which in Elizabeth’s case are beyond BNF levels in fact according to the files 2 x bnf level. I have also heard reports of one case where a patient was bribed with money to try a drug so there is much experimentation going on in this institution that had a museum in the grounds. This raises lots of questions – why do Doctors prescribe at 2 x bnf levels? Why do they favour Clozapine when this is a highly dangerous drug? Why was there no ECG machines working when Elizabeth was gravely ill and emergency doctors were called out? – the extremely low mews score suggested “critical”. Why was I suddenly denied visiting rights to my daughter? Why was suddenly she denied outside leave? – well I can answer the two latter questions myself. Why was they had put her on Clozapine against her advance declaration. “its all about Clozapine here you should have done your research” so I was told. They deprived freedom and deprived visiting and failed to provide a visitor’s room when I turned up with Elizabeth’s cat yet they allowed a visit by a man who turned up drunk and bringing alcohol onto the ward and was escorted off the ward drunk.
My rating 0 out of 10 for this so called renowned facility.
Cambian St Teilo House S.Wales 1 out of 10
Set in a beautiful scenic area of S. Wales I naively hoped that in Wales the care would be better. My daughter’s first reaction was “Mum it is lovely here – there are sheep outside my window. Whoever thought of such wonderful care. However, these thoughts disappeared the longer she spent in this facility, the less hope. The Psychiatrist, also a GP, so I was told tried to influence Elizabeth against myself as a mother. Dr AW was advising she concentrated on the rest of the family according to Elizabeth’s sister. This meant that I as a mother was not given the same visiting rights as the rest of the family, being her father and grandparents. This also meant that the Doctor who had all the power could stop phone calls and dictate that there should only be supervised phone calls at a time when her mother could not ring. Thank God I had solicitors appointed as NR at the time. Working together they sought to displace me as NR which they failed to do at the Bethlem because whilst work court papers were forwarded on my work computer and I was bullied into accepting a S3 which I as NR did not agree with. They had achieved what they set out to – putting her on Clozapine but now they wanted to cut a mother out and displace her with her father and this is how they destroy and damage a family. My local area were involved and Todd and Co Solicitors were appointed by me to investigate and all investigations led back to ENFIELD COMMUNITY REHAB TEAM.
I would give a rating of 1 out of 10 for this facility as Elizabeth was at least surrounded by a nice area but at Xmas she was refused leave to come home as she was deemed to be supposedly too ill but yet a visit was permitted just prior to Xmas and flanked by two nurses they brought her home for just a few hours. The nurses who brought her down for a family visit were ordered not to leave in my case yet I have the files to prove that more leave was granted to the rest of the family who, whilst concerned about the decline of Elizabeth on contra indicated drugs of Clozapine/Metformine, never complained and so this is why they got greater benefits of leave by Dr AW who suddenly disappeared into thin air after maternity leave and following my phone call with Mr Asaria from Head Office based up the road from where I worked in Fulham Reach. By the way I found out that Metformine should only be prescribed by an Endocrinologist off label. I challenged Section 3 with a brilliant report written by Dr Bob Johnson who deserves the highest award for his honesty and achievements “complex PTSD requiring intensive trauma therapy” was the diagnosis which was given by him and we thoroughly agree after reading the files and noting all the serious incidents that have occurred under care.
Phoenix House Stepping Stones care home Northampton
A care home who at first were very nice and accommodating and allowed visits/leave but Elizabeth was quite ill and suffered severe anxiety and panic attacks leading to great concern. Rated “good” by CQC this care home was far from good. I requested home leave and Elizabeth sat in the garden with a winter’s coat on – her hands were like blocks of ice yet it was a hot sunny day. I became concerned for her physical health and wellbeing, especially because she did not seem to be happy. She later told me that she had been asked to choose who was the next of kin which she did not think was fair – to have to choose between her Mum and Dad and that is cruel abuse by so called professionals who must have been Registered MH nurses to have been allowed to work in this facility. Funded by my local area of Enfield, this care home was meant for life and it became clear that all of a sudden the leave first granted was not something they wished to continue, or contact. My instincts were proven correct when I eventually obtained the files. They realised that Elizabeth had been discharged not on a CTO and by stating who do you want as next of kin they really meant NR as their intention was to place Elizabeth on CTO and I was told “we are not speaking to you – you are not the next of kin Mr Bevis is”. They gave the game away and I immediately knew what they were up to. When Elizabeth came home and complained that she was being put under pressure to choose between Mum and Dad I asked if she was happy at the care home to which she replied “no”. I then asked if she would like to stay at home to which she replied “yes” so I said she could stay at home. Then followed the most bullying I have ever in my life encountered and after 4 days deprival of Clozapine (FOUR DAYS NOT TWO AS I KEPT A DIARY) hence my story of “Get Her Back We are Paying for That” which is about out treatment at the time when I tried everything to get the Clozapine when no doctors, no chemists would help in Enfield and a case of “Deprival of Medication – Community Care” Irwin Mitchell. When I refused to return her to the care home though offered to go and collect the drug, this resulted in CoP action brought about by social services who even tried to stop contact. I would like to praise highly the CoP who did not see in our favour otherwise Elizabeth would have been returned to a care home where she had no food at the weekend as documented in the files. My rating 0 out of 10 is because her life was put at risk by staff who are would you believe RMN’s “it is more than my job is worth to give you the drug” – the response to my asking if I could collect it in person.
A facility that looks like a prison and has a caged garden. Elizabeth’s carer was banned from visiting. Elizabeth was doing ok off all medication until they introduced Aripiprazole. I was so concerned that this was a facility that could have lasted years on end and where Elizabeth could become hopelessly trapped. The visits were not restricted to the point of other similar facilities with staff listening to every single word. But possessions were restricted and you were searched on arrival and had to wear alarms round your necks. We were at least allowed the dignity of a visitor’s room on the ward itself without a member of staff sitting there taking notes and the Section 2 did not increase to a Section 3 thankfully and Elizabeth was discharged back home. My main criticism is that they raised the drug Aripiprazole to double, making her unstable prior to being released back home. 2 out of ten is my mark as at least they let her go and we were allowed to visit without a member of staff standing over us.
Mays Cottage – care provided by Craegmoor part of the Priory Group. A house where Elizabeth was placed after an incident at home and following a two week stay at Premier Inn Enfield Island Village where Elizabeth was moved from room to room because of the fact no funding was put in place and the family had to pay to top up so Elizbeth could remain there. The Police Dr halved the drug Aripiprazole. Social services based at Park Ave came up with a permanent residence – a house occupied by a drug dealer who supplied Cannabis. Imagine staff arriving for work in the morning to the smell of Cannabis. Care was provided during the day only and there was a faulty lock due to shoddy repair work meaning Elizabeth was put at risk by their request for her to sleep on the settee until staff arrived in the morning. Safeguarding was carrying on against myself behind my back until luckily I found 2 copies of the minutes on the floor and I won the case because both Trust and Council were found to be in breach of their own Code of Conduct as Elizabeth had no advocate present and were forced to apologise by the Ombudsman – to think 9 professionals (3 from Craegmoor – part of the Priory Group ) sitting round a table inc. the GP with a Police minute taker and Elizabeth was unrepresented. I had no choice but to report everything to the Police myself.
2 out of 10 is my score.
Cygnet Beckton – supposed to be the Flagship of all Cygnets but we were never allowed a visit on the ward itself and given a tiny visitor’s room where a member of staff sat outside making notes after notes. Luckily the section did not go beyond section 2.
I would give 3 out of ten for this as I think looking back at least the RC did not raise the drugs too high and listened re the P450 liver enzyme test results “poor/non metaboliser”.
Trent Ward Edgware – I would give 4 out of 10 as they listened re the P450 Liver Enzyme test results and allowed Elizabeth to go out in the local area without being escorted.
Reservoir House Oakwood – a new permanent residence with no key ever provided – a form of Dol because if Elizabeth stayed out too late there would be noone to let her in as staff would be asleep. Also no furniture just a room where Elizabeth’s possessions was kept in bin liners. A persisting bed bug problem led to be contacting health and safety inspectors which led to her eviction thank God. A Death Plan had been made cutting out her family and for this reason I would give them 0 out of 10. The Death Plan asked how she would like to be buried or cremated and what music would she like played at her funeral. It was disgusting that Elizabeth had been given this to complete without any advocate present or consideration to her family. BY THE WAY ELIZABETH SAID SHE WANTS TO BE RESUSCITATED.
Huntercombe Roehampton (PICU) – sent Out of Area Dr HM of Suffolk Ward 3 out of ten – highly inaccurate report with not even date of birth correct failure to provide leading to ICO having to force them to provide as was needed for court purposes.
This facility I would rate low as Elizabeth was so drugged up she spent most of her time asleep and they drugged her on drugs previously found to be allergic to ie Risperidone. Her eyes were like slits and she had to lay down when I visited. Visiting was by appointment but at least unrestricted and more dignified but the drugging was the most I had seen apart from at Bethlam (BEDLAM). Nevertheless I would give them 3 out of ten for telling Elizabeth she had Aspergers and to have received that call whilst at work made me so happy as Elizabeth was happy.
In a short space of time spanning from June to date Elizabeth has been sent to three PICUS and held in seclusion by Chase Farm Hospital for up to 4 days at a time. Starting with:
Seclusion by Chase Farm Enfield
Ruby Ward St Pancreas Hospital – 0 out of ten.
The RC did not want me involved in any ward round and injected Elizabeth with a drug he knew to be allergic to – the equivalent of Risperidon Dr NS was RC
Seclusion by Chase Farm Enfield again
Cygnet Godden Green – 0 out of ten
“Requires Improvement” – virtually no contact for a long while – later found out phone broken but not advised. Only 1 person who communicated well. Depot injections continued despite RC RS knowing they were contra indicated and prev found allergic to.
Report writing the worst I have ever seen apart from Huntercombe where not even date of birth correct
Bullying the worst I have ever had with their solicitors threatening me and Police contacted when I dared to complain about their report writing geared to failing the tribunal.
After my blog a visit was accommodated and three hours leave granted for Elizabeth to come out unescorted.
I would praise Tom Higa for communicating nicely with me.
I would also state that Cygnet compensated for the broken phone.
5 weeks of restrictive 1 -1 15 minute watch care
My daughter’s comments “I will never get better in here”
Seclusion by Chase Farm yet again
Elysium Healthcare Thatcham Berkshire – My rating is pending whether they carry out a proper Assessment into Autism and if as I understood this was something they could not do then this would need referral to experts in the field.
Described as cold and aloof and lacking in insight with thought insertion by the RC Dr DM I do not have much good to say except this is the most restrictive care I have every come across. Also little understanding of Elizabeth as family excluded so far.
After quite a few weeks of incarceration, the only leave permitted is escorted with staff listening and writing down every word which is absolutely dreadful. I am not sure if garden leave is escorted too but know that Elizabeth is not taking the garden leave but stuck indoors and this is worrying as after spending much time like this at Cambian she suffered from Agoraphobia.
Whilst visiting has been allowed in their Board room off the ward itself, the visiting has been degrading as there is no dignity with staff listening to every single word.
Garden leave not granted despite being promised resulting in more degrading treatment to her family who have little contact but at least here unlike Cygnet Godden Green she is allowed her phone. Having said this reception is terrible and I do not like speaking on their phone and just lately the phone is constantly in the office charging which means it is difficult to get through to her. Elizabeth is getting no exercise which prompted me to complain and yet they have a gym facility.
She is getting no fresh air hardly and rarely goes out only allowed garden leave.
Not once have I or any family members had any feedback or been included in a ward round. You are treated like nothing. It is like you do not exist.
Not all staff have been polite. Phone put down on me a couple of days before.
An important report labels Elizabeth as cold and aloof. Elizabeth is missing animals and has adopted a pet spider she found in a cupboard. She talks often of the pigeons she misses in her flats.
I would describe this facility provided by Enfield CCG as the ultimate prison and the Doctor in charge has further labelled Elizabeth’s character as cold and aloof and that is because he chooses to ignore her family going by a doctor’s report from the local Ward Suffolk who lacks insight and failed to engage with family throughout sending her from one PICU to another, all of which have failed to provide anything of the right kind of environment she needs to be in to fee; well ie, fresh air, to be amongst animals.
I wish Elizabeth had never come back to Enfield. If I had never seen her again I would be happy knowing she was free rather than be incarcerated in a prison environment . Now as it stands we hardly see her anyway and when we do it is so very degrading.
So this is another private hospital, Elysium that costs around £700 per night and the RC does not recommend anything other than restricted incarceration yet cannot provide even a proper assessment whilst they desperately try to stick with the label Schizophrenia that we do not agree with.
My rating is also low for this reason that they cannot/have not provided an assessment on autism yet admit autism traits. There is so much conflict of opinion by other professionals and none of us in the family can accept this as an excuse and if a facility cannot assess they that assessment needs or rather should be done externally/independently as after all there is huge conflict of interest when facilities such as this are “guided” by the local area and it is after all being paid for by the local area. So therefore such hospitals back the local area in everything including treatment/labelling which is far from satisfactory and I am broadcasting this because this is how patients die when doctors do not listen and ignore the drugs charts.
Forced Paliperidone depot injections given and even more worrying attempts to add procyclidine for Parkinsons Disease but Elizabeth refused it. I believe this is given to hide the effects of the drug Paliperidone that can result in tardive dyskinesia and of course am aware that if a patient displays signs of tardive dyskinesia then the drug should be stopped. I obtain advice from leading professors on the drugs and that is how I have become knowledgeable and able to question what they are doing and why but some doctors when questioned look to the floor. It is as though they know what they are doing is wrong.
There is no way we as a family can accept this label as it hides the fact that in one local facility – supported housing – Elizabeth was terribly abused and has never got over it.
Xmas 2019 Elizabeth applied to Integrated Learning Disability and asked for my help in her application to them as she got nowhere every time she visited they had no record of her application. When finally the form was submitted a Dr HK refused to even see her stating her needs were being met by the MH team. This was far from true.
The majority of professionals have no idea how to communicate with someone who has autism/LD. Elizabeth wanted to be with a team who could communicate with her effectively, who understood her. Another reason why such facilities as PICU/acute wards are unsuitable is that they are very noisy and Elizabeth has sensory issues that make such noise unbearable.
It is a post code lottery and I have not come across people apart from a couple examples of support workers at a previous scheme who possess the unique communication skills but if everyone possessed such skills like Baroness Hollins then I would not be writing this blog and giving my ratings of facilities that one after the other have failed to provide both correct environment or tackled the underlying trauma which has been increased when someone is sent away from home and family time and time again and placed in such restrictive facilities where punishment is forced injections and seclusions and sanctions placed by doctors (who even admit a PICU is wrong environment) who have no understanding and do not wish to properly assess as it is more convenient to them to continue with current treatment and of course they do not wish to appear to be negligent which they are.
Until the court service/system of law is changed in the UK people like my daughter will continue to face lengthy incarceration leading to more and more desperate parents being outspoken on social media and facing in some cases bullying and threats like I have encountered. Tribunals and secret courts need to be open and transparent in my opinion and I have requested this to be looked into.