Today myself and another family member visited Elizabeth on Suffolk Ward, Chase Farm Hospital Enfield for a meeting where we hoped to meet new RC Dr Matthew Liveras.
I have concerns with Elizabeth being on this acute ward as she is not getting the right care for PTSD (SHOULD BE EMDR OR PSYCHOTHERAPY). When she was discharged none of the underlying issues were dealt with and it costs a lot to keep her on an acute ward when it is not helping her. I wonder how much the scheme plus hospital is costing but I already know that acute wards on average cost at least £900 per night.
Suffolk Ward seems to have quietened down since last time but this is no place for Elizabeth to get well and Dr Joseph Anyaoh had to admit this himself it was not the right place for her. To be cooped up on the ward when it is nice weather outside is not good at all. It has been two weeks now and Elizabeth has not been allowed out and we hoped she would be in order that she could accompany us to the café in hospital grounds but this was not allowed as the new Responsible Clinician, Dr Matthew Liveras did not bother to come to the meeting. Present at the meeting was new Psychiatrist Dr Joseph Anyaoha, Psychologist Dr Muckherjee and ward manager Kirk Hopwell.
I am not happy as tomorrow is the last date for appeal against Section 2. I as Nearest Relative had specially informed Elizabeth about this that she had fourteen days to appeal. Unknown to Elizabeth she has now been deprived of this chance of appeal as someone by the name of Mia from Suffolk Ward had telephoned Elizabeth’s solicitors (unknown to her or any of us) and now the solicitors are not coming as they had wrongly assumed after being told by Mia that Elizabeth no longer wanted to go ahead. This is not true! The response I got from the ward was “are they on our list?”. So what if they are not – it is even better in my opinion if these solicitors were not on the hospital’s list. As Nearest Relative I wanted this section released and for Elizabeth to be allowed out to get plenty of fresh air. Even whilst at Edgware she was allowed out in the grounds but now she is not being treated well in my opinion. Elizabeth told me that she was visited by a psychiatrist on the ward recently who tried to persuade her to not go ahead with the appeal – this is all very wrong I am sure you will agree.
I could feel awkward response when I brought up the subject of the appeal as I expect they all knew that her appeal was prevented from going ahead. Elizabeth had not cancelled the appointment herself- it was not her wish to do so. If she had changed her mind in the presence of the solicitor then this would have been fair. This is an example where the system is not fit for purpose as it is easy for professionals to interfere. On other occasions, solicitors appointed by hospitals have done nothing and never bothered to visit her – “lack of representation” – money from public funds at tribunal level is very profitable for solicitors as tribunals can be long and drawn out. If you attend a higher court/Court of Protection there is no legal aid funding and if you as a carer need legal support then you have to pay privately for this.
Today on this lovely sunny day we hoped Elizabeth could accompany us to the café in the grounds but although those present at the meeting did not object to this, other staff refused. This reminded me of her imprisonment at the Bethlem (Bedlem). Just because Dr Liveras did not bother to come along to the meeting I was disappointed and saddened by what happened.
The only good thing was that Dr Muckherjee (Psychologist) did not do what most professionals have tried to do and that is not budge on the diagnosis of “paranoid Schizophrenia” – suddenly “chronic treatment resistant” has been dropped but I doubt whether Elizabeth has been given her care plan even. Dr Muckherjee did not deny that she had learning disability and complex PTSD. It is crystal clear that Elizabeth has been misdiagnosed and for many years has had the wrong treatment – enormous amounts of mind altering drugs without thought for her physical health. I have told them all that every test should be done on her physical health, including the latest research on antibodies by Professor Belinda Lennox that I previously requested. It was agreed by most that the acute ward was the wrong place but I am extremely unhappy that Elizabeth has been deprived chance of appeal. The discussion then turned to medication and to these doctors they all think this is the right course of action but according to NICE Guidelines “DO NOT USE ANTIPSYCHOTIC MEDICATION FOR THE MANAGEMENT OF CORE SYMPTOMS OF AUTISM IN ADULTS.” IT ALSO SAYS “DISCONTINUE IF THERE IS NO INDICATION OF A CLINICALLY IMPORTANT RESPONSE AT SIX WEEKS” – so why on earth don’t doctors abide by the manufacturers instructions that quite often says no more than 12 weeks but this can go on for years and years and no help is given to come off the drugs. In addition it does not say that for the condition of complex PTSD under NICE Guidelines that antipsychotics should be given. When someone has suffered extensive abuse under care itself such as Elizabeth they are bound to suffer from trauma which requires specialised care like EMDR AND PSYCHOTHERAPY and I do not see this condition as “illness”. This cannot be “cured” by any amount of drugs. Drugs cannot erase the suffering that a trauma victim has experienced. No drugs were forced upon Elizabeth when professionals took her away for four months wonderful care. For once she had proper care. I am therefore upset she is being treated like a prisoner in favour of sending her somewhere where they have beautiful grounds like the The Retreat in York so that they can properly help her with underlying issues during a one year programme.
A small scheme in the community would not have the facility or expertise. Elizabeth also has not benefitted from prison like institutions such as Cygnet and Cambian. She came out suffering from agoraphobia. The longer she is held at this acute ward the more difficult it will be to rehabilitate her but I continue to fight for decent care in the UK as there are few facilities where they really specialist in the condition of PTSD and this requires specialist funding. Again you need consent – it does not matter if you have power of attorney as far as healthcare is concerned this apparently counts for nothing yet I did a survey the other day and in the survey I was asked if I had experienced any difficulties in using the Power of Attorney so I responded “yes” in respect of healthcare. but I got the impression that I would have the power to make appointments etc so all this getting consent is what is played upon to protect and not to benefit Elizabeth who has granted permission not just to me to help with certain things. When Elizabeth came home from Australia she was making all her own appointments and dealing with everything herself. It is wrong when vulnerable person does not have an advocate at appointments/meetings. The safeguarding is the most disturbing thing of all as anything can be said and twisted behind your back whilst nine professionals sit around the table.
It would like everyone to hear what is mentioned under Safeguarding minutes as though coming from Elizabeth who is alleged to say “clozapine was found to be helpful“. THIS IS NOT TRUE AT ALL – SO I WOULD LIKE TO KNOW WHO WROTE THOSE COMMENTS THEN TEAM? When I showed this to Elizabeth she denied saying those comments and I would like to confirm that …… ELIZABETH DOES NOT WANT TO GO BACK ON THAT TALC AND ASPARTAME CHEMICAL CALLED CLOZAPINE AS SHE HAD A SERIOUS REACTION ON THIS DRUG. YOU MIGHT AS WELL ALSO KNOW THAT ELIZABETH DOES NOT WANT ECT EITHER AS THIS WILL DESTROY HER HAPPY MEMORIES OF THE DECENT CARE THAT WE PROVIDED.
It is difficult to get the CQC or PHSO involved in investigations even if you have proof someone’s life has been put at risk twice. It seems like cost considerations play a huge part but when they do not take action this can lead to abuse and serious cover ups. Someone could die as a result of lack of accountability. What if the vulnerable person is put under pressure by team not to proceed. This is all wrong in my opinion. The system is rife with bullying.
At the end of the meeting we requested if Elizabeth could come out with us for just a short walk to the café but when staff noticed her coming out with us they stopped this and she was forced to remain on the ward on this beautiful sunny day. We sent Elizabeth round the world to get well and to enjoy her freedom as the care system in the UK is completely rotten and rife with abuse.
Suffolk Ward may not be THE most restrictive MH ward it is disturbing what goes on – there are far worse, some of where you are not even allowed your possessions like Cygnet – MH patients are treated like objects and stripped of their rights and I am very upset by the fact so many of have suffered extensive abuse themselves and then they get treated in an abusive manner under the system of care in the UK. Their basic rights should be fairness under the MHA but this is being abused.
I explained to the meeting that Elizabeth does not need any more drugs which she cant even metabolise. At the most the odd lorazepam could be acceptable but not too many. They do not understand about withdrawal neither are they experts in physical health problems which I have proven Elizabeth has such as endocrinal disorders and how this makes someone feel. The drugs are not recommended for PTSD under NICE Guidelines to PTSD sufferers. Elizabeth has given consent to her family to help in any way they can. I could not care less if the team turned to anyone of those listed to help regarding consent as long as she is treated fairly.
It is important to challenge things like this when a vulnerable person is prevented under the MHA against the appeal of section and does not even know that the visit by her solicitor has been cancelled by Mia.
The complaints system should be changed so there is accountability.
It is hard to sit through these meetings and feel happy when you look back at so many past years of extreme over-drugging on the local wards by various psychiatrists (not one of those doctors questioning the diagnosis when there are several in the files) they don’t seem to care what harm they are causing to the patient. When you ask Elizabeth a question she now takes a long time now to respond and cannot process too much information. She has been injured by her treatment. She needs a quiet and relaxing environment not one where another team in the community expect her to immediately join in all activities and attend yet more meetings after the shocking experience of safeguarding. If they were to provide the music therapy, the art therapy the aromatherapy that would be great as advertised in the brochure of the scheme.
The good parts of the scheme are location/nice house/nice support worker. It is so essential that Elizabeth has familiar support workers but if they cannot understand her then they cannot deal with her distress positively which is no good.
If she is to be placed back there again then they need to leave her alone for quite some time without pressurising and alternative such as The Retreat applied for rather than returning back to Suffolk Ward like a revolving door case.
Elizabeth gets very tired. She cannot do too much right now as she is recovering from many years of being drugged to the hilt. She needs plenty of rest and diet is very important too.
Whilst I would like to see her settle down in the community I believe that the underlying issues are best dealt with (not in a prison environment) but at The Retreat which has a unique way of dealing with care and specialised programme and no one is pushing mind altering drugs in that particular hospital like most places as the drugs do not work in Elizabeth’s case and this is why she has had so many adverse reactions ON the drugs and because she has PTSD reaction can be triggered by events and this needs specialised attention but not in a private “prison” style hospital. I would also be happy if she was referred to the London Homeopathic Hospital as there they would pay special attention to diet and physical health. This is the right environment in my opinion.