I have seen an article dating back to 2014 through Rethink where Clinical Psychologist Kajori Mukherjee spoke at a summit which brought together NHS leaders from across England to identify problems in the system that are preventing investment in quality services for people with Schizophrenia and psychosis which was organised by Rethink.
The only intervention I have seen is drugs. These drugs can be given to a child not tried and tested as I have seen in my own family when that child has experienced trauma – it was not counselling that was on offer.
I would agree this is expensive especially private sector wards costing £12500 per week that are quick to prescribe drugs and not to assess someone properly so in actual fact a complete waste of money so I have seen.
NHS in-patient ward is also not therapeutic – there is much improvement that could be made to the wards – no safes working and Elizabeth has had possessions stolen. Nothing to do at weekends. If there are very disturbed patients then the atmosphere can be volatile and noisy and threatening – not the right place for trauma victims or for anyone to get well.
“we’re absolutely committed to making sure people with mental health problems get the same standard of care as those with physical illnesses – we-re always looking for new ideas for how we can do things better and how we can use the resource we have as effectively as possible” – I would suggest turning to http://www.working-to-recovery in that case as my daughter came back well and we have never seen such improvement. There was no need to drug people, forcibly inject or give them ECT and Elizabeth was treated in a humane manner. It was discovered during her stay with MH professionals we provided privately that (just like back in 2008) it was thought Elizabeth had a learning disability not Schizophrenia for which there is no such thing in any case as I have proof of this. So all along vast sums of money have been wasted giving the wrong care of enormous quantities of mind altering drugs without thought for her physical health or correct diagnosis.
It is all very well stating about saving money in the community but if there is not the staff trained like Working to Recovery then there is no tolerance and no understanding in how to deal with that person, especially if they have a learning disability rather than a mental illness.
I would point out to Victoria Bleazard that vast sums of money are wasted under the mental health system – going to the private sector who provide similar “care” in prison like facilities costing an absolute fortune per week. I would point out that patients are being over-drugged and that leads to physical health problems instead of looking to see if there are any underlying physical health problems that may be the cause of the so called symptoms. You cannot treat a rape and abuse victim with huge quantities of drugs as these will not be effective and neither are they recommended under NICE Guidelines.
If there is a conflict of opinion by professionals this is not taken seriously and ignored. That leads to someone having a lifetime of wrong treatment. Treatment is experimentation by use of mind altering drugs that not everyone can metabolise. No endocrinal tests are given as a matter of course. Proper therapy such as EMDR/psychotherapy are not given in favour of drugging so that person is discharged into the community without having any underlying issues dealt. If they suffer from PTSD and affected by trauma then this is very bad as that person can react to triggering situations but if given the right care before discharge then that person can get well and the right care is not drugs that do not work and if someone cannot metabolise these drugs they this can result in psychosis. The drugs themselves cause psychosis.
The drugs have done nothing for Elizabeth except make her ill – a complete and utter waste of money. It has been terrible to watch Elizabeth having difficulty swallowing, choking and complaining of not being able to control her tongue, feeling dizzy, feeling constantly tired and piling of weight and also she has felt suicidal on the drugs and now they are talking about drugging again and I fear that they wish to dump her back to the same scheme as the cheapest option without any appropriate therapy by qualified staff or nice things such as music and art therapy like we provided. I am fed up with hearing about cuts to spending when I see huge amounts wasted on private sector care which is no better.
If there was a particular type of private sector care like I have identified (not owned by multi-billion dollar corporate providers all for profit) then that is a different matter and not a waste of money. I would rather Elizabeth be sent first to one of the wonderful places that I have identified who offer the right kind of care, before placement into the community after 13 weeks on acute wards where she was further traumatised.
When someone returns to the ward like a revolving door case to hospital it is a waste of money because the care in the community has failed because it is insufficient and does not offer tolerance/understanding in cases of learning disability.
When we had Elizabeth at home we have nothing in terms of support and that was the biggest saving all along.
In schemes people can go downhill if they do not eat properly. Elizabeth feels tired and just wants to be left alone – she is amongst staff instead of family but if we had been given support via the learning disability department when she came home then things might have been different. However the issues of complex PTSD had never been dealt with over 11 years and cannot be on acute wards or scheme. This is much more specialised and I think it is wrong to just immediately place someone in the community without addressing these issues (not by the use of drugs which are not recommended under NICE guidelines) but by proper therapy and why isn’t this proper therapy available in every local area as people are not getting the correct care?
Assessments Prior to Sectioning:
“if it appears the detained person may have a learning disability, every effort must be made to have that person assessed by a specialist in Learning Disability or to seek specialist advice if other services are unable to attend, unless this would lead to unacceptable delays in completing the assessment” .
Can vary from hospital to hospital but here are some comments therein:
“Occasionally such a transfer will need to take place at short notice to ensure we have enough available beds in this hospital to admit and care for acutely ill patients.” It is important that you, your family and friends understand that you may not be able to stay in hospital whilst waiting for longer term arrangements to be made. We will work closely with you and ensure you are kept fully informed.” – We as a family were only told at the last minute that Elizabeth was moving – I felt happy for her on the one hand but did not agree with their decision as I knew that underlying issues were not resolved or treated. I felt that this was not good at all and that they should have looked at the places I recommended that could have provided a year long programme that would really tackle the serious underlying issues as a result of being abused under previous care in the community.
It is also documented that : Communication and consultation with the patient, their family and carers are of prime importance in ensuring patient experiences care as a coherent and coordinated pathway. This is not my experience – it is hard to get through to people sometimes on the phone. The Responsible Clinician has never phoned me back. My daughter was not consulted that they were cancelling her solicitors to appeal on Section 2.
It has been horrible to see Elizabeth on the ward over this Bank Holiday weekend – it would have benefitted her to be able to stroll out in the grounds as she has been allowed before so I see this as punishment – total punishment by the Doctors concerned and it is all about power and control as patients are not treated as “patients” but criminals.
Transfer to community has failed as the main concern was getting her out of hospital so that a bed was available for someone else but how could a risk assessment have been done properly with due regard to health and safety when “services” were not even up and running until later on the next day.
I would conclude that I am disappointed in the procedures that have failed and will not attend tomorrow’s meeting but am sending carers to represent Elizabeth in my absence.
What I would like to see:
I would have preferred her to go on a long term programme – not more than a year at The Retreat or Khiron House or Amitola Community. If she is to return to that scheme then I would like to see her left completely alone in order that she can do things in her own time and adjust and then she will join in. It should be respected that Elizabeth still feels the physical pain from withdrawal of anti-psychotic drugs given to her over the past 11 years, none of them have worked. I would like to see her get the right kind of care but so would so many others that I am in touch with and what needs to be thought of is the kind of training given and I have proven what works with Elizabeth – a different approach needs to be taken in some cases.
I am also supposed to be speaking to The Executive Director of Patient Services tomorrow. I doubt Elizabeth has even seen her care plan. She does not have an advocate so I am providing advocates myself who are totally independent and they need to get those safes fixed as a matter of urgency.
It is not good that there is nothing to do at the weekends when if less money was spent on private sector care all of this could be provided.
THE SYSTEM IS STIGMA
Any patient requiring ‘Section 17’ permission from the Secretary of State for Prisons using Page 17 of the following guidance Section-17-leave-guidance.pdf. Of course a Psychiatric patient does not get to read the whole pdf. They are only shown Page 17 because to do so would reveal that they are part of the prison justice system viewed as mere criminals. Below I document the full and ugly truth that patients under the MH Act are not being told:
Suffolk Ward, Chase Farm Hospital Enfield:
Control and power is in the hands of the Responsible Clinician and in Elizabeth’s case this is Dr Matthew Liveras but Dr Liveras did not turn up for the meeting on Tuesday which I took a day off work to attend. Instead Dr Joseph Anyaoha attended along with Psychologist Dr Kajori Mukherjee and Ward Manager Kirk Hopwell. All admitted she was in the wrong place on the acute ward but how comes she has been stuck acute wards for as long as 13 weeks and why wasn’t she placed somewhere suitable where underlying issues could be addressed? She was discharged from hospital without having appropriate care with none of the underlying issues addressed. I had discovered prior to the meeting that somebody had cancelled Elizabeth’s chance of appeal against Section 2 and found out the name from her solicitors who were due to meet her the next day. I telephoned the MHA Office to speak to the person concerned who I was told by the manager was on leave. During the week Elizabeth was visited by a Psychiatrist who suggested she should not appeal but surely any patient has the right to appeal under the Mental Health Act? When I phoned the MHA Office the following day I was again told the person who cancelled her solicitors was not there and the manager was on leave.
Section 17 normally grants leave for up to two hours daily but this is discretionary and can be declined leaving a patient as total prisoner – there are vulnerable patients being held all over this Country right now in institutions for over 8 years, some of whom have learning disabilities. They are treated like criminals. The longer someone is incarcerated it results in the vulnerable patient displaying emotions which can lead to longer detention and doctors justifying the right to give medication forcibly under Section 3, some of this medication is unsuitable for the condition of the patient and their physical health is overlooked and their rights completely stripped. The MHA is not there to protect the vulnerable patient as I have revealed as this can be manipulated by the professionals and under private sector hospitals owned by Corporations there is a lot of profit being made by keeping patients incarcerated long term.
I have seen Elizabeth’s face covered in bruises at the Royal Bethlem Hospital Fitzmary II Ward. – a lead nurse (AC) said “I’m happy with that” but would not explain further. This is all denied by the bulk of the team – she could have been beaten, she could have hit her head in despair on the walls. Hardly any visitors to this ward where she was referred by Professor Murray for a drug free period of assessment. Immediately pressure was put on her to agree to take Clozapine which was against her wishes. Suddenly she was sectioned and her leave cut whereas she had been going out with me all day visiting the surrounding area without any problem. Suddenly Elizabeth was not well – I would get the most distressing calls that she did not know which tablets to take. They had put her on maximum levels of Olanzapine mixed with Quetiapine. Then they introduced Metformine with Clozapine contraindicated drugs as they had discovered something plhysically wrong but they tried to make out this was for weight loss. However I proved otherwise by having Endocrinology tests done myself privately.
Stigmatising Trauma Victims:
Many under MH care are victims of abuse of violence/sexual abuse themselves but are not getting the right care. Instead they are being treated like prisoners/criminals. You dont have to commit any crime to be held under Section. A Section is the ultimate means of control and punishment – not care. There are some who have learning disabilities treated this way and others who are suicidal. Elizabeth suffers from PTSD and is a victim of crime and has have anger issues understandably as instead of care she has received punishment and enormous quantities of drugs. No amount of drugs can cure abuse victims trauma – they need therapy not drugs and if the “crime” happened whilst under their “care” then I believe they should receive the correct treatment such as psychotherapy or EMDR and not drugs. Everyone is dumped together on such wards and to some these wards known as “place of safety” can be a terrifying experience. Elizabeth has suffered extreme violence since being on Suffolk Ward. She was constantly hit around the head by another patient, forcibly dragged into the seclusion room and injected by several members of nursing staff, her new slippers split. This is allowed to go on under the law. I have heard screaming coming from the seclusion room in Suffolk Ward which is used frequently for long periods of time so I have heard. The only criteria for release is if someone’s behaviour is seen to be “good” – only then will they get leave so they are kept like prisoners and punished. That punishment can lead to a life sentence of drugging to enormous extent and not being able to see their families, not being able to have leave, being sent hundreds of miles away from home as Elizabeth was to Wales in order to try and sever contact with a family member who happens to be the Nearest Relative. |Millions of pounds of taxpayers money is being wasted through wrong care, over-drugging, long term incarceration and the legal process of tribunals. Some patients can become weakened by the large quantities of drugs and some lose capacity and are under control of never ending “punishment” not care. If a patient is cooped up like a prisoner, denied the basic rights of contact with their families, put on enormous quantities of mind altering drugs whilst under Section then it is no wonder that they can react which only serves to strengthen the position of arguments by a team of professionals that their incarceration be extended and this is punishment to all – this is not care.
It is dishonest to deprive the patient of seeing the full pdf document on Section 17 Leave so I have put the link up for all to see – it is clear that MH patients on the whole are viewed as offenders and not “patients” but criminals yet if they are victims themselves anything that happens to a MH patient is ignored – I would call this abuse.
A MH patient is not receiving correct “care but being held a prisoner under the power of the Secretary of State who gives consent to section 17 leave. I feel very sad at reading this document in full.
Anti-stigma campaigns do not reveal the full ugly truth that the system itself is Stigma and biased and crime to patients themselves is just brushed aside by the Police who cannot be bothered to look into things properly. The legal system is also unfair – if the patient is treated badly by professionals under care or even dies there is no accountability as in the case of Thomas Rawnsley.
ONE SIDED JUSTICE – A System Open to Abuse.
The system is open to abuse giving huge power to Responsible Clinicians – there is no accountability and if something bad happens to the patient this is covered up.
Throughout four months of wonderful care by private professionals that we appointed in desperation Elizabeth came home quite well and they discovered possible learning/developmental disability (this had also been discovered in the files going back to 2008 but dismissed team who stuck with “paranoid Schizophrenia”). No wonder all these years my daughter has gone downhill and declined and prescribed drugs that should never have been given when all along she had PTSD and it was known what happened to her. Now psychologist Dr Kajori Mukherjee has had to admit diagnosis to be in question as I have kept brilliant records which show difference of opinion by professionals throughout. What a waste of public money when over the past 13 weeks Elizabeth has been on various acute wards not receiving the correct care and this too was admitted at the meeting on Tuesday. Now there is a scheme being paid for in addition to the acute ward.
Total disregard for health and safety and what risk assessment was undertaken by placing her in a scheme in the community that was ill-equipped to deal with her emotional distress and did not even have water or toilet facilities up and running when she moved in? Instead of leaving her to settle there seemed to be a structured programme and when Elizabeth felt tired she did not want to join in and overheard conversations like “she is not doing very well” discussed by staff who repeated the manager’s comments after only one week and knowing she was on a month’s trial. It seems only one person bonded with Elizabeth who was a support worker. As Dr Bob Johnson would say “truth, trust and consent” and this is applicable as they have a no tolerance policy so the slightest hint of distress or reaction by Elizabeth would result in staff threatening to call police and that threat in itself can be triggering. Staff were mainly support workers plus a newly graduated psychologist – they accepted at this scheme but all about her but she should have been sent somewhere quiet and peaceful to recover from her ordeal of acute wards of 13 weeks. On these acute wards she was traumatised further by being beaten up constantly around the head by another patient and forcibly dragged into the seclusion room to be injected which from what I heard is frequently done and seclusion room used constantly to keep patients in for long periods of time. This brutal treatment of MH patients is considered to be “care” and is allowed by law to go on in institutions throughout the UK.
Elizabeth has been allowed to withdraw from all psychiatric drugs now after 100 days but doctors are still trying to push drugs at her even though she cannot metabolise them and they never worked. Highly dangerous mood stabilisers have been offered to her by a psychiatrist on Suffolk Ward not commended for PTSD. Elizabeth seems to have incurred injury as when you ask her something it takes a good ten minutes for her to respond – never before was she like this. Having said this she has fortunately not lost her capacity and thankfully we as a family have Power of Attorney. Injury to Elizabeth has been caused by excessive amounts of psychiatric drugs given over 11 years for a condition she does not even have as it says in NICE Guidelines that the drugs are not for PTSD sufferers.
Physical Health Problems:
I have had extensive tests done on Elizabeth and physical health checks. Elizabeth is not feeling well and she is complaining of physical pain. I know from talking to other patients who have withdrawn from these drugs that it can take years to fully recover from the withdrawal effects but thanks to Dr Joanna Moncrieff and the RADAR Programme the effects of long term drugging are finally being researched. Doctors frequently ignore the manufacturers instructions of up to say 12 weeks and carry on for years plus BNF levels are exceeded and this is all wrong as they are supposed to do no harm to the patient. So if Elizabeth is tired and does not feel like coming to meetings or taking part in things she should be respected and left alone and not put under any pressure by a team of professionals as Elizabeth has clearly been injured by these drugs.
No Justice for MH Patient Victims – One Sided Punishment:
In 2010 something really serious happened to Elizabeth documented in files to a certain extent and recorded on CCTV camera yet Police just brushed this aside. Police cannot be bothered when someone is on huge amounts of drugs as they see it that the likelihood of conviction in court is slim. There was a resident neighbour at the scheme bringing lots of friends late at night whilst staff slept. They’ve never been questioned and Police say they could not find the CCTV camera yet there was CCTV footage according to my files. The resident successfully appealed against eviction and remained a neighbour and Elizabeth would react out of fear to get back in hospital. she once grabbed the wheel of my car “I don’t want to go back there and suffer abuse by lots of men”. All they did was move her up a floor but she was absolutely terrified to be there.
Police Interviewing of Rape/Abuse Victims:
I don’t think Police should interview victims themselves. I think they should be interviewed by specialist counsellors from Rape Crisis or similar. There has been more than one instance where Elizabeth has been interviewed by police men and I think this is totally wrong. On each occasion the Police have just closed cases but in this case going back to 2010 I have made a fuss about it and will not let it drop. I’m not going to bother with the complaints procedure by the Police as it is a waste of time but I do want their whole procedures reviewed and insisted on this going right to the top. Interviewing of victims should not be done by them and a victim should automatically be given counselling and referred to special programmes that deal with trauma so they get correct treatment rather prescription of huge amounts of drugs which only add to their trauma. I hope that Cressida Dick will take a look at this case sympathetically and consider a complete review of how Police deal with such victims of crime. I feel if matters had been dealt with more sensitively then lizabeth would have received the correct care and counselling that she so desperately needed and could have recovered by now. No amount of drugs can help ictims of such terrible crime and abuse so why carry on with the wrong treatment of drugging- why is this allowed by Doctors who are supposed to do no harm?
I would like Elizabeth to go somewhere like The Retreat in beautiful grounds where they can properly work on her trauma. There is a year long programme called Acorn. I would like her to receive the correct therapy.
Or I would like Elizabeth to be sent on a residential course for anger management offering treatment such as EMDR for PTSD for a set number of weeks – there are courses arranged through the British Association of Anger Management. I do not want her sent to a private prison like hospital for an assessment that could go on for the next ten years.
I think it is dreadful that mental health patients are treated so badly as criminals under the Justice System when they are victims themselves. This is one sided justice and if professionals were able to manage Elizabeth during four months away abroad this shows up the care on offer in the UK which is totally wrong.
If you are going to place someone in the community then ensure that they are going to get the correct treatment not just dump them in a scheme that offers nothing in terms of the psychological help they truly need to come to terms with the terrible abuse that they themselves have suffered under care in Elizabeth’s case.
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.
I’m so sorry I missed the opportunity to speak to you Tuesday but by writing I can go into much more depth than I could in just a short phone call.
I’ve received literature about Brexit. I don’t see any mention therein of mental health but there is mention of:
Strong economy paying for a strong NHS;
safer streets with crime down by a third
welfare capped to reward work.
You promise in your standard letter “strong leadership, economic security, more affordable housing and good school place for every child – strong economy for a strong NHS”
I will now tie in the above points mentioned in your campaign leaflet.
I would like to know what has actually happened to the NHS in the Health and Social Care Act? All money seems to be up for grabs with no accountability. I find this very disturbing. What are your views on this?
I am seeing the system to be one consisting of forms, roles, bureaucracy procedures, risk assessment geared to maximum profit in respect of inpatient care. Do you think this should be changed with greater emphasis on care itself?
I see abuse towards those deemed “incapable” under MCA – how many vulnerable people are currently incarcerated in “prison-like” institutions costing as much as £12500 per week to the taxpayer? Isn’t this wrong and abusive? Isn’t this costing a fortune to the taxpayer whilst other services suffer?
What about the tribunal system – this can be dragged out for years whilst private hospital institutions do everything to hang on to patients who deteriorate under their care as they are drugged highly. There is widespread abuse going on. It is profitable for private institutions and for solicitors when tribunals fail and under these institutions a vulnerable person can be prescribed ridiculous quantities of concomitantly prescribed mind altering drugs without any accountability. The MCA is open to abuse particularly in a non-public hospital. What do you think of this? How can this situation be changed?
Community care programmes are all about making max profit – some are under the control of commercial bodies – a loaded system that eats billions to benefit not about care but profit. What are your views on this?
As far as I see it the whole system needs change as in the case of those with so called “learning disabilities” this term should not be misrepresented and lowered to obtain MCA incapacity. Unfortunately this is going on resulting in total control for life.
Residential care under Commissioner’s control – its all about compliance and drugging – don’t you think this is true? Real care costs such as specialised therapy and this is what I am currently requesting as I have proven by providing “real” care myself that it works effectively. For four months Elizabeth received the most wonderful care and if everyone was to receive a personal budget I would be inclined to keep this care ongoing as their approach was correct and worked out at a fraction of the price of say Cygnet or Cambian. There needs to be a full investigation into this don’t you think?
I have observed that once you are declared “mentally ill” physical health problems are ignored. This needs to be changed as the long term consequences can result in greater expense if physical health is ignored. The very basics only are carried out under mental health – weight/blood pressure. How can this be improved?
The current system allows abuse and neglect and when things go wrong and professionals are unaccountable – as a result there is more than one Winterbourne. The most weak and vulnerable people are put at risk by a system that allows unaccountability/protection but how can anyone learn from mistakes when there are no measures put in place to ensure accountability resulting in the same procedures allowed to be carried on instead of changes made?
In the COP there is no support for families unless you can afford to pay huge sums for it in terms of legal representation. In our case the drug Clozapine was declined by my local area of Enfield but this case of “Deprival of Medication – Community Care” was replaced by attempts of certain professionals to Deprive Liberty, force return to care my daughter who had no food at the weekend at a care home in Northampton where a CTO was being arranged. This is abuse and Professional bodies rally round to protect those involved but to deprive medication to force return is not only abusive but can be life threatening when I did offer to go and pick it up. There is no accountability.
I know of others apart from Elizabeth who have suffered under care so badly they are traumatised and suffer from PTSD. What can be done about all of this? What about adopting a system of open dialogue available to all who want it?
A Trust/Council will investigate themselves and they all stick together to protect one another and I do not think this is right.
The CQC have limited powers. This needs changing.
The PHSO want to speak directly to the person concerned and even when there is clear abuse and neglect by professionals they wish to hear from that person more than once in phone calls to ensure it is what they really want when really that investigation should go ahead.
We have been subject to safeguarding and a vulnerable person (my daughter) used by certain professionals under social care (who know nothing about my family) to encourage/put pressure on that vulnerable person to tick boxes alleging all kinds of abuse. Never are these professionals included in this abuse as they are above the law. I had to report all of this to the Police myself. I am assuming that this would have led to gagging if I had not obtained the minutes of the most shocking content and Elizabeth was put under pressure and up against 9 professionals without any advocate as they did not want to pay for Disability Action. This in itself is abuse – what can be done about this as all of this is a waste of time and public money as they should have been discussing what could be provided as Elizabeth had nothing to do – this could have gone on direct payments as we requested and in all the time Elizabeth was at home absolutely nothing was provided – no assistance whatsoever.
I believe that the system needs to be more open and transparent – after all this is taxpayer’s money. You could do this by making Open Dialogue compulsory to all councils and Trusts. This would save a lot of money as people like myself would have no complaints.
The public need to be able to view Council/Trust’s tenders for work and contracts as well as what the public accounts committee is doing. The information needs to be easily accessible.
Mental Health Care:
A huge chunk of MH care has now been privatised but our experience of private sector care has been awful. Elizabeth has come out worse and I believe this money should be spent on improving the NHS instead. If someone has been abused under their “care” then they should provide the necessary treatment and facility for trauma immediately. It only takes 10 days to get funding in place and in Elizabeth’s case there is no excuse to delay all of this. I am sure there are many similar cases as with the right approach Elizabeth could be helped as I have proven. So there should be more personal budgets readily available as I found good care abroad that worked and if their approach was evident in the UK’s mainstream care then the wards would not be overflowing like they are. Correct approach could save a lot of money to the NHS which involves correct training and so could proper testing to see if someone can metabolise the drugs before drugs are prescribed. Elizabeth will be writing more about her wonderful care shortly.
The NHS needs huge improvements to be made under mental health care with regard to facilities and care provided so much money is being wasted. The private sector care funded by the local area did not work. A place like a prison is not the kind of environment to get well in is it?
There should be specialised facilities for PTSD and Police approach.
Police need to delegate questioning of someone who has been the victim of rape/abuse to other more specialised organisations who know how to go about things correctly and have better skills to deal with someone who for example has a learning disability or Aspergers. They should not be quick to ignore or sweep things under the carpet. Any suspected rape/abuse cases should instantly be referred to proper counselling and their a label such as “schizophrenia” for instance may be completely wrong which should be reviewed in the circumstances. Specialist treatment such as EMDR and psychotherapy should be readily available.
Strong Economy paying for strong NHS – vast sums of money are being wasted under current MH care and this needs urgent review and by such huge spending under private sector this is weakening the NHS.
safer streets with crime down by a third:
Enfield needs more Police Officers to tackle a spate of recent knife attacks. However I would stress that placing people from MH hospitals from acute wards into the community without them having access to ongoing psychotherapy and treatments for PTSD is very wrong. If less money was being spent amounting to over £12K per week on private sector wards then there would be more funding for the community care and treatment that is much needed. Every area should have good facilities for treating PTSD and assessing patients properly. No amount of psychiatric drugs can help someone who themselves have been victim of terrible abuse and then there are patients who cannot metabolise these drugs and are labelled “treatment resistant”. A waste of money to keep giving them drugs in the circumstances. That does not stop a psychiatrist trying to prescribe another form of drugs such as “mood stabilisers” off label and this can itself trigger psychosis. There needs to be greater monitoring of what is going on under psychiatry and what patients are being prescribed. Tests like I had done for Elizabeth ie P450 liver enzyme should be given as a matter of course and if physical health was monitored properly by way of Endocrinology tests then this would also ensure the accurate treatment as the patient may have a physical health condition rather than mental health condition. Improvements need to be made urgently and care given on an individual basis as everyone’s needs differ.
welfare capped to reward work.
Mental health conditions might mean that someone cannot work and this is not because they are lazy in any way – I have documented for instance the huge quantities of drugs Elizabeth has been prescribed under Enfield MH in the past. Such huge levels of drugs are questionable as what are doctors doing prescribing such high levels? – they must surely know that this will cause injury, could harm the patient? When someone like Elizabeth who cant metabolise the drugs and suffers from adverse reaction this is a dangerous situation and so how can that person work? What is not understood is the long term effects of these drugs and I am pleased that East London NHS Trust are looking into this via the RADAR project. This needs to be extended to all acute wards as there are terrible side effects from these drugs which are disabling to the extent that a person cannot function and there is not one single facility for a person to withdraw off the drugs safely when there is doubt about the diagnosis. What can be done about this unsatisfactory matter? Even when someone comes off these mind altering drugs it can take years to feel well again physically and Elizabeth has complained of physical pain and tiredness. There is ignorance from doctors who thing that someone should recover after a few weeks – it can take years. For someone genuinely affected with MH conditions to have their welfare capped this can be quite devastating and make that person suffer more. Many people have suffered injury as a result of their “treatment”. There is no accountability for this is there? It is not just a case of believing someone to be lazy as some people like Elizabeth can be very limited but when Elizabeth came back from Australia we saw a huge improvement. If only the local area could have provided just a little then that support could have gone a long way. I am sure Elizabeth has suffered as a result of her “treatment” of enormous quantities of mind altering drugs concomitantly prescribed by doctors who appear not to care less about the physical health of that person. Well done to East London NHS Trust – Dr Joanna Moncrieff RADAR Programme. It is good that the long term effects of these drugs are being looked into at last. If there is any doubt though in terms of diagnosis this should be investigated thoroughly and the facility provided to enable safe withdrawal especially in cases of adverse reactions.
On this beautiful sunny day Elizabeth is back on Suffolk Ward. I am going to visit her over the weekend. She is not allowed out but drug free after 95 days. A couple of weeks ago she was discharged into the community following 13 weeks of being on various acute wards. Elizabeth was getting so distressed at being on wards that are volatile and noisy, witnessing the “treatment” of others who are being forcibly injected, drugged and some given ECT. This has only served to increase the trauma suffered. It saddens me as not long ago we sent her away to a lovely peaceful and natural environment which gave Elizabeth the strength to tell the entire family/close friends about what happened to her at the Moti Villa Scheme and other things not previously revealed. This care involved psychotherapy and the professionals were getting somewhere in helping Elizabeth for the first time. When Elizabeth came back home she deteriorated as there was no ongoing therapy and the area triggered reaction as this is an area where there are not good memories. She ended up in hospital when she refused to take the small portion of Abilify and has been allowed to withdraw although professionals have tried so hard to get her back on the drugs again. Each time Elizabeth has refused their attempts.
So the team placed her into a supported living scheme. The scheme was new but part of a network of similar schemes in a nice location. I felt happy that finally after all that time of being on acute wards she was being released and felt that anything would be better than being stuck on acute wards. I begged for Elizabeth to go somewhere first to a more peaceful place in order to prepare for her release into the community but this was ignored.
The house/scheme had a support worker and newly graduated psychologist and according to their brochure offered music/art therapy and aromatherapy. Despite my reservations I was hopeful that eventually Elizabeth could settle down and I hoped that she would be understood by staff working there just like the private MH professionals understood her. The longer you keep someone incarcerated the harder it is to rehabilitate them. When Elizabeth moved in there was no water and no toilets working and this was not up and running until the next day (Sunday) some time after midday. I think Elizabeth was moved very quickly in haste without much thought to health and safety/risk factors. Unfortunately Elizabeth became very stressed out in this new environment as too much was expected of her – it was too much too soon and through lack of understanding.
If Elizabeth has the condition Aspergers and PTSD then this needs to be fully understood in itself but she has been denied proper assessment and it is no wonder therefore that past care has failed her. MH professionals are not necessarily trained to understand such conditions as autism/aspergers which is essential.
I decided not to come round to see her immediately at the scheme but to allow her to settle down. She moved in on Saturday (last Bank Holiday). On Sunday I received a call from her asking me to visit. I brought round some of her possessions including her guitar as I hoped she would be having the music therapy whilst there. I felt happy in reuniting her with some of her things I could not give her whilst she in hospital. I met for the first time her keyworker who I really liked. I liked the house and area. I came away feeling positive. During the week I got a call from Elizabeth worried about her physical health. She had been complaining of backache, headaches and stomach cramps for some time before being discharged from hospital and kept trying to get help from doctors (psychiatrists) but on a psychiatric ward physical health seems to be ignored. All she was given was paracetamol but there were no intensive physical checks on her health apart from maybe blood pressure and weighing. So the support worker was woken up by Elizabeth and waited with her around 5.00am in A&E. Elizabeth had blood test/various other tests done which appeared OK but what she really needed was ultrasound or further endocrinology tests. I pointed out to doctors that there were specific problems mentioned in private tests I had done but this was not looked into. Elizabeth was very tired and sounded unhappy during her call to me and I felt very sad about the situation. The dedicated support worker must have been exhausted, waiting for hours to be seen in A&E but I am most impressed with this particular support worker.
The following Saturday Elizabeth still at the scheme but again sounded unhappy when I took the call. She had problem in accessing money and complained there was no food and I had to reassure her that the next day I would try and help her but there was a new support worker on duty this time. I have noticed that Elizabeth finds hard to adapt immediately to any changes and now there was a new person on duty. Elizabeth said there was no food but when I spoke to the support worker I was assured that this was not the case. I did not wish to come round that day as she sounded quite distressed and I did not want to make matters worse. On Sunday I called round to the scheme with a close family friend and Elizabeth was lying on her bed around midday not feeling at all well complaining still of physical pain. There was a lot of noise as workmen were making part of the living room into a medicine room. I think all of this contributed to upsetting Elizabeth too. How can any amount of medicine help someone who has suffered the most appalling abuse under care that has never been dealt with properly. Anyway I took her out in my car for a nice drive and we went right out in the countryside and Elizabeth started to feel happy again and was very happy when she returned back to the scheme.
Whilst out Elizabeth started to talk about her daily life at the scheme. I was concerned to hear that she had overheard private conversation to the effect that “…………….(Manager) of the scheme does not feel she is doing very well” Elizabeth felt relaxed to tell us more and complained about being put under pressure. She was upset by a visit from her care coordinator in the first week suggesting meetings at another location. This care coordinator was involved in recent safeguarding and I could understand Elizabeth’s reaction as this was triggering for her. She told me that she had reacted in distress following the care coordinator’s visit but the very nice support worker was on duty and knew how to handle the situation whereas others wished to immediately call police. This was a far cry from the private care we provided where professionals were able to talk things through and deal with situations effectively but when I read through the brochure of the scheme it says they specialise in mental health and learning disability but I could see that they have a “no tolerance” threshold. Elizabeth complained that everyone was talking at once on occasion/s – another time that she felt she was being ignored and a new lady had moved in so there was yet another thing for her to get used to. I feel Elizabeth was very much misunderstood by the majority.
From what I heard only one support worker was bonding with my daughter and understood her. There was a new resident just moved in and I found the new resident to be nice but in order to adjust to new situations what they should have done is just leave her alone to settle in for a couple of months at least. Elizabeth feels constantly tired having come off powerful drugs but there seems to be no understanding of this whatsoever.
The Psychologist who is newly qualified and attached to the house where Elizabeth resided did not seem to understand her. I don’t know what to think – sending Elizabeth away for four months with MH professionals/peer support/music and art therapy clearly worked wonders so I know it is possible to work with her but here, at this scheme, things were falling apart but this is reality – this is community living but is still restrictive when you are expected to attend this meeting or take part in activities immediately and what if that person does not feel well and does not wish to join in all the time. All the time the resident is being monitored as to how you get on and knowing that you are on a month’s trial adds to stress. This is in stark contrast to when Elizabeth stayed in the family home of MH professionals who allowed her time to adjust and settle in without pressure and demands put upon her. Elizabeth could have coped better if she had been sent somewhere first to adjust in a quieter environment having been on violent/noisy acute wards for 13 weeks. You cant just take someone from acute wards after all that time and expect them to immediately take part in everything.
I have written to the owner of the scheme and told him what worked for Elizabeth – ie psychotherapy, art therapy, music therapy. I complained that I was not notified of Elizabeth’s transfer to hospital by anyone at the scheme. I told the owner I liked the house and area but questioned the ability of staff to bond with Elizabeth and said it was not about qualifications but life experience and that only one person had a way with her. I mentioned I knew someone else who could maybe help but that it was not a good situation when only one member of staff understood Elizabeth and knew when to stand back allowing her time and space. I spoke to the Manager of the scheme who understood that Elizabeth could not process too much information all at once and could cope with too much talking. After all, take a look at the amount of drugs Elizabeth has previously been prescribed:
800mg Quetiapine Nocte
Clonazepam 1mg Bd
lorazepam 1-2MG po OR 1/m PRN (4MG MAX/24 HRS)
Haloperidol 5-10mg PO (30mg max/24 hrs
She was also given zopicol.
The Manager said the scheme was still open to Elizabeth but I pointed out it was extremely damaging if staff called police every time Elizabeth showed signs of distress and that if they stepped back and just left her alone she would calm down. Also they should allow her to slowly/gradually adjust to her new environment instead of pressuring her to participate and attend meetings immediately. She had after all been on acute wards 13 weeks.
Now on Suffolk Ward it has only been one week since her arrival. There is a new Acting RC called Dr Liveras. The Psychiatrist who has seen Elizabeth twice so I believe is called Dr Abraham. Elizabeth is in a shared room right now and I have visited her twice in the week bringing possessions and food.
I have to take yet another day off to attend a meeting next week on Tuesday next week and hope Elizabeth’s sister can also attend with me. It is so horrible to think that Elizabeth is cooped up on a ward not allowed to go out in the fresh air. This is what caused Agoraphobia whilst at Cambian. It is a step backwards as there was never any problem in her going out and walking outside of the ward was quite therapeutic for her. I hope this situation will not drag on and also it is a very costly situation.
Yesterday I got a call from Elizabeth that concerned me. A doctor (wont mention his name) suggested to Elizabeth that she should think about going back on on medication. He was not suggesting anti-psychotics which Elizabeth cannot metabolise but suggested mood stabilisers. I had heard that they are good by someone I know who has Bi Polar but nevertheless as I do not know anything about these drugs I decided to look into matters further by contacting an expert on the drugs that I know and I was informed “mood stabilisers can trigger psychosis themselves and no mood stabilisers are indicated for the condition of PTSD” and I was told that “this is a dangerous “fashion” in psychiatry.” I had also looked up the mood stabilisers such as Carbamazepine or Mirtazepine which are said to have disastrous consequences re PTSD. I looked up Topiramate which is for seizures and only approved to treat seizures but sometimes is used for other conditions yet not been approved by the FDA to be safe and effective. Therefore I decided to ring the psychiatrist concerned yesterday afternoon quite late in the day. I told him I was aware of the fact he had suggested mood stabilisers to my daughter to which he replied that he “had not”. There is no way that Elizabeth would have spoken so openly using the word “mood stabilisers” had she not been spoken to. He started to get agitated when I insisted that Elizabeth had been spoken to and tried to make out this was a lie. I said no way was this a lie and he went on to say that the call was “being recorded” so I told him likewise as there were people around me witnessing this. Suddenly the line went dead. The phone had clearly been put down on me. I then contacted Elizabeth to tell her what more than one leading expert had told me about the safety of mood stabilisers. I said “whatever you do…. do not take them as they could cause psychosis in themselves”. More harm than good.
Elizabeth also told me that she had a visit from Clinical Psychologist Dr Mukherjee who claimed to be able to help her. I don’t know what she means by that as from what I understand this Psychologist is shared by lots of different wards and I cannot see that a once a week visit can help at all whereas if Elizabeth was sent somewhere where they specialise in rape/abuse/PTSD/anger management on a long term programme such as the Retreat offer then Elizabeth will eventually get better. Under a small Assisted Living Scheme you cannot deal matters of anger management and certainly this is something out of depth for someone newly qualified in psychology. It requires much more specialised treatment and there are special treatments available that are effective such as EMDR. It is only natural that I should ask for this to be provided.
I cant believe that the team ignored health and safety risk factors by placing Elizabeth straight away into the community without providing the specialised psychotherapy/counselling/EMDR etc. Releasing her into a scheme that was not ready and had no water/toilet facilities up and running.
As Inspector Brown said in his blog “what the hell is going on”.
I am going to write next a letter to the Rt Hon Theresa May open dialogue style – I am very concerned that there is the wrong care being provided and not available to so many, not just Elizabeth and that there seems to be no accountability so if there is no accountability how can anything ever improve. Also the general public should be questioning where public money is being spent just as I am.
There are two alternatives:
Either change procedures at the scheme to be more accommodating towards Elizabeth, employing only staff that can work with her and not enforcing her to attend straight away meetings and ease back on monitoring her progress when all she wants to do is just have time and space to settle down initially. The support should be in the background as and when she needs but not forced upon her as it she will ask for it but she is not alone but she should be surrounded by only those who understand her and not put pressure on her. It is this view that should be taken and staff briefed on how best to deal with Elizabeth so Police are not called constantly if she becomes distressed. I have proven that MH professionals can work with Elizabeth to the extent she travelled far and wide with them so how comes all is failing in the community and only 1 support worker really understands her and knows best how to deal with situations.
The other alternative is to provide funding for Elizabeth to go away on a specialist long term programme for a year to The Retreat, set in beautiful grounds where she can relax and take part in the correct kind of therapy relevant in dealing with the trauma resulting from the abuse she suffered whilst under care through Enfield. I think seeing as she has been abused under care itself it is only fair that this is provided and Elizabeth gave me permission to deal with the Commissioners in this respect. I was told that I should be hearing next week in this respect and the person responsible for the funding under MH is called Peppa Aubyn. The Retreat whilst not local could benefit her making a return to the local area successful in due course and if she is to remain on a section then certainly this rather than an acute ward should be provided as an acute ward cannot provide the right kind of therapy. An acute ward is not the right place for Elizabeth to be.
A scheme open, coupled acute ward is costing a money and I don’t want this situation to drag on for weeks and weeks on end but on the other hand measures must be put in place to ensure that reoccurrence does not happen when Elizabeth is constantly sent back to the wards. The Rt Hon Theresa May would like to see people living in the community and not incarcerated long term but first of all you need staff that are highly trained to deal with situations like those under “working to recovery”.
If anyone has been subjected to severe stress over a long period of time they could be suffering from such a condition which would explain one reason why the drugs do not work. Liver enzymes such as the P450 group might be comprised by an undiagnosed condition such as Selyes and if so the patient’s ability to metabolise the drugs might be similarly compromised which is why all of the drugs Elizabeth has been prescribed do not work.
Many soldiers returning from Afghanistan are drug refractive and many are suffering from PTSD – this could coincidental but clearly needs examining”.
PTSD originally was believed to have been caused by a single shocking event such as disaster or being attacked. It is now widely recognised that sustained stressors can be even more damaging and disorder of extreme stress is the long term version of the one-off event causing PTSD”.
Elizabeth has been misdiagnosed and consequently had been caught in a revolving door style trap. The situation she has been in has caused the stress. it is incredibly important that she is reassessed and that her endocrinal function is checked out. (Yes I’ve done this). The metformin prescriptions are because medics have identified a dysfunction and have misinterpreted both its causes and its effects.” I have proven this to be correct.
I have had the P450 liver enzyme tests done by the world leading experts in Rotterdam. In addition I have spent over £1000 on endocrinology tests which prove my point.
Both Endocrinology tests and P450 liver enzyme tests should be given to everyone first. All these years Elizabeth has had the wrong treatment and the wrong diagnosis and up until now no one would budge on it. The treatment has caused Elizabeth to suffer from a lot of pain.
She is now out from hospital after 13 weeks of being on acute wards drug free after 80 days but some doctors think you just get over a withdrawal after just a few weeks and this is not the case. I did not agree with the decision to just place her straight into the community without providing proper intensive trauma therapy that Dr Johnson mentions in his accurate report.
Elizabeth has been placed in a new scheme in the community and still appears to be under the same team whose Responsible Clinician is DR Bassit Hussain based at Silver Street Enfield. All of them were involved with the safeguarding so I am not too happy as I thought she would have a new team.
It has only been a week in the scheme but Elizabeth is finding things hard to adjust after the noisy volatile atmosphere of the wards. The scheme has 24 hr care with support workers but I must say I am pleased with one – I’ve only met the one support worker. This is Katherine and she is a mother herself. I really like her approach with Elizabeth.
It is a nice house, in a slightly different area but nice area not too far away. I think the team rushed to get Elizabeth out from hospital as I was complaining it had been 13 weeks on acute wards – far too long and she was going downhill. but I had been asking for somewhere like Khiron House where they offer the correct therapy.
It is too early for me to comment on the scheme yet but I am not getting the distressed calls from Elizabeth every night and during the day like before. She has contacted me a couple of times. Elizabeth needs to get on with her life but it is difficult to adjust and the team need to be patient. I get the feeling from listening to Elizabeth that some team members are rushing her – no one can make a judgement too early.
I took a friend over to visit on Sunday and we took her out for a drive into the countryside. I do not like microwave ovens so I took over a steamer, a nutribullit, garden chairs and some cooking utensils and plates. I took Elizabeth shopping but she felt very tired and had to go and sit in the car. I bought some healthy food and hope she can live more healthily and not live off takeaways. I have had extensive tests done at the Bio Lab that show some mineral/vitamin deficiencies. Elizabeth is now registered with a GP but is worried about her physical health. I have warned her that some of these GPs like to prescribe anti-depressants for physical health conditions and to be very watchful. The surgery needs to be aware that Elizabeth cannot metabolise these drugs – they could produce an adverse reaction as we have seen on Prozac and practically all of these drugs – none of which have done her any good. Elizabeth is complaining of cramps, headache, backache – I am keen for her to be included in the RADAR Research as she has been allowed her to come off the drugs in accordance with her wishes. It is a waste of money to give drugs that do not work and especially wrong if there is the slightest hint that the diagnosis may be wrong or there may be some physical health problems.
I agree that physical health problems can be caused as a result of stress caused by trauma.
It is early days and I hope that after my email to the team today they will not put pressure on Elizabeth especially to go to yet more meetings. At the last scheme Elizabeth was dragged unrepresented to four safeguarding meetings. It is no wonder she does not want to go to any more meetings and I am far from happy about this. At home we had no support. Those meetings were not about care and instead of what 9 professionals could do to improve things instead they centred the meetings on me. Luckily I got hold of copies of these minutes and reported them to the Police.
It would be better if Elizabeth could be referred to another team such as Dialogue First – we were deprived joining Dialogue First and I bet this did not cost a great deal and could have benefitted everyone.
So I think the Dialogue First should be available to everyone especially those cut off from their families in hospitals.
Sometimes professionals do not act in the best interests and this is why it is important that more funding can be given to this wonderful programme nationwide.
I am looking forward on Friday going to the event at Kingsley Hall where Dr Moncrieff is speaking.
I am hoping things will go smoothly at this new placement and that eventually once Elizabeth has settled in she will want to do things with her life but she will need a mentor and ongoing support for some time- just hope she can settle down and it says in the brochure that they provide music therapy, art therapy and aromatherapy. This sounds fantastic. I think Elizabeth will like this very much provided these things are given as per the brochure. These are the kind of things that were given to Elizabeth when she went away for four months having private care with excellent MH professionals and I have taken the wonderful pictures Elizabeth did using the technique of “threading” to be framed.
So I’m happy with the area, the house is nice, a nice support worker but I will not be happy if Enfield do not provide the music therapy, art therapy and aromatherapy and proper counselling – now that I have seen that my local area what huge funds they have to spend it needs to be spent properly. It should not be a case of dumping someone into a house in the community without any activities once again and I will soon find out and I will keep you all informed how I get on as once these things have been provided I will feel much better knowing that the correct treatment is in place and NOT these mind altering chemicals that Elizabeth cannot metabolise. Besides, these psychiatric drugs are not for the condition of Selyes Generalised Adaptational Syndrome – the correct diagnosis in my opinion.
Last of all I am looking forward to doing a course on PTSD in June at the Recovery College.