I post below amended leaflet and my story based on true facts.
I have not written a blog for sometime as I have been extremely busy.
LONG TERM DRUGGING – MORE HARM THAN GOOD: I went to this debate with my two daughters and met other mothers and former patients there. The most promising speeches came from Professor Gotzsche, Professor Timini and in the audience Dr Bob Johnson – who should have been invited on the panel in my opinion plus Sandra Breakspeare of Chy Sawel and others who have been badly affected by the shocking treatment of the UK. I wished to speak and was disappointed that I did not get chosen and in the circumstances I would therefore take the opportunity to write what I would have liked to ask below:
“Why is it my daughter is being drugged for the rest of her life when she is “chronic treatment resistant” – when she has physical conditions that I can prove in the files and with all the multiple diagnoses why hasn’t my daughter seen relevant experts in the field of PTSD, Aspergers for instance and more importantly why are drugs prescribed without any proper tests done beforehand and why “symptoms” are automatically thought to be that of mental health conditions when in fact it could be physical such as Endocrinal disorders and not everyone can metabolise the drugs.
It is not good enough that my daughter’s physical health is overlooked and that is why I have approached the leading experts who were only too happy to help. The relevant tests have been agreed and I am so happy that the world’s leading expert in metabolism will carry out accurate tests and unlike in the UK, this could lead to better treatment that no one can overlook as this will be evidence based. Every mother including myself has had enough of seeing the most shocking treatment to their vulnerable sons and daughters and wish for the dosage of drugs to be given at minimal levels. There are no facilities to enable someone to withdraw from the drugs safely and what kind of Country is this that gives someone a lifetime of drugging and incarceration at huge cost to the taxpayer when they have developed physical health conditions and injury due to faulty treatment given on a trial and error basis. I know lots of cases where parents really do care and want something done about it and I hope to highlight such cases as this shoud be front page news in my opinion. It should be of huge public interest especially at a time when services are cut and A&Es are shut down. It is no wonder why because the mental health care is not working. It is more important that the experts are involved that know how the drugs work so that accurate treatment at minimal levels can be given and also help to come off the drugs when serious physical conditions are discovered. If a proper assessment had been done in the first place it would have been discovered that endocrinal disorder was the cause and not mental “illness” – I have proven this fact at huge cost. In the long term money would be saved if patients got the correct treatment rather than one drug after another on a trial and error basis and now there is talk that there is no such thing as Schizophrenia and I brought along my younger daughter to Institute of Psychatry as proof of this fact.
Here are the tests I am having done in Rotterdam: CYP2D6, CYP2C9 and CYP2C19 – However I will not know until next week whether the GP can help me but I have contacted Dr Moncrieff in any case and am prepared to take Elizabeth to Rotterdam myself in order that she can get the correct treatment as there is no treatment being given at all right now and with a diagnosis such as PTSD Clozapine is not even recommended for this.
As for the diagnosis of Schizophrenia:
Correspondence from the Head of the Canadian Health Service:
“Dr. Supriya Sharma, Director General of Health Canada admitted : “For mental/psychiatric disorders in general, including depression, anxiety, schizophrenia and ADHD, there are no confirmatory gross, microscopic or chemical abnormalities that have been validated for objective physical diagnosis ” .
It means there is no pathological cause of the so called ‘disease’ euphemistically described as schizophrenia. No chemical imbalance, no lesion either biochemical or physical in nature. There are no disease markers (abnormalities) either at the microscopic or biochemical level.
Well that says it all THERE IS NO SUCH THING AS SCHIZOPHRENIA. It is a good thing I am the Nearest Relative to look into such matters and to do something about it.
Anyway the one thing I was disappointed about with the Maudsley Debates apart from not being able to speak myself was that whilst Professor Gotzsche mentioned about providing facilities/helping people come off the drugs that do not work – where is that help when lives are being put at risk. Surely this should be a main priority and that there should be something immediately done about this unsatisfactory situation. You only have to express discontent and challenge a team of professionals on the subject of drugs to be on the receiving end of the kind of bullying that we have experienced as documented previously.
I went to the ISPS course on Open Dialogue in Liverpool on Friday 15th May which was an extremely well run event. I shall write more about this in my next blog but we ending up doing Open Diaglogue in groups and myself and Elizabeth started off the discussion based upon real life experience. It is one thing writing about it – I did not find it easy speaking in depth to a group of people I had never met before about this personal situation that Elizabeth and I endured with Court etc. Elizabeth joined in the conversation herself which was very good as I am trying to get her to communicate and I have seen important in this respect since coming home. I know that certain areas are doing pilot schemes on Open Dialogue which I think is brilliant. All the former patients I meet with and parents would like to see this in place and it has been proven to work. I am a good reason why open dialogue should be adopted as open and honest discussions on an equal basis are the best way to solve a situation and even avoid matters progressing to crisis point. We spent all day at this Conference and later saw some of the live entertainment being held on the streets of Liverpool although Elizabeth was quite anxious and I could not watch the entertainment for long. She settled down later and we went to the Cavern Club and on the way back we visited one of the mothers I have been writing to on social media. This mother has a son in a care home like so many I know on huge amounts of drugs and we share in comment the fact that her son/my daughter spent time on the same ward and that we were placed in a situation where visiting was not easy due to distance. Virtually no help is given to families so they can visit and if the placement is a long distance away from home that can lead to having to stay overnight which is very expensive. We had so much to talk about and shared similar experiences and views on what we thought of the treatment and how physical health and injury to the patient was completely being overlooked. For families such as this who really care and I am in touch with several, the answer is to offer more Carers Allowance and direct payments and the answer is not to keep someone on never ending sections but it is cheaper to give a budget to a family who is caring, who would spend that money wisely on helping the relative get better and the answer is integration, not exclusion and it would be cheaper than spending over £60000 a year on care homes and even more on private sector acute wards and something needs to be done about legal bills and taking families who care to court to deprive liberty. Elizabeth was thought to be a case that was of little hope judging by what I have read in the files. I am very lucky to get her away from such treatment of long term incarceration and have her at home and now it has been a year. A saving of £60000 a year is made to the local Council who provide nothing and who have wanted to destroy my family. My daughter’s life was put at risk by professionals and the family nearly torn apart by them. I am proof that things can work out at home despite the views of professionals who claim to know the family but even the Family History in the files is wrong. For someone vulnerable like my daughter it has proven difficult to protect her within the care system and when things have gone wrong this is another reason why severing of contact is attempted to get rid of someone that could speak out. What kind of a legal system do we have where a vulnerable person’s fares are not even refunded and where that person was left without “treatment” in breach of Human Rights Law and Mental Health Act.
“You will have to take the drugs for the rest of your life” – this is the comment said to Elizabeth by two consultant psychiatrists who I feel like naming.
Now there is the debate coming up shortly of the Institute of Psychiatry (Maudsley Debates) below and it is at last being recognised that the drugs can do more harm than good. So, I hope that I will get the chance to speak at this debate or better still my younger daughter is happy to get up and speak on behalf of her sister who has been classed as a case of no hope yet I am about to prove otherwise to everyone. Elizabeth’s sister has been diagnosed as having Schizophrenia as a child – can anyone explain why my younger daughter is on “top of the world” – well I put it down to the fact that I managed to successfully get her off the poisonous chemical – Risperidone given to her locally by a child consultant psychiatrist. It was not easy to get her off either- the drug made her more anxious than I’d ever seen before and caused enormous weight gain. From seeing this, I became very much against the prescribing of drugs to children in fact not only to children but also to the elderly such as my father with Alzheimers and anyone in fact. These drugs are not easy to come off and there is no help whatsoever and if someone tries to take themselves off these drugs instead of a doctor correctly recognising withdrawal symptoms they give a label and say there is a mental health problem so someone can easily be misdiagnosed like Elizabeth has been. With no school to go to locally due to problems I wont go into here, I searched for a good school in another area and it is thanks to the school SusieEarnshaw Theatre School that my daughter is on top of the world. Thank you so much.
With a father who had Alzheimers going downhill over a ten year period, that took up a good deal of my time to point it practically took over my life – suddenly I had other caring responsibilities for my younger daughter but I was determined not to put my father into a care home as this would have been against his wishes. I wish I had questioned to begin with the drugs given to my elderly father, instead of trusting the doctors -how I wish I had looked into this thoroughly. I would urge anyone that has elderly parents not to just place their trust in these doctors but to look up the drugs themselves and to question matters – why put someone elderly on anti-psychotics. My father was a placid man, this changed him into someone who could have mood swings – bouts of aggression like never before which of course doctors never associate with the drugs given but put down to symptoms of illness – this is rubbish. I now recognise the “symptoms” in both my father’s case and my elder daughter’s case as caused directly by the drugs themselves. The drugs caused my father to have a heart attack and were giving him no benefit whatsoever, just like the drug Clozapine is giving my elder daughter Elizabeth no benefit. The drug Aricept “worked” in preserving my father’s ability to prolong a better state of life but when this was withdrawn my father went downhill rapidly and ended up in a wheelchair. Never once did I wish to give up and put him into a home – constantly various staff members would say to me “why don’t you put your father into a home – he is taking over your life” – well I did not see it like this at all. Yes there were many sacrifices – I was working part time – I could not go far on holiday or even consider going abroad. There were many problems when my father went into respite and staff would contact me as they could not always cope. On one occasion he went missing and somehow found his way back to his old home that was miles away. Now the doctors have ruined Elizabeth’s physical health and I want something done about that, not just a debate – they do not care less – what would they do if this was one of their relatives? – would they give the maximum of drugs if it was one of their relatives? I can clearly see that Elizabeth is just a number to them – one more case of their enormous workload of MH patients left on long term drugging, prescribed drugs at the maximum levels and the care is not working and why – because emotional issues are not being addressed at all as described perfectly in the book Emotional Health by Dr Bob Johnson. They want to drug Elizabeth for the rest of her life yet are ignoring serious physical conditions that I have seen in the files recently acquired and proven further by having private endocrinology tests done. They are supposed to do no harm and are protected by the law so when things go wrong who is going to find out if someone is in such a hospital where visits are restricted and so is contact with family. Police and social services just back them to the hilt but I respect those who are against the system but understand how they just go along with it all because otherwise their jobs would be at risk. I personally would take the opposite course as I could not go along with anything that was not right. An example of professionals not caring less – a Neurologist at Queen’s Square said “optimise the drugs” -surely a decent doctor would not wish to optimise the drugs, causing harm to the patient’s physical health but I can prove the harm they are causing and who is responsible for this. The law protects them – the law is not helping people like my daughter. I wish I could say more here but I will in due course. So the Professionals that do care are afraid to speak out as it is more than their job is worth. Well I am not afraid to speak out against this kind of abuse.
I have just been invited to the Legalex Exhibition but this is on the same day as the debate for institute of Psychiatry – I do not know if I can get along to this but I have had the most shocking experience of solicitors and their handling of my daughter’s cases involving court- I might just contact the organisers of this event – I am far from happy by the way my daughter has been treated by the legal profession. If there was anyone that can help me at this wonderful Exhibition I would be happy to attend with Elizabeth and her sister.
If any of you that follow me on Twitter are attending the Institute of Psychiatry Maudsley Debates I would be most happy to meet you and introduce my two daughters and all the other mothers.
52nd Maudsley Debate: More harm than good?
- Denmark Hill Campus, Institute of Psychiatry (Main Building)
- Public Talk
- 13/05/2015 (17:30-19:00)
This house believes that the long term use of psychiatric medications is causing more harm than good. And the House I hope is going to do the voting fairly this time and count votes properly from those in the overflow room.
This event and the waiting list are fully booked. To receive details of future events please join the mailing list.
Chair: Professor Til Wykes, Professor of Clinical Psychology & Rehabilitation and Vice-Dean, Psychology & Systems Sciences, IoPPNForProfessor Sami Timimi, Consultant Child & Adolescent Psychiatrist; Director of Postgraduate Education, NHS Lincolnshire; Visiting Professor of Child & Adolescent Psychiatry, University of LincolnProfessor Peter Gøtzsche, Director, The Nordic Cochrane Centre, DenmarkAgainstProfessor Allan Young, Professor of Mood Disorders, IoPPN )Mr John Crace, Journalist, The Guardian ) I am looking forward to showing you evidence and for you to hear from my daughters directlyProgramme17.30–18.00: Refreshments18.00–19.15: Debate19.15–20.30: Reception
An example of truly shocking care in the UK, not written by me, but sadly familiar as I have seen and visited people in such awful places – it is not always the case that these patients who are held like prisoners have committed atrocities and are of risk to the public yet this is going on today in the UK and I can provide examples of cases:
I wish to share with you an example of the shocking care and treatment on offer to MH patients in the UK – this is not being publicised in the press as it should be – “I have no doubt a hospital environment would suit Elizabeth.” said a member of the team. Well how can this kind of environment be helpful to anyone? Elizabeth has been in a place that she described as “prison” or “hell on earth” – I have visited someone else in another “hospital” just like the one described below – here is the description of this place: entitled “visited relative tribunal”
“I had to go there because my relative had a tribunal. –
The security precautions are worthy of a prison, very depressing, even the Judge said that sometimes in these places she cannot do her work because they take her laptop from her . I nearly had an argument with the people who removed all my possessions as I went in. The actual staff on the ward were very nice, I think it is just the regulations, so restricting they cannot possibly be conducive to recovery. My relative has completely withdrawn, I feel that the psychiatric system itself is wrong, has made his condition worse. Always presupposing the worst, more likely to get it. My relative is stuck in there unable to go out unable to draw out any money, begging me for money, which I cannot afford. Supposed to be rehabilitation but the people aren’t allowed to go online/have a mobile phone or tablet. Maybe they have some real hard cases in there, for whom these restrictions are designed but my relative is not a criminal or dangerous – has the misfortune to be banged up with those who might be. The grounds etc. all very nice but apparently no one is allowed out in them. I would not like to work in that place or to be in there. Ward staff as I said doing their best and in spite of everything managed to remain cheerful and positive.”
Visited in October 2014 – Posted on 17 October 2014.
You would think that a person put in this kind of place has killed or done something terrible but I can prove there are many cases where this does not apply at all and patients are just left to go downhill. I am most disturbed at this so called expert who claims in the file not to know my family so well but passes my complaint to the department I have complained about feels “sure” that this very hospital mentioned above would suit Elizabeth.
There are lots of places like this in the UK. Beautiful grounds which are not being used and facilities whilst patients are locked up on the wards and drugged up to their necks, often they are miles away from their families who cannot visit and no help is given to the families if they cannot afford to visit. It is not the answer to have someone on the wards like this – many are admitted simply because they cannot manage in the community – what kind of country allows this to go on? Hospitals such as these are just dumping grounds and very hard to get someone out as I have discovered even when of no risk to self or others as I have proven. And as for the files – they are a disgrace – here staff come out and write behind your back the most nasty comments and get away with it as they all stick together . I have seen that there is a culture of bullying in a system that is failing to protect the weak and vulnerable.
If a care home cost £60000 a year God knows what a hospital like this would cost and it is no wonder why they do not wish to let people go as they are raking in the money – it is big business. With this vast waste of public money it is no wonder why the NHS does not have funding for vital services that affect everyone and A&Es are being closed down, plus other things that affect everyone. Vast sums of money are also being wasted on maximum enormous amounts of concomitantly prescribed drugs to psychiatric patients as well as court fees – long drawn out tribunals and solicitors are doing well out of it – many do not come near or visit someone vulnerable and I have seen the most unprofessional behaviour on the parts of solicitors which I will explain later.
With the forthcoming elections, I want to know what each of the political parties propose to do about this unsatisfactory situation. I will be posting this blog and more comments later to all the political parties as I propose to take Elizabeth to vote in the forthcoming elections. I would like to see an end to the abuse going on and an end to ECT and forced drugging – proper assessments and before prescription of drugs looking at metabolism in depth and whether there are in fact physical conditions – assessments are not being properly carried out.
I do not have time to write further right now as I have to take Elizabeth for an appointment and then we are going to see the show “Sunny Afternoon” which I will tell you all about later
It’s Easter, my favourite time of the year and I’m so happy. No longer do we have to plan around Easter, allowing for long journeys in the car going down to Wales or to the area where the care home was situated. Its so good to be together as a family and I know Elizabeth is happy as she has told me many many times “I am so happy to be at home, Mum”. It has never been a problem to me to have to care for someone as I have had to many times in the past – my mother with cancer, my father with Alzheimers, my younger daughter who did not want to live at one time was diagnosed wrongly with Schizophrenia, however my younger daughter is extremely busy and is hardly at home as she is always working. My younger daughter went from strength to strength starting with a small local school I paid for in a different area which was the “cure” – she was so lucky to go to a boarding school for performing arts and then on to University. After graduating from university she has set up her own company. My proudest moment is yet to come as a mother when my younger daughter comes with me to an important event, in order to support all the mothers who have sons and daughters locked away unnecessarily. I am proof that it can be done – to all the Mums and Dads out there it is not impossible to have someone back at home =- someone who is written off as having no hope has suddenly made huge improvements being in the right environment which is home. A member of the Home Treatment team said that home was the “best place” however sadly I have read that this same member has said other not so nice things in the files.
I have had a chance to study these today and it appears that it was thought Elizabeth would be best off in a hospital environment by someone who I believe is from the “management team” with no medical qualifications and two such places were being considered, the Priory and Kneesworth Hospital. The Priory is the one situated in Hertfordshire. Well I wanted her to go to this hospital myself and was prepared to pay but not this branch – one more local to home and they refused flatly to take Elizabeth saying it was a “complicated case” and I was prepared to pay myself. I see no complications myself. Elizabeth’s case is straightforward in my opinion. Yes she has been in and out of hospital but at the age of 28 now she is home there are no problems and I put everything down to the concoction of concomitantly prescribed mind altering chemicals which I cannot bring myself to call “medication”. Never before was there a problem with Elizabeth until she was prescribed Prozac (Cipralex). Elizabeth’s sister to my horror and against my wishes was prescribed Rispieridone. I had always warned both girls to never take drugs but never did I think that a doctor would be so quick to prescribe these drugs and push them onto someone vulnerable without proper tests to check on metabolism. Call that naieve but I knew nothing about the horrors of what is going on in the UK but now I do. Now I have researched matters I can see clearly – having head of DSM 5 there is a diagnosis in there for absolutely everyone – all for the profit of the pharmaceutical industry. I would not accept one single diagnosis in this book myself and believe that it should be scrapped,.
Anyway Elizabeth has spent time with the rest of the family today which has given me time to tidy up and do housework. I have sorted out paperwork and filing – I have so little time to do all of this now Elizabeth is home. I am so happy that I have time to spend with her this weekend. Tomorrow I will take Elizabeth shopping locally and I would like to see the show “Sunny Afternoon” – I have no idea whether I will be able to get tickets as they will be in big demand this weekend.
Having time to myself has enabled me to do some reading today – my new book is brilliant called “Unsafe at Any Dose” by a consultant psychiatrist I thoroughly agree with – Dr Bob Johnson – you deserve the highest award. I have also been looking at the medical notes the team were so desperate for me not to see. They certainly make interesting reading and whilst I am just a mother I could not resist researching things further. The previous Neurologist has written interesting points that has led me to look into matters further and question certain things.
The new Neurologist I have appointed has complimented me on being a “very good mother”. However this is in stark contrast to what I have been described by the team. I will explain further another time but it is Easter and I do not wish to bother myself with unpleasant issues and I will reserve all unpleasantness for another time as I am too happy to wish to write about this today.
So Elections are forthcoming – which Government is going to do something positive – HOW ABOUT AN END TO ENFORCED DRUGGING AND ECT FOR A START. RELEASE THOSE MANY OF WHOM ARE NOT DANGEROUS FROM HOSPITAL. I will be taking Elizabeth to vote but I do not see any Government doing anything outstanding regarding mental health care and the scandal of so many people being written off and lost in the cruel system of the UK that is failing so many (because it is all about drugging and nothing much else) lack of support in the community, I would like to say that I am proof that there is hope that some young people can return home – a much cheaper option to the taxpayer and I have been without any help for the past year. Elizabeth may be on a drug that needs monitoring however I see her as a 28 year old adult and treat her like a person, not an object/possession – she has come out of the system disabled however I believe here is still hope for Elizabeth and am shocked by the way she is written off in the files.
Meanwhile, we thought the transfer of care had gone ahead as Elizabeth and my carers have not wanted to attend meetings. I am backing my carers and Elizabeth. There are many things wrong in the files that need to be amended and some things too disturbing to put on my blog- Elizabeth has seen the files and is not happy. I would agree that these files are highly inaccurate. When very nasty comments are made about certain members of the family I feel it is only fair that they they should be appropriately amended. Who can blame my carers when they have been called hostile and aggressive. I am not so sensitive as I knew what to expect however I have to safeguard my carers and Elizabeth from things that are not true/nasty personal comments When I had to call the police to report harassment myself the police woman said “you have a very nice home Ms Bevis” “you are a very good mother, Ms Bevis said the new Neurologist” – it is good to hear that some people can report the truth.
Anyway Elizabeth is here with me now “I have had a very good day with my Grandma and Grandad and father. I am looking forward to seeing the show “Sunny Afternoon” with my mother. On Easter Monday we may go and see where my sister is working. I am very happy to be at home this Easter.” “Happy Easter everyone and thank you all for your support”
My views on mental health care in the UK are based on personal experience and I am in touch with a lot of people who are suffering right now who have their sons/daughters under the UK’s unfair system where they remain in hospitals and care homes for so many years on end and become disabled and then the excuse is risk to self when all that is needed is more support and for a team to work with the family in a fair manner and for psychiatrists to take note of the harm they are doing by giving maximum levels of drugs in care establishments and to understand why a parent would wish to see their son/daughter on minimal amounts of drugs when it is proven that there are physical health conditions. However all you get is dismissal and exclusion if you dare to request this.
Degrading Treatment – which is commonplace in the UK
I have not only seen this but experienced it myself.
Distressed patients waiting outside nurses’ offices for a long time and the way you are treated if you dare to complain. I have witnessed more than once professionals smiling at meetings. If you show emotion, you end up getting labelled yourself. Psychiatry does not recognise emotions – this is where they go wrong in my opinion – emotions are seen as symptoms of illness instead of helping someone who has suffered trauma, drugs are given at high levels which is no cure at all. I was never imagining things or being delusional when Elizabeth and I were being harassed a while back -now that I have acquired the files I can see why the team did not wish for me to see them. The team were visiting for a purpose to report everything that mother said and this they certainly have done to their credit in the files in a nasty manner. Comments were not just confined to me but to my carers and also to Elizabeth which is awful in my opinion. By all means go ahead and say what you like about me but why pick on my daughter and my carers. The contents of these files go on to be read by other professionals who are influenced by them “we have heard all about your past behaviour” it is like a diagnosis – once given a label sticks for life and there is preference given by the bulk of the team – many of whom are not medically trained to just one of say 5 diagnoses with disregard to whether the label is accurate or not. It is like having a life sentence. Whilst some may be happy with a label there are others who are not like Elizabeth. All these stigma campaigns are never going to do anything good whilst the system allows for someone to be treated in this way – stigma campaigns are only directed at the public but how about looking at the reality of how patients are treated in the care system itself.
The words “angry” “aggressive” “hostile” are favourite words of professionals that they like to use constantly in the files but there are other much more disturbing things – some too disturbing to put on this blog which I want a full investigation into. It is easy to write behind someone’s back – how many bother to get the files and this is made extremely difficult. If a patient originally consents to this the team will change this “you don’t want your mother to see the files” – in actual fact it is the team who do not wish that mother to see the files for obvious reasons and now I have and I am neither shocked or surprised by their contents. It is good to know which members of staff are saying certain things about you behind your back and I should feel flattered that I am regarded as a “special case” however I feel this status discriminates against other patients who need attention and who are ignored. A special case is when there is money or jobs involved – £60000 care home fees. A CTO about to be organised costing/needing more funding of public money. A special case relates to anything that has court proceedings when anything said or done can be used against you in court by the team as again it costs thousands to take you to court. Deprivation of Liberty is not being handled well and patients are not being treated fairly. To withdraw “treatment” is to try and force return a patient back into care where it was planned to place a section upon that person. Instead of working with the family they work against the family. Instead of understanding they bully and harrass.
We spent hours and hours waiting for professionals to help at local level but were told to take her back to the care home in order to get the drugs. I was afraid my daughter would suffer injury so I ordered a cab to take Elizabeth to Harley Street as no one cared locally. In Harley Street you can get to see a consultant psychiatrist immediately however none could help me re the Clozapine so I contacted Novartis and they could not help either. In the end I have to contact solicitors as I felt her life was being put at risk by professionals. I may not be happy with the drugging of my daughter but I know that you cannot just stop taking the drugs. The team ignore physical illness for instance – there is no genetic links to kidney disease in the family. There are other disturbing things too in this respect. Past family history is incorrect. Everything I thought was going on has been confirmed so I cannot be accused of imagining things. If something serious has occurred under care this recorded as “Delusions” . I am disappointed in the Police – I am not impressed with certain comments. I am disappointed with the legal profession as I do not feel they care for anything much apart from their expenses. I am disappointed in the whole system as there is no backing for someone like myself in the court system. My own experience of Ct of Protection is good but when you read the shocking contents of the files which are highly inaccurate, when presented to Court who will be believed especially when the entire team can write what they like about you behind your back in a nasty way. Complaints are dealt with unfairly as they investigate themselves so when the complaint goes further up to say the PHSO for instance or the CQC who is going to believe a mother or a patient in preference to the entire team who stick together like glue to protect one another.
My main concerns just like other mothers is the huge level of drugs being prescribed to young vulnerable patients in hospitals and care homes. When someone is so drugged up they are too ill to contact solicitors and are at the mercy of professionals who ignore physical health. I have seen the comments in the files “optimise the drugs!” from a Neurologist going back to when my daughter was originally under local “care”.
I am sorry for mothers/parents who wish to get their sons/daughters out of the system but cannot as professionals play on risk factors and some of the parents have to been able to find a firm of solicitors willing to help them. Some have been in the system for years on end and are being deprived of phones and contact with families, leave etc . Some have developed serious physical conditions as a result of the huge amounts of drugs given and there is no accountability in the UK – I know of several cases. Certain professionals it would seem are above the law.
Elizabeth is improving at home now because she is being treated like a normal person and encouraged to do things for herself she is getting better and I have a wonderful trainer/nutritionist who comes to the house twice a week. She needs prompting to do basic things and could not manage on her own 24 hrs but that is no excuse to keep her stuck in the care system for years and years on end to the point of complete disablement with destruction of her physical health due to huge amounts of drugs given.
When Elizabeth first came home she did not want to go out . All the time she would cling to my arm and that of my carers – sometimes it was impossible to get her to come out and she was ill at the thought of going out. She is getting better now thanks to being in the right environment.
Whilst at the care home we took her to Woburn Abbey – Elizabeth could not sit in he café for long and could not enjoy the day out. Same applied to when I took her to Big Feastival – Elizabeth was not well and wanted to go home on arrival. Now things are different – I am able to take Elizabeth out to London and in crowds. She is walking better now and has proven that she is not an entirely hopeless case. How many more young people are treated like this? Well I am in touch with parents who are extremely upset as their sons/daughters are stuck in hospitals and care homes a long distance from home and being drugged up to their necks. Professionals are abusing patients’ human rights and huge sums of money are being wasted by keeping someone in hospital long term or care homes instead of helping families. £61 does not go far on carers allowance and should be increased. Direct payments should be given to families – this worked well with my father who had Alzheimers. When everything about home and family is written about behind your back in the most nasty way how can you trust the professionals? When consultant psychiatrists do not wish to see you or speak to you on the telephone – I do not think this is good at all and this shows that they do not care. I do not think that managers or non medically trained professionals should be as involved as they are in terms of “medication” to the point they themselves push the drugs to patients. I therefore do not agree with integrated care as I have seen that total disregard has been given to the wellbeing of my daughter by non medical personnel who have a lot of power – power to take you to court and sever contact. – power to put someone back on section even though they are doing well and this I would call abuse. I would also call this a waste of public money.
Some contradictory Points:
In a letter addressed to me, following my written concerns regarding “medication” given at high levels – here is the response from a service manager.
“You are certainly right in emphasising that medications can have side effects and that the dosage should be reduced to the lowest level. A psychiatrist treating a patient will explain possible side effects and will help a patient who has mental capacity make an informed decision about their treatment”
He continues in saying “I am satisfied that this process is being followed with regard to present anti-psychotic medication.”
My response: You are not a doctor and how can you be satisfied especial with the maximum drugs given to my daughter?
He then talks about mental capacity: I would agree with the following points:
“For someone to be classed as seriously incapacitated they would normally be very severely handicapped and incapable of feeding themselves for instance”.
I recently got slated on social media for using the word “handicapped” – well in the case of my father I pointed out he was severely handicapped in the later stages of Alzheimers – I fail to see what is so offensive about this when I have seen the most shocking things directed at me as a mother and my daughter in the files.
I would comment that capacity can be played upon – for instance huge levels of drugs as are given on the acute wards can destroy thinking ability – when it suits them a team can say that someone has or hasn’t got capacity but Elizabeth did not want the capacity assessment as she was not feeling too good it is assumed she does not have capacity when all along this without doubt. Deprivation of Liberty was used to try and force her back into care and to sever contact with me.
The service Manager talks about Physical Health and the importance of regular physical checks/contacting the GP – all well and good but I would like to see this service manager cope on huge dosage Quetiapine – maximum 800mg and other chemicals on top of this – I was shocked to see that Elizabeth was given even more chemicals on top of this such as Haloperidal and Chlonazepam. It would appear the team have not properly read the files and it is a good job that I as Nearest Relative have acquired them as I am looking after my daughter’s physical health and when these professionals talk about “best interests” – it certainly is the best interest that Elizabeth has come home – at least I am not dishing out Lorazepam and contra indicated drugs constantly Even the GP in Wales did not know why she was put on the Metformine.
As a carer/parent you are excluded – confidentiality and capacity played upon so as to deny access to any information and this can be done to cover things up. I have been looking into capacity as this really interests me – capacity is the ability to make choice. This would apply in Elizabeth’s case and she certainly did make a good choice to come home and has had the capacity to tell me all about the coercion going on at the care home. My father with Alzheimers in the later stages was regarded as someone who had no capacity however I knew that he could understand some things – just because my father could not communicate effectively, emotionally he showed signs of understanding when once a nurse stood over his hospital bed discussing delaying of his release from hospital.
Writing someone off:
The trouble is with the care system in the UK many young people are currently being “written off” – when someone like Elizabeth is labelled “treatment resistant” they are not given hope or encouragement and left with little/no support in the community. It is wrong to write someone off as being beyond help and dismiss emotions and what may have happened to that person. It is not a case of shortage of beds – it is a case of wrong treatment. The very fact that there is a shortage of beds means that the treatment is wrong.
At home Elizabeth is safe and happy. It is insulting to see how she has been described in the files. Elizabeth sometimes needs prompting but will always get on and do her own washing/ironing. She can cook basic things. She is gradually gaining confidence thanks to the personal trainer who comes to the house twice a week. Elizabeth suffers from Agoraphobia but despite this I manage to take her out but she is too afraid to go out alone. I hope she will eventually as there are so many nice things around this area all within walking Studio nearby and another gym that is closer. The trainer took her out today. No help is given to the family but £60000 and more is being saved to the taxpayer.
Where Elizabeth has gained weight – the drugs are notorious for weight gain, I try and get in very healthy food. We went shopping in East London and Elizabeth bought some very nice clothes. On Sunday Elizabeth did not want to go out at all so we had a restful day at home.
Taking Elizabeth out with me into London to an exhibition. Hoping to meet former patients./survivors.
I try to make the most of my time with Elizabeth at the weekends to encourage her to go out and regain her confidence – by meeting former remarkable patients who are getting on with their lives is wonderful inspiration and by going to the courses/conferences and listening to decent professionals speak gives us hope that one day the Government will take notice and do something like raise carers allowance and ban ECT and huge levels of drugs being forced on patients long term and recognising that there should be choice and decent care that is based on holistic/therapeutic /nutrition just like Chy Sawel wish to offer. I would like to see politicians attend the forthcoming Maudsley Debates. Elizabeth and her sister will be with me on this occasion and there will be other mothers going too who wish to see action and not just words.
Today I’m am very happy – it’s Mother’s Day in the UK. What better gift could I have but my daughter Elizabeth being home again after so many years. I’ve been thinking today of all the mothers and people who have relatives currently held prisoner under the cruel MH system of the UK, a system that you cannot easily get them out of. The public are unaware of this as it is not being reported. I am in touch with many people in this sad situation where sons/daughters are sent hundreds of miles away – in some cases they are not allowed phones to stay in contact. The way families are treated is terrible in the UK and when I have spoken to such parents they are heartbroken – many cannot afford to visit very often, bearing in mind distance. It was not easy for me – Elizabeth was sent to Wales and you cannot just get in the car and drive down for the day there. Not only was it expensive but there was not one ounce of help in terms of advocacy. Once someone is moved away from home and family, they are put in a situation where there is strict control in a coercive environment. The patients are not cases where they have killed someone, they are cases where someone cannot cope in the community and need extra help. The mothers and families are people who care and are desperately unhappy. The Government pays only £61.35 for Carers Allowance under a hospital thousands of pounds are being spent a week. Under a care home £1150 per week. I do not know how much extra it is to put someone on a CTO in order to force them to take drugs for the rest of their lives. All of this is going on whilst A&Es and maternity units and other things that affect everyone are being cut under the NHS.
I am getting more and more letters and have spoken to several parents/husbands etc who are at their wits end. I am finding that what I was faced with is commonplace.
The other area where huge sums of money being wasted is under the legal sector.
If you are a Nearest Relative you can overturn a section. First of all the patient has a Tribunal – quite often this will fail. As the Nearest Relative you can appoint solicitors paid for by legal aid at this level. You have to go through a Manager’s Hearing first but at the Manager’s Hearing they refused to release the files to my solicitors. This did not go ahead. I meanwhile had arranged with a nicer psychiatrist who was covering duties for tests to be done for Dr William Walsh. I had arranged for these tests to be carried out at the Bio Lab and of course they came back showing significant decline in terms of physical health. Tests such as these are not cheap and the team are quick to dismiss them as they do not care about physical health and like to concentrate on maximum drugging. So Elizabeth said she was unhappy – eventually an independent psychiatrist was appointment – the choice being that of the Nearest Relative. Being so drugged up in this private sector hospital, not seeing the family regularly, it was difficult for things to progress quickly. Elizabeth’s solicitor should have visited her and helped her but I did not think that was the case. Things just became long and drawn out and the more correspondence involved the more expense at all at public expense. This is where the money is going.
Under the Court of Protection where a Council can deprive liberty stating the patient to have no capacity, you get no representation in court. It costs about £800-£900 a week if you have a job and home to provide your own solicitor. I do not think it is a fair system at all. For a family to have a child or vulnerable person taken away is terrible and so is it terrible for families to have someone stuck in the system when the parents are decent and care – in instances where the patient may have reacted badly to drugs in the past and I am talking about prescribed drugs. Not everyone has taken illicit drugs to get themselves into the situation of being admitted to acute wards. Not everyone has abusive parents. Most have suffered some form of trauma and being on a noisy overcrowded ward is untherapeutic and can affect someone’s behaviour. I never want to see Elizabeth back on any acute wards again as I know these are places where psychiatrists dish out drugs at huge levels and I can see that this kind of place just resulted in Elizabeth becoming worse. Since being home, her behaviour has been completely normal but disabled due to being on last resort Clozapine which is far from a wonder drug in my opinion. I have read the files of shocking content with Elizabeth who has a right to know. Even past history recorded in the files is wrong. The words “hostile” and “aggressive” are frequently used out of context – when something goes wrong this is covered up – if you complain or show any kind of emotion you get labelled yourself. Never have I ever threatened violence to the team but that does not stop them from labelling you as they so wish. There are things missing and other things I did not expect to find amongst the files. I have requested certain papers that are missing and have been refused them. To get rid of a Nearest Relative can be a convenient way of covering things up when there are serious things to hide.
Taxpayer’s money is being wasted, vulnerable people are kept for years on end incarcerated in hospitals and care homes. They are being drugged excessively and end up being disabled.
If the Government were to give more money to individual carers that would be good but £61.35 does not compare with the cost of a care home or private sector hospital for instance. Diabetes is a condition caused by the drugs, Parkinsons disease and blood disorders. I suppose keeping someone away from their families is a way of safeguarding themselves for when things go wrong. If someone does become injured as a result of care the legal profession does not want to know. I do not think the legal profession is treating vulnerable patients fairly – it is wrong that a hospital should recommend either advocates or solicitors.
I do not think it fair that there is no legal aid representation at higher level in courts especially in cases such as Deprivation of Liberty and severing of contact with a family member.
I think the complaints system is wrong as I have seen at first hand how they investigate themselves. Who is going to question these professionals when they stick together like glue and make you out to be a terrible person all behind your back.
The Council has cut funding for the local Carers Centre but they have no end of funding for “special” cases – “go in twos – report everything that mother says”. All this, when there are some people who would like attention.
I wish we had a fairer system in the UK such as Open Dialogue.
I wish we had a National Metabolizing Scheme – it is all very well saying “risk to self or others” being the criteria for release from section but most important of all, underlying physical health problems are ignored – if someone is chronic treatment resistant – this means poor or non metabolizer – the treatment being given could be doing more harm than good and only experts who are familiar with the drugs themselves should be allowed to prescribe them. I was appalled that doctors had not heard of the tests I wanted to have done (P450 liver enzyme) and I came to the conclusion that many were not up to date with their knowledge. What do they know about adverse drug reactions ?- drugging of patients is being done as a means of convenience/control with total disregard for physical health. They are driven by blind ideology. Many do not even know how the drugs work. To prove capacity under Court of Protection once again an independent psychiatrist is appointed – must cost thousands for a report to be prepared on top of the court fees. The correct regimen for administering psychopharmaceutical medication is by titrating to a minimum therapeutic dose, not only to protect the patient but to reduce the cost of treatment.
Degrading treatment against mental health human rights seems to be commonplace. The withholding of drugs is in breach of Article 3.
Kucheruk v Ukraine (2007) ECHR No. 2570/04 6 December – lack of adequate medical treatment and lack of adequate investigation into the applicant’s complaints of ill-treatment. (The person investigating the complaint passes it to the department the complaint is against, the complaint is investigated by themselves) all of this very relevant in Elizabeth’s case.
Being at home has meant that I can share all the nice things with Elizabeth such as wonderful shows and we went to see the brilliant show “Once” last night which we both enjoyed. We have seen two other shows recently and I want to go and see “Beautiful” again. Yesterday we met with former patients and today we have been to the cinema to watch the sequel of Marigold Hotel – a very good film.
It is cheaper to pay more Carers Allowance than put someone in care and more thought should be given to this by the Government.