My website is dedicated to my 27 year old daughter who, after years of hospitalisation is back home again as she did not want to return to the care home who were asking her to choose between her Mum and Dad as “next of kin”. I have welcomed Elizabeth home again and she is improving since being home and is not on such a huge quantity of drugs which we were unaware she was on and this had been going on for some time so I have just found out.

Elizabeth I now recognise as having had severe adverse reactions to some of the drugs – in the files she is stated as being “treatment resistant” and I have since found out this is where someone cannot metabolize the drugs and in addition to campaigning for more humane mental health care I would like to see a proper National Drug Metabolizing Scheme as the drugs could be doing more harm than good not just for Elizabeth but for everyone. I understand there is a programme in Liverpool going on but I think there should be a nationwide programme as this could save money to the NHS as well as protect patients from harm to their physical health if the drugs given are wrong for them.

At home Elizabeth does not have to take Lorazepam as and when required whereas at the care home – she has her cat and this is more therapeutic than all the drugs in the world.

Elizabeth can manage in the home and has not forgotten things learned during catering course. However she needs to rebuild her confidence in going out. This is something I believe only a group of young people of around her own age could help with. It is not a matter of qualifications – it is a matter of understanding and caring. I would like Elizabeth to make decent friends and have a life and since being at home there has been no sign of any wrong behaviour. I think also nutrition and exercise are very important and minimal drugs.

I also think that Open Dialogue would be the best way forward as they have 95% success rate in Finland and patients can be on minimal amounts of drugs.

I think that CTOs and enforced drugging should be replaced by Open Dialogue and the National Drug Metabolizing Programme as someone could be having an adverse reaction to the drugs which is mistaken wrongly for “symptoms”. The most accurate of diagnoses given is PTSD – however this is being ignored by the entire team and according to NICE Guidelines Clozapine is the wrong treatment for PTSD.

I would like to see change in the current system which is completely inhumane.  No proper assessment are done and why should patients have a lifetime of drugging –  where is the proof of these diagnoses in any case as I have seen so many different ones in the files.  I would like to see facilities such as Chy Sawel set up offering choice to patients and facilities where patients who cannot metabolise the drugs can be safely reduced.  The minimal amount of drugs should be given but unfortunately in the UK it is the other way round.  Whilst A&Es and maternity wards are being closed down the mental health wards are overflowing and I have seen the same patients return time and time again and that is because a patient needs more support in the community and down to the mind altering drugs in some cases and adverse reactions to these that are completely overlooked.   Physical health is also overlooked too and should be paramount.

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19 comments
  1. Emily said:

    Hi, I stumbled on your blog. I want to fight for my Mother who was irrevocably abused and hurt in a mental ward. She has been mentally ill for 30 years. I read your article about the world needing heroes. Yes, if does. It is so painful for me to face and to write about. I need to start somewhere. God is telling me to do something. Thanks for the encouraging read. -somebody who lost a parent

    • sbev2013 said:

      Thank you so much for your kind comments. I often feature guest bloggers and you are more than welcome to write about your mothers shocking abuse on this blog. It important to get the message across to the world and show how vulnerable people are treated. My father who had Alzheimer’s was put on enormous amounts of mind altering drugs through his GP. I have featured this. rispiriedon and quetiapine – there are others affected in my family who I do not write about but I cannot bring myself to take any drugs and have just proven that it is no good to just prescribe without proper tests which I have now had done which reveal “poor/non metaboliser”. Thee team like to stick with one label and not investigate others that are in question but Elizabeth is now disabled and cannot work – too afraid to go out and left on the scrap heap. It is shocking to see how Elizabeth and the family have been written about in the files and I feel like featuring this as this sort of thing should not go on . No wonder the team did not want me to see the files – everything I post goes on Twitter I am more than happy to feature others who are likewise suffering from abuse under the shocking care system of the UK

  2. AbI said:

    Hi MY name is AbI I’ve had very similar experiencesearches to your daughter

    I was originally in a residential care home in Barnsley for adults with mental illness learning disabilities & physical disabilities in the village of great Houghton Barnsley south Yorkshire ..I was on section 3 of the MHA funded by two separate primary care trusts ..I was taken of section 3 by the care home psychiatrist & placed on section 117 A whereview all my problems began when I moved to a different area to Leicestershire as I married another care home resident in Barnsley ..We moved to Leicestershire In January 2010 ..I also learnt to email in the same year …I have a learning disability & Orhinally I was diagnosed with paranoid schizophrenia I was in A number of psychiatric institutions myself starting in my home area of West Midlands to Warwickshire I spent a total of 30 years in various institutions around the UK..Also in Northampton in ATU and in Sheffield ..My experiences in ATU units where horrendous & horrible..what what Winterbourne view hospital scandal they had we had exactly the same treatment at the big private hospital in St Andrews in Northampton..Awful place ..Worst hospital I was ever sent to on section 3 ..My NHS ones that have since closed down in Warwickshire where the best the nurses treated us all really well I was their for eighteen years ..I had no bad experiences their..But in private psychiatric institutions they are run like cell block H ..We get sent their because they are longer term not everyone in those awful places has a criminal record..I didn’t have a forensic history yet they sent me to that awful dreded place ..In Sheffield the ATU was a lot better the staff treated us really well I had a far better experience in south your Yorkshire ..Than I did at St Andrews hospital in Northampton ..I liked it at my care home to ..But the abuse All came back when we moved yet to a new area we didn’t even know ..Nor had I been to Leicestershire before..I knew knowone apart from my husband who was living with me …I Was abuse by A local community. Mental health team they made lies up about me Refused me any therapy Took me of my antipychotic medication olanzapine velotab ..That I’d be on for fifteen years ..my diagnosis had changed while at the care home to border lime personality disorder even though they where not sure if I’d got it they slapped it on my records anyway . I Don’t smoke I never have ..I don’t take illegal drugs & never have I don’t self harm either..My parents thought it was a easy diagnosis for my mental health trust in Warwickshire to get out of funding me ..The home care services we had Used to say we didn’t look like we had got a learning disability even though I. Have triple xxx 47 syndrome and a developmental delay and epilepsy..amongst other things too ..THE CMHT Just passed me from pillar to post They didn’t want to know me .I ended up on safeguarding as a vulnerable adults the police where brilliant As I was on police safeguarding for over 2 years .because of the two Community mental health teams passing the buck this seemed never ending ..TWO solicitors got involved but I couldn’t cope with it all it toll on my mental state I was refused any psychology even from the time I was first referred to them in summer 2012 ..Four years with no pychology no therapy what so ever they kept refusing me ..So what are you supposed to do when they keep saying your not ready for it ..Recently I was referred back to them under a different diagnosis ..I now got a new psychiatrist he was no better than the last ignorant one who had recently left the partnership trust because of failings with the local pycychiactric hospital that’s been on the news more times last year than any other mental health trust ..Through failings…of people mental care ..But still the new team that have took over are no better..The new psychiatrist threatend to discharge me back to Warwickshire if I refused a anti psychotic drug that he thinks I need bear in mind the the previous team said I didn’t need them and now this new one wants me back on a drug I don’t even need ..They are going against the NHS guidelines drugging adults with learning disabilities Up is Against the regulations if they have full mental capacity which in the room the social worker who was at the appointment with the psychiatrist said I had full mental capacity so I said I don’t have to take them then ….He said well your still not ready for psychology..I said thats the same type of excuse the previous team was using in this same building..I said four years with no psychology when will I be ready then ..I also then said never …He said if you don’t take i will discharge you….I knew that what he said was illegal..A mental health psychiatrist is not aLlowed to force a service user on section 117 A who had full mental capacity to take medication if they choose not to take it ..But threatening to discharge them is also unlawful ..I’m still on section 117 A but in a different area ..As I wasn’t sectioned in Leicestershire ….I’m also moving to another area because Leicestershire is the worse place I’ve ever been living in ..Abuse happens I had nothing but abuse and bullying from this NHS trust ..Even now I’m off safeguarding they are still carrying on with unlawful practices ..when will people stand up to thsee corrupt NHS mental health services in the UK..Some our really good But others are I’m afraid full of corruption like the place where I’m living at the moment ..I’m sorry that you have had Bad experiences too ..MY advice Is you don’t need to put up with it ..I don’t….I’m moving away to get away from these people ..They sent me a letter Discharging me from their team ….My family our discussed with their letter ..My parents work in the NHS ..They don’t agree with this Authorities policies.. I hope you keep fightimg for your daughters legal rights..Don’t back down..I’m moving Too ….You don’t need to stand to their kind of behaviour …I wish you the best of lUck ..kind regards Abi H

    • I am so sad to read your comments Abi that such abuse is so widespread under the NHS and they get away with it in most cases. We as a family have our complaint being looked at right now by the Deputy Director of Quality of the NHS. Up until now complaints have been answered by the very team who the complaint is about “you know the family better than me” . None of them know the family and even past “history” is incorrect in the files. One something is mentioned in the files like say an art therapist labelling you as being mentally ill this cannot be altered apparently. What is shocking is trying to involve your GP in getting a MHA assessment done and all because you dare to stand up to them. I wish to move too Abi. I have lived in my local area of ENFIELD all my life but now am no longer happy but where on earth in this Country can you move in order to get decent humane care and kindness – is there anywhere in the UK? We have been refused to take part in the Open Dialogue Scheme run by North East London NHS Trust but apparently there is a private open dialogue scheme called Open Dialogue Approach. All my daughter has ever wanted was fair treatment but instead she has been pulled in two directions by professionals who wish to make her choose between parents, sever contact, who play on confidentiality and capacity when it suits themselves. They have actually brought my family closer together in disgust having read their comments in the files. I never once thought that people who are employed in care could be so ruthless but now I have seen and read it all witnessed by many people who stepped in to help me when Elizabeth was deprived the drug Clozapine for four days. Everyone was horrified.

  3. Abi said:

    THANK YOU for your reply To my comment about your daughter ..Hi from abi ..Far to many failings with the system…Many mental health services lack care or compassion & I’m sorry to say these individuals shouldn’t be working in the NHS or social care if they couldn’t care less about other people …Their have been some genuinely good people I’ve previous met in mental health services ..But I’m afraid my expectations & Experiences of community mental health services has been poor to say the least …I have had dreadful experiences since living here..I’m not from this area nor out my parents ..Nor our my own friends ..what I will point out ..I have a really Good Gp practice in Leicestershire & all the staff are really nice ..But The mental health team ..Frankly that place should be shut down..I get on a lot better with the shop keepers in the centre of Wigston..They are far more approachable than the mental health team..Even Leicestershire police ..They have a far better understanding of me than the dreded clowns that are working for the mental health team that are not suitable to be in the job in the first place..I’ve heard many people who are under that team say the similar types of things to me ..Many people are treated ver6 badly with mental health or learning disabilities ..Lack of understanding of their disabilities ..Psychiatrists not even recognising someone has a learning disability ..They even did this to my husband ..He went to see a psychiatrist couple of years ago she’s supposed to be a learning disability Psychiatrist .At a different team in Leicester ..She had apparently told my other half in front of his support worker that she didn’t think he had a learning disability anymore she reckoned or had completely disappeared..His shocked support worker who was with him at that time ..Was left somewhat stunned by this so was my other half….When he got back to tell me I thought he was at first joking..we told his authority what Leicester had said that him ..A learning disability you are born with it never goes away never mind what Leicestershire paetnership trust are saying they are absolutely crazy .My own family where far from pleased either nor was my other halves family In Another area of UK..His own Team where furious..They didn’t agree with Leicestershire either ….It amazes me how they can pass these people as consultant Psychiatrists ..It seems Leicestershire Psychiatrists are born clueless…..Even I know a learning disability doesn’t disapear .Try telling Leicestershire site call medical professionals this ..? TRY reasoning with them ..It’s impossible ..Who ever employs these medical people needs their heads testing ..Some of the social workers are not That good either..They have no learning disabilities social workers & Not many have any experience in Triple xxx syndrome …It’s a rare genetic chromosome disorder that only females are born with ..It effects me bad ..but in different ways ..It’s a hidden disability ..Yet again…..Most learning disabilities are ..I’m unable to catch buses or trains ..I can’t cook either But I’ can email and speak OK…..I never had been able to catch a bus or train..It’s not because of me being lazy it’s due to the type of disability I have ..Only Leicestershire are the ones who don’t understand that..Even though my own family and a previous team I was under in Warwickshire did explain all this …It seems Leicester have already forgot or mislaid the records of this in from my previous CPN I was under who I got on well with ..I had her involved for eighteen years till 2012 when she was made redundant from Ashton house in Warwickshire they where the best team I was actually under ..
    THE WORST TEAM WAS IN 2013 WHEN I WAS UNDER ST MARY’S LODGE in Warwickshire while living in Leicestershire and cedar centre in Leicestershire ..Those two teams where the worst ever teams ..But Ashton house Mental health outreach team That was a CHMT but not run like cedar centre or at Mary’s lodge …I had far better outcomes in that team I was previously under a
    & MyCPN I was under for eighteen years tI’ll three years ago .I wish I’d still been under them but they made my CPN redundant..I miss such a good team …I HAD A FAR BETTER UNDERSTANDING OF MY NEEDS…THE STAFF WHERE BRILLIANT ..Even my own family got on well with them they would always call me back or visit me …But times have changed & I’m glad in a way I’ve been discared from Leicestershire I’m still on section 117 A ..But under no team in Leicestershire ..They did me a favour in one way at least I don’t have to put up with their bullying and humiliation anymore..When I move i will be under a different area I’m moving in with my other half..He’s already in a new place ..I hope to be moving soon …I hope one day that the Mental health haa better funding and looks at the way it treats people..Stigmatisation and humiliation has no place in our NHS stamp it out ..Stand together us services users and our families …Their is far to much abuse in the NHS often from the hands of the Staff working in them ..But not all our bad..Only some …..

    • If you find s good area where professionals are mind and Honest I would be most interested especially if they have open dialogue – I agree with everything you say.

  4. Ewan Buchanan said:

    Such a relief to find this blog. So dispiriting but good to read the truth about people’s experiences of abuses of responsibilty in this despicable branch of medicine. I simply do not know where to start with all of this, and this is my first post anywhere on this topic, but I am dedicating 2017 (and onwards) to fighting back against Psychiatric abuse in the UK. I hope to post again in the near future. Please can you keep this blog going and please can others post their stories. Thank you so much for doing this blog.

  5. hi I have experienced psychiatric abuse from my Gp surgery who use my diagnosis to disenfranchise me on every level if I ask for ‘too much,’ Actually over a period of 4 years I have never received any input from my GP which is worthwhile, she has basically recorded everything I say to my surprise I have found things written about me which are incorrect as verbatim, lacks discretion and has been twisting and turning everything I say to her advantage. I was trying to withdraw from meds for 4 years and have come up against so much oppositions. I have literally realised how incompetent the GP is in this area but it is difficult to prove as there are phantom appointments and they have withheld information from me. I have been on medications for 14 years and should not have been on them. What happened several years ago should not affect the way I am treated now but I am always reminded I am a mh patient when it suits them. I have literally had to see through all the lies and I have notices fraudulent information written about me and my parents. This is illegal but sometimes there is not way of finding out and one has to dig deep. There are also phantom appointments and my Gp has just passed the buck all the time. After I wrote a letter to the practice manager and did not get a response, I decided to go and meet her in person but she refused to answer me. I have had my confidential information breached to third parties without my consent, and a GP ordered several tests which I did not ask for. The more I kept going back for help the more I was seen as having a more and more complex mental health problem. I have been spoken to rudely and the GP has written patronising information about me such as I always wanted med, so I could socialise. I was accused of abuse after I wrote a letter to the practice manager.

    • You, or any patient can get nowhere, in the new world of monopoly, private, self preservatory, for profit public services.

      If you complain you get nowhere, and even thrown off GPs books, and they have to find another equally unhelpful one.

      All are being paid for computer pathway drugs and profit, and not providing service.

      Mental health is a modus to marginalise and discredit, so much for the much published removal of stigma, this is just a ploy to harvest more impotent mental health consumers.

  6. ‘Treatment Resistant’ appears to have been created to cover wrong treatment, or drugs that do not work, or as you say bad reaction to drugs, which many have as they are basically toxins for example, the lady who wrote ‘The Pill that steals lives’.

    We also have the issue, as I have two blog posts about that antipsychotics block dopamine and this causes an imbalance, as does anti depressant’s increased serotonin, and after constant use they actually cause an imbalance and change in the pathology of the brain, where there was none and create the ‘illness’ they were supposed to cure ie psychosis/ depression and this can also be termed ‘Treatment Resistant’.

    We now have drugs created for those labelled drug resistant, so it is used to pharma advantage rather than removing drugs or working out what the problem with them really is.

    • sbev2013 said:

      How very true but as I proved by the P450 liver enzyme tests Elizabeth cannot metabolise these chemicals. None have worked but I have proven by the private care i provided for four months that change of environment and therapy can make someone well. Unfortunately it is care in the community coupled by drugging that is failing resulting in many returning back to hospital.

  7. As you say, an additional issue with drugs, is the specific effect of the chemicals on a particular individual’s specific physical system. All these things are not brought out by drug trials, and are not monitored.

    Sadly, as you say, if they return to hospital, they can command more income and pharma profit, and therefore it is win win for the private providers, as they increasingly own the hospitals, and these hospitals only have the basic very basic physical monitoring, and no emergency treatment, which is why many have died, as they have had to be transferred to a proper hospital.

    The nub is, the worse the care the more the profit, and with no accountability for care and no measured outcomes profit will of course come first and as the government has designed the system of care in this why once has to think this is what they must have intended, they are certainly doing nothing about it, not even insisting on independent investigations of deaths.

    • sbev2013 said:

      It is depressing to acknowledge this. My daughter is in Suffolk ward chase farm hospital in Enfield right now. Unfortunately she is under section 2. If only they had done proper assessments on her. We have her a chance to be free for four months but with no proper structured help she has gone downhill. The private sector wards are like prison with tight security – here at Enfield the contrast could not be greater – it is not strict people are free to go into others rooms – for someone vulnerable possessions can be easily lost. Elizabeth needs specialised care now to deal with trauma and has PTSD . This has been caused by a serious incident going back a long time now but all these years drugs have done nothing but suppress her feelings .

      • But it appears , particularly now in the all for profit mentalhealth care , drugs and containment at huge cost to the public purse is the only help on offer and worse still will be enforced for life. It is for the profit makers and all those who work for them and pharma very easy money for effectively abuse and worse outcomes. I just hope you can get your daughter proper help but I don’t know how .Best Wishes, Finola

  8. Lizzie M. said:

    I have just come across this blog. I am an Enfield service user on Quetiapine 800mg, only I have lately, very very slowly, reduced it to 400mg by myself, no GP or anything. Guess what? Feeling better and thinking about returning to work for first time in 18 years. I was v. interested when you say a professor asked how can anyone function on 800mg quetiapine a day. I just about function, studied part-time, can seem fine to others. It is a blessing and a curse. Curse being nobody understands my reality. People think I am just a scrounger then happy to laugh at me for being strange and at the manifestations of my anxiety.
    I have been hospitalised at Chase Farm twice. I stayed at a halfway house in Palmers Green and after that was with CMHT. Chase Farm was the worst in term of what I experienced in the name of treatment. The time in 2007 worse than before. Bullying Psychiatrist, nurses and nursing assistants with not one of them I met being any better than others, apart from a couple of the nursing assistants. Bullying from patients making my psychosis worse. Filthy bathroom. No security. Thankfully I was able to discharge myself once I had discovered I could – by reading a leaflet.
    My experience of CMHT was much better. Home treatment team were really good. The halfway house was better than the Ward too although not clean generallly and some of the staff were better than others. It made such a difference being able to lock my door and have my own bathroom.
    I am saddened to see that things are still so bad at Chase Farm. I don’t understand why people go into mental health nursing with that attitude – unless they actually do it so they can bully people. I recently applied for training because I wanted to make a difference but was turned down. I suspect because of my history. But I felt I was able to understand people.
    Is Chase Farm worse than other hospitals in UK for mental health? Are they all like this? Something needs to be done!

    • Very interesting response – thank you Lizzie. I know the drugs may affect people in different ways but I have had extensive tests (not available in the UK) that a leading professor told me all about – the P450 liver enzyme test. Going back to when Elizabeth was on this maximum level of Quetiapine she was living in a scheme in the community called Moti Villa situated in one of the nicest areas of Enfield. Something bad happened to her – she was being admitted into hospital during this time and prescribed on top of this huge dosage, Haloperidal, Zopical, Lorazepam, Clonazepam all at once. How interesting that you say that Chase Farm was your worst experience. No security – in terms of personal possessions yes I would agree. There were bad incidents on the ward both from other patients and staff. How good it is that you were able to get discharged. I do not feel any of these wards should be used long term. I did like the halfway house but after quite a long spell on acute wards (various) all over London and witnessing the shocking things that go on within them Elizabeth was further traumatised and was completely drug free and any change was very frightening for her. I could tell leading up to her transfer to this recovery house she was getting herself worked up about it. She was so desperate for counselling whilst on the mixed ward of Trent in Edgware that she rang the bell on the door of the home treatment team and all she wanted was therapy. Very sad as this was obviously not being provided where she was and it was a volatile environment on this mixed ward. She did not settle at the recovery house. This was not like the recovery houses in Australia on a much smaller scale which would have been better suited but sadly we have nothing like this in the UK. The idea is good but 12 in a recovery house can be too much for some people. How interesting you point out about mental health nursing – I suppose some go into nursing with good intentions but end up being hardened and uncaring. There are some good, some bad and the bullying comes in the form of coercion – they certainly do not want information shared with me as a mother that is for sure but they have their techniques of ensuring that things are secret however the truth always comes out in the end. What a pity you were turned down as you have written so brilliantly and truthfully about how things really are and it is more than just having qualifications that is required in my opinion. I admire you for trying by applying for training and I think you would have made a huge difference.

      Elizabeth has been in even worse places than Chase Farm would you believe and held a virtual prisoner but this has all been paid for locally and thought to be “best interest”. Imagine being sent away to Wales to Cambian where a psychiatrist tries to influence as to which parent is more suitable to remain in contact with. The same thing went on in Enfield too.

      I appreciate there is a shortage of beds but to just dump someone into the community that has complex ptsd is wrong as Elizabeth – all she wanted was counselling.

      Now a psychiatrist and team want to hold her for longer in an environment that is totally wrong. Costing a lot of money that the taxpayer is paying for instead of providing services and activities in the community based on individual needs.

      In the community it is wrong to just not provide anything. Six months of person centred approach involving someone from Disibility Action failed to produce anything back in 2012. If Elizabeth had just a few companions of her own age to go out with swimming, to do music or art groups or even in terms of mentor – not staff but peer support who really understand – people like yourself but staff who are there to control and dictate. I tried to provide this myself in desperation. A friend’s daughter was a first year psychology student and after spending time away from the scheme in the company of someone decent there was a huge improvement.

      Some people like yourself could play a major role in helping someone like Elizabeth. I also think that people like yourself and Elizabeth should be included in any inspections of health services as both of you would know exactly what is needed to improve things.

      Thank you for your comments.

      • Lizzie M. said:

        Thanks for your reply.
        It’s funny, I had to prepare an idea for local services for my nursing interview and one of the ideas I had was to have social groups for CMHT patients. I thought of having walking/sports, art, music, games etc.
        I have experienced this isolation myself and have done art and writing classes at The Mary Ward Centre and City Lit, both of which I highly recommend. Mary Ward art classes have good concession rates too. However my experience has been that the social contact such classes brings is generally confined to the class time. Also this is being with people from all walks of life which is good in some ways but I feel that there is a need for being able to meet people who have similar problems, peers, as you say.
        I looked at the website for Mind in Enfield, based in Edmonton and saw that they actually do this anyway. I have never been myself so can’t say what it’s like but it looks good and worth a look if you haven’t already.
        Also there is a Mental Wealth festival coming up at City Lit 12-14th September. Maybe you would be interested in that. There are many drop in activities and maybe a good way to try out if classes there might be helpful.
        Also there are community art classes run by ‘Tottenham art classes’ that are very affordable. They are on twitter as @tottenhamarts

      • There used to be something good where someone would come to the house and there would be lifts to and from places. Social activities to meet others and Elizabeth would go out in a group. I do not think this is running any longer – I don’t think that Elizabeth would now go on public transport on her own to areas such as edmonton and Tottenham. I wonder how long they plan to keep hold of her in an environment that is totally wrong. There is no encouragement in fact I am appalled at recent things documented by certain team members . I think such comments are abusive on their part.

  9. Lizzie M. said:

    I’m sorry to hear about that. I hope that this situation improves somehow and that you find better support from someone. I would still look at the Mind in Enfield website. They do advocacy and give advice too.

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