There definitely needs to be changes made to the law in the UK which allows sections to go on for many years for patients who are of no risk to the public yet they are kept a prisoner on never ending prison sentences at great cost to the public which could be better spent on improving the NHS. Tribunals can be long and drawn out it is determined by the opinion of an “expert” – psychiatrist/team whether that person is either a risk to the public or a risk to themselves. The latter is no excuse to keep someone inside for years and years on end which makes rehabilitation that much harder. I have found that hospitalisation leads to more insecurity, loss of confidence and dependence upon the team. It is all about control and money and totally unfair – given the right support I believe that there is hope for many who are currently just thrown on the scrap heap.
At one point, prior to frequent hospital admissions, Elizabeth was on a local acute ward for close to two years where the care was mainly drugs. However she was allowed to come home at weekends and the family got to see her regularly. However, all the time Elizabeth was desperate to get out of hospital and return to life in the community – she spoke of her wish to get a job and I was full of hope but the process of getting her released from hospital dragged on and on due to lack of facilities and it was felt and certainly hoped by me that having a flat in a scheme could be the answer for her future independence but first of all the next step was placing her in a rehab unit (on hospital grounds) she was about the only girl amongst 9 men on this ward and this was not good and turned out disastrously. I had such high hopes for this rehab unit but patients were pretty much allowed to do whatever they liked with little supervision and Elizabeth is vulnerable which was not a good situation. Whilst on this ward Elizabeth started smoking. Lots of patients were just lying around doing nothing and I thought – there is no way I want this for Elizabeth so I tried to get her away from this “care”. I had desperately tried to get Elizabeth away from the system before in terms of helping her get a little job. I realised she could not do very much because her memory seemed impaired by the drugs but Elizabeth is not a lazy person – some people think that of mental health patients and they are very wrong. Elizabeth was not capable of getting to and from appointments or remembering them due to the level of drugs she was on. She was just left to go downhill in my opinion and little encouragement from the team. I took her to Reed Employment Pathways to find a job as they help in such a way to provide mentors etc and when someone has been in hospital for so long they lose confidence quickly – The hospital did nothing to provide someone to accompany her and I had to do all the driving to and fro in the hope that Elizabeth could get away from this shocking care. When I visited the ward one evening I noticed a beautiful flower arrangement on a table and I got to hear that Elizabeth did this. I then spoke to the staff that I felt this could be something that Elizabeth could benefit from as she was artistic and I then went down to a local specialist college where they do agriculture studies amongst other things and I enrolled her on this short course. I did speak to staff to book this course for Elizabeth but when nothing was done I decided to do it and the consultant psychiatrist was not at all pleased. It meant me having to go to the hospital and pick her up once a week and take her and I waited outside the whole time as sometimes Elizabeth would suffer a panic attack and on occasions refused to go in but what a transformation when she did go in and these were able bodied people not disabled. Elizabeth was able to make a flower arrangement as good as any of them and the staff liked them and wanted to buy the flower arrangements. The consultant psychiatrist who was far from happy at first even had to admit that it was a good thing for Elizabeth who would come out of the classroom a different person. I am sad to say that Elizabeth did not get the qualification for the flower arranging course. She was meant to go to the college at a certain time during the day and I could not take her and she may not have seemed keen to do the bit of written work outstanding but this is where the team should have been more persuasive and encouraging and the teacher was most upset about it and so was I. All those months and beautiful arrangements but nothing to show for it.
In addition to the flower arranging course I also used to take Elizabeth running and I tried to keep her fit as I noticed to my horror that most of the other mentally ill patients seemed to either be smoking or eating junk food and not exercising. I used this opportunity to go running to practise for my forthcoming police bleep test which proved very beneficial.
Elizabeth suffered mood swings as a result of the high level of drugs she was on – she was clearly having a very bad reaction to this drug and I had read it should only be given short term, not long term and she had been on it for years. At home I felt it could be upsetting for Elizabeth as her sister was now happy and on top of the world despite being diagnosed with Schizophrenia – how can this be that I see my younger daughter so very happy and it makes me think mistakes were made and a diagnosis in both cases was given far too hasily without proper intensive trauma therapy and counselling instead of the mind altering drugs.
Going back to when she was 19 and problems first began Elizabeth lived at home, had suffered trauma and I don’t know who or why she went to see her doctor but this doctor prescribed Cipralix and she took herself off this drug 30mg in one go – this was not my idea or suggestion but she chose to do it as she was suffering serious side effects before going abroad for a trip of a lifetime. I immediately noticed a change in Elizabeth whislt on this drug and her deteriorated behaviour was definitely linked to taking this drug which led to aggression/severe side effects like severe headaches and behaviour and skin problems. I had never seen such behaviour in her before and her appearance went downhill too. She no longer seemed to care about anything but the drug was not working – she was getting worse on this drug. I did not advise her to go to her doctor but I believe someone did the drug Cipralix led her to scratch her face causing scar toher once perfect skin and leading to a pattern of behaviour where she was suddenly rebellious and seemed to lose interest in things. Her eating habits had changed from vegetarian to vegan and she was hardly at home, during this time I was caring for my elderly father who had Alzheimers as well as my younger daughter sectioned who is now on top of the world. Sadly Elizabeth came under mental health services and to begin with I just wanted her to get help – I had no idea of how shocking things were re care and drugging. She was put on a waiting list for 9 months and then came the labels one after the other. I know that these labels lead to drugs and access to services but always felt that her behaviour was as a direct result of the drugs not down to any label these experts chose to give as I had witnessed Elizabeth’s eyes and she described to me her suffering on these drugs with many serious side effects mentioned on the leaflet that I felt she was doing the right thing by coming off the drugs which was her decision but I wish I had insisted she did this very very slowly as that I reckon led to her psychosis by coming off them in one go. She was then told by a psychiatrist local care that she had Schizophrenia and would have to take drugs for the rest of her life – it was then I noticed how she seemed to give up on life and felt she could do nothing any more. I was upset about this -I had already seen the effects of these chemicals on my younger who was also diagnosed with Schizophrenia as a child and against my wishes given these drugs whilst sectioned (Rispiridal) (wrongly reported in Daily Mail on Line) which made her balloon in weight and suffer more anxiety than before. Both of my daughters suffered trauma which I cannot go into on this blog but was not family related and involved police. Elizabeth has suffered far more by being under the services of mental health care. Every hospital admission saw an increase in drugs and Elizabeth just did not seem to get on with these drugs at all and they seemed to make her worse but I desperately tried (not only with the floristry course, a voluntary job, a netball team, running club and competitions which meant taking her twice a week, many other things) to get her away from mental health services and get her integrated into society. Even at the scheme where she was placed I made a point of having her to stay at home during weekends up to a point but then the drug (Quetiapine) which she had been on a long time seemed to be having a terrible adverse effect on her – namely Akathisia. Elizabeth missed out on some very good times as a result of the adverse effects of these drugs which meant I could not have her to stay even like I used to and she was not happy at the scheme but nothing was done about this at all despite my complaints. Elizabeth missed out on the wedding of one of my best friends which was in the Lake District in a beautiful peaceful area which would have suited her. Elizabeth missed out on the spa hotel and would have enjoyed this but she was too unwell to take. Instead Elizabeth was becoming more and more isolated in the scheme. She would tell staff to go away but I did notice at one point she was responding to another resident more than staff and going out with that resident who happened to be a very nice person however this person had her own problems and was not always well enough. The more isolated Elizabeth became the more she was giving up on life and not caring about anything any more. She was not eating well, she was living off junk food and was not looking after her flat any more. Staff stay away if someone refuses help/appears to be going downhill and one week only £10 had been taken out of the money I left with the staff all week but the staff took the view that I should not help with the washing/ironing and just let it pile up to the point she would have to do something but I could not see this was ever going to happen. The more mess and chaos the more this would affect Elizabeth so I disagreed with this view to let someone get on with it. Clearly the scheme was not right for her and the loud thumping music got on her nerves which was caused by a neighbour below – you could feel the vibration of this music and Elizabeth once was sitting alone with no light as a light bulb had gone – not right at all – such a scheme is good for those you can manage but due to the length of time in hospital this scheme just did not work out unfortunately but the idea in itself is a good one. I am not criticising the scheme as a whole as it is good for some people just like the drugs – some people can get on with them.
It is sad that Elizabeth is so far away and for so long was left to go downhill as no one did anything about the drugs despite her email to social services begging to be reduce off the drugs and when I insisted on having a copy of this email which I felt Elizabeth was entitled to have, this led to me being banned for a while at the scheme and Elizabeth having to come down in her dressing gown and sit in the car with me. Also her social worker stepped in desperately trying to push Clozapine at my daughter and each time she refused and Elizabeth complained to me about this and I complained to the social worker – social workers are not doctors and should not push drugs. The Bethlem was supposed to give her a drug free period of assessment like Professor Murray suggested – in the first week she was offered Clozapine twice and each time she refused. Elizabeth had also given consent to the whole family to see the medical file and signed an Advanced Declaration. The Bethlem abused her human rights by eventually succeeding in drugging her up to such an extent, mixing the Seroquel with Olanzapine and taking her off a steep amount to the point my daughter rang me time and time again whilst I was at work in a distressed state. When I complained to the Bethlem the response was to send threatening letters about my behaviour being upsetting to staff and other patients. In fact the other patients were pleased to see me on the ward and were interested in the oils that I brought which Dr Ann Blake Tracy recommended. “the only thing that helps me is the oils, Mum” I also brought a box of supplements in prescribed by the private psychiatrist I appointed and these have gone missing. I have not had a response from the Bethlem about the supplements and sent them the bill of £130 and as for Cambian if they say they have got them I will need to see proof – they had run out of fish oils a while back and this makes me question whether it is true or not that they have found the supplements and I need to see proof as already a mobile phone has gone missing and a blanket but the blanket they say they will pay for – well £130 may not be a huge amount but it is the principal – these supplements must be found for when Dr Walsh comes over as they may be useful then when he comes up with the correct treatment for my daughter.
So I got to find out by chance the Bethlem had put her on Clozapine – Elizabeth said she was on a new drug beginning with the letter M and I then told the staff at the Bethlem that they should tell my daughter what she was on and it was when I took her running in the grounds I soon got to find out and then I was consequently banned and no longer could I spend lovely days in Bromley and Croydon with my daughter. I was cut down to 1 hr and eventually banned altogether. I have never experienced such abuse in my life and other people I had taken along with me as witnesses were equally shocked. Also I did not get all the papers concerning myself under the Data Protection Act like I am entitled. I should have got copies of minutes I attended – Elizabeth was not present but where was my copy of the minutes. Instead I had to ensure that I did the minutes of the meeting and luckily I do shorthand and when I was cut short in conversation by the consultant psychiatrist who was not interested in all the books/information I brought along to show him. Many of the people at these meetings which contained as many as 9 were students and I hope they learnt something with all the information I brought but no wonder such a meeting was distressing to Elizabeth with 9 people and no advocate present. It is no wonder everything was done wrong. They did not have a clue how to decrease my daughter off the drug properly and this led to her suffering psychosis – nothing to do with the so called label which was incidentally disputed by another professional so I saw in the local files. Well you cannot take someone off 150mg of Seroquel and mix it with Olanzapine – the consultant psychiatrist was too lazy to read any of the books I brought. He said “I have enough reading to do”. I showed him exactly how things should be done and the instructions were by professionals not by me just a mother however even I knew you cannot do such a steep reduction as 50mg was too steep a reduction last time – Dr Ann Blake Tracy gives the correct instructions and in her book Prozac Panacea Pandora there are many interesting facts listed. I have spoken to her on the telephone and am in touch and wish to thank her personally for all the advice she has given me.
My only good experience of the time my daughter was at the Bethlem was the all day trips out to Croydon and Bromley as well as the fete in the grounds but then all this was spoiled by the consultant psychiatrist and team when I was banned from seeing my daughter but she was texting me just like she was at Cambian during the time the team said I could only have supervised phone calls at 6.00 pm on Mondays at her request. None of this is true and I have proof of it
There is such dishonesty and manipulation/bullying going on and the law fails to protect people like my daughter. Vulnerable people need more protection and a team will stick together if things go wrong. Also there is the element of exclusion and lack of communication.
The arrangements for the Tribunal have been going on since end of last year and have been dragged out for one reason or another which I have previously documented – the team like to play on capacity and what when someone has just taken the drugs and is in no fit state to give a decision. There are times when someone lacks capacity and this leads to manipulation by the team. – for example the consent from my daughter for Dr Walsh to be involved as well as her consent to see the independent doctor – many disturbing things have happened and I am against the section as when mistakes have been made by the Bethlem what on earth is my daughter being punished for. Adverse behaviour can come about withdrawing from any drug – this was entirely their fault and not my daughter’s and I think it is disgusting that this should be allowed to go on. I cannot say too much – a Tribunal is a chance for someone to come off a section and my daughter is currently not a risk to anyone – she needs more support and care than ever now and I as a mother and the Nearest Relative (the team want rid of) want the best for my daughter and am determined to get this one way or the other especially after the shocking way she has been treated – not only for my daughter but there needs to be a complete review and update in the law and care.
I did not think the best care is on offer locally and funding should be supplied to an area where there is good care if someone wishes for this and everyone is different and should have the choice and right to choose. This outdated law needs to be changed as public money is being wasted with the dragging out of Tribunals and never ending sections. The money would be better spent on A&Es in my opinion – also if these drugs are given on such a long term basis there needs to be proper health checks and if someone is suffering terrible side effects then the correct facility should be given for that person to come off the drugs rather than deteriorate and if things were done like Dr Tracy says correctly then that patient should not end up suffering terrible withdrawal symptoms – even on 1mg you should have seen the effects on my younger daughter. – The right environment is peaceful and not a shocking acute ward as I saw so many patients returning to these wards and obviously not getting better. I recognised the same faces with every admission of my daughter. A patient was feeling disturbed may well need peace and quiet and there is no peace and quiet on the wards that is for sure. Also someone like Dr Walsh and a team of other doctors he wants to train up could help my daughter more as she has complained of not being listened to and then I end up speaking up for her to the staff who just ignore and take no notice. Then you get labelled yourself as “aggressive”. The private orthomolecular psychiatrist listened to my daughter when she said she was experiencing terrible side effects (Akathisia). I have never seen her look so happy and when I took her up to the Bio Lab in London – if things were done properly then she would not have suffered like she has and I am far from happy she is on a section because of their mistakes. Not once do you ever get any apologies. I also do not agree with CTOs.
There are more and more cases of drug induced psychosis and yet no one is questioning the safety of such drugs except for a few who are brave enough to speak the truth – Dr Candace Pert (Molecules of Emotion) Prof David Healy – Pharmageddon and I have other books too from professionals. It is these professionals who should be called upon to help along with others like Dr Ann Blake Tracy, Dr William Walsh, Peter Breggin, Joanna Moncrief and others – with their help a better kind of care and choice could be given to MH patients unlike at present and especially for those who have been written off and classed as “untreatable”. This is nonsense in my opinion – no one should give up on anyone and label them untreatable and more research needs to be done on the safety of these drugs in a proper manner – the drugs manufacturers should be doing something to help the victims of the pharmaceutical industry. I can prove I am not alone in wishing for change as I am in touch with many others who feel the same way and I believe patients should be included and that the Government should take a look at the success rate in Tornio Finland where I would like to take my daughter and would consider living there.
The law and what is going on in the UK is against God as I believe that much profit is being gained at the expense of the weak and vulnerable like my daughter. I am shocked that the religions of the world do not do something about this situation as I cannot think of anything more diverse than mental health which can affect anyone with devasting effects.