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My daughter Elizabeth was brought over to see me briefly by the rest of the family this evening. It was so lovely to be like a family again – all of us present for a change.

I spent most of the day shopping and preparing food. I was careful to choose really healthy foods having read the book by Dr Ann Blake Tracy and Dr Walsh and I may well phone Dr Walsh over the weekend. I would like to see the correct diet for my daughter as the wrong foods can affect behaviour bearing in mind the drugs she is on. I have seen the effects of this as a mother and I thoroughly agree with Dr Ann Blake Tracy and Dr Walsh. I have already telephoned Dr Tracy and now I shall ring Dr Walsh. If only these professionals together with a top chef like Jamie Oliver can get together they can transform care under the mental health like never before. Jamie Oliver has done various projects but has never tackled something as challenging as the mental health care before – whilst the food is a far cry from local level much can be done to improve things for the patients on the wards and this is where these experts should be called upon. There is special relevance with regard to Jamie Oliver and I don’t mind paying for his appearance on the ward to educate the patients and to review alongside Dr Walsh decent food in hospitals that could benefit everyone under the MH. This is some the DOH can invest in with the huge savings they have made that I read about in the Evening Standard on Friday last.

Anyway, the visit went well and Elizabeth was overjoyed to see her cat.

Elizabeth was visibly tired and I am sure that the cocktail of chemicals given contribute to this.

I did not probe and question her as I wanted this to be a special occasion but I also wanted Elizabeth to see how much support she has out there and how I would like to turn my website into something better and attract advertising for instance in order to donate to Chy Sawel for example. It sticks in my mind something Richard Branson said on Linked-in and this has inspired me with the idea of trying to raise some money for the kind of unique care that Tornio has to offer.

Elizabeth wanted to see her favourite band called Nightwish but this music is not my taste as a mother and sounded a bit depressive for my liking. Elizabeth spotted a picture of Eleanor Longden and I played to her the wonderful dvd and as she has been to Finland, we also looked at pictures of Finland and I have promised to take her to this country where they have the best care in the world.

Why on earth doesn’t this Government strike up a deal with that of Finland as I am so impressed with the care that I would pay something towards this myself. This Open Dialogue care is the opposite of “care” in the UK and it is no wonder they have 95% success rate.

Elizabeth did not feel up to writing much as she was tired but was thrilled with the support on Twitter. Also I briefly showed her the picture taken outside the Bethlem with all her supporters – former patients and myself of course. Elizabeth has said “you are a strong person, Mum, do what you can for me” One thing I have learnt is nothing comes easy in life and you have to fight for things. I happen to think that my daughter Elizabeth is worth fighting for. It is never too late to do things in life and I am appalled at eh way the mental health care keeps talented people down without encouragement and given the right kind of support many of these patients have so much to offer.

In no time it was time to take Elizabeth back to stay at her Grandparents house but I was very happy to see her back home. Eventually I would like Elizabeth back home but I also want for her to be happy, independent and free. Whilst I do not wish to control her life I do not like what I see one bit with professionals causing trouble and divide within the family and people end up staying in hospital under private sector for about 3 years so I heard. This is unacceptable! My daughter should not even be on a section as mistakes have been made at the Bethlem. I want this section removed as it is an infringement of human rights. It is Elizabeth’s wish not to be sectioned and it is no point in the team saying otherwise as the whole family are witness to this.

It is wrong that I should be replaced as the Nearest Relative by social services simply because they wish to wash their hands. If the care did not work locally they should continue to provide as it is the fault of the local care for her to go downhill in the first place. Why should this be passed to another Council to pay for. It is wrong also for social services to resort to bullying tactics and it is not good enough to receive a letter from the DOH – as I have previously documented. I have quite rightly pointed out to the DOH they need to update their Strategy 2010. In fact over the weekend I may make suitable amendments to pass on to them myself.

It is miserable weather in the UK – I wanted to do a BBQ but could not because of the rain. What can you do in this weather. It is a shame Elizabeth could not stay a while with me and I would have taken her out. We used to go to lots of nice places including London but then I had to choose quieter locations – that is fine as I lead a hectic life and do not mind peace and quiet. I am already planning ahead for when we all go down to Wales soon and have seen nice accommodation to stay in – a Spa! I still hope to go and take Elizabeth to Bluestone but my ultimate ambition apart from eventually improving my website is to go to Finland to Tornio and it would be nice if Mr Lamb himself went to visit so that changes can be made over here and then I would be full of praise instead of criticism.

Some people on Twitter have appeared defensive but every case is different I would never say to someone “I know how you feel”. I would never say to someone “no harm done” or “it doesn’t seem so bad”. If the drugs work for some people I would never criticise having read Dr Walsh’s book however these people who say they get on with the drugs must respect others who are not happy – I as a mother am not happy in the slightest bit that professionals have not listened to my daughter and when I as a mother have quite rightly defended having listened to her – what right do these professionals have to start slagging me off behind my back.

I do not like ANYTHING about the care in the UK. It is secretive, and should be open and accountable to the public when dealing with vulnerable patients who are too weak in some cases to stand up for themselves.

At the Bethlem I was told to sit back and relax and leave things to the professionals. When I heard what they were going to do I immediately brought evidence that what they were doing was wrong and the response was one of laziness. They clearly did not know how to do things properly and there were students there too so I thought that I had done a good job of bringing forward evidence and information as to how things should be done in terms of the reduction. It is not my daughter’s fault if she suffered psychosis – I am outraged by a professional taking my daughter off 150mg of Seroquel and mixing it with Olanzapine. I had sought professional advice and taken the time and trouble to read books on the subject. Not one apology has been forthcoming for their mistakes and the way I have been treated and this is not good enough in my opinion. Anyway it will be a while now for the Tribunal but I am so happy that Elizabeth has had a good time this weekend.

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My comments in brackets: Sorry to hear of your daughter’s ill health and I appreciate your concerns about MH standards. The Government’s ambitious approach to talking drug use is set out in our 2010 Drug Strategy Reducing demand, restricting supply, building recovery: supporting people to live a drug free life which can be accessed on …

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My Daughter Elizabeth is coming home at the weekend and I am very happy.  Unfortunately since being at Cambian for a year the visit will be very short.  She will be driven down to spend Saturday  with the rest of the family as far as I know and then they will bring her to me in the evening for just a few hours but it will be late and Elizabeth will be tired.  I remember the last visit.  I picked up Elizabeth from hospital in Wales, myself and my younger daughter spent the day in Wales before coming come which took several hours by car.  Then the rest of the family wanted to see her and she spent no quality time at home whatsoever and I was shocked at how quickly staff arrived to pick her up bright and early the next morning.

 

When someone lives so far away it would surely be more humane to allow a two night visit but I remember the last time this was flatly refused –  I wanted to take her to Bluestone National Park on the suggestion of staff there but when I pointed out that it would take several hours to drive there after spending most of the day driving it seemed so unfair that the team would not allow 1 extra night. 

I personally think that such allowance is at the discretion of a team and in particular the psychiatrist.  A psychiatrist can say what they like and make out someone is unwell when that person could benefit from a slightly longer stay and I believe this is very cruel as it deprives Elizabeth of spending time with the family but no leave was granted whilst at the Bethlem so if you look at how long Elizabeth has been under this so called “care” she should surely be entitled to more than just 1 night bearing in mind the length of travelling and journey involved which leaves no time to spend at home and how unfair it is to play on the “law” by such control.  It has been unfair the way I have been treated and my daughter and the minimum allowance of leave given but I expect the real reason for this is that they do not want to unsettle someone who is perfectly safe with the family but may not wish to return to hospital back under their “care”.    No matter how nice things are compared with the care experienced at local level there is such a rigid control and strictness/exclusion and discouragement of family contact that I have ever seen before but then if a catalogue of nasty things have been said behind my back by the previous team the new psychiatrist takes such comments on board and it has been most damaging to the whole family the catalogue of events that followed and assumptions on the part of a team under a doctor who have never even met me personally.

I am grateful I will see her for a short time and of course the Tribunal is now arranged but I cannot discuss this openly.

My only comment on Tribunals is that the courts dealing with this should be OPEN, not closed.  This is after all public money and the public have a right to know what is going on under this secretive and controlled system.

 

 

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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.

Friday – out with friends and colleagues on two occasions. Saturday a quiet day but could not get through to Elizabeth on her new phone. I could not hear what Elizabeth was saying the night before as I was in a noisy station and I had to buy her a new phone as it has mysteriously gone missing. Elizabeth now has that phone and telephoned me yesterday.

Tomorrow my younger daughter is preparing a BBQ for my Birthday but I shall miss being a complete family without Elizabeth there as well but cruelly in accordance with the dated and shockingly cruel law of the UK Elizabeth is held miles away in Wales on a sentence that can go on forever under the Mental Health Act despite the fact she has done nothing wrong. All she did was push two nurses out of the way as she wanted to go outside of the prison camp environment of the horrific Bethlem Royal Hospital. Prior to that Elizabeth suffered from Akathisia which can only be described as the most horrific side effect from the drugs themselves NOTHING TO DO WITH ANY KIND OF LABEL OR DIAGNOSIS OF WHICH THERE ARE THOUSANDS TO MATCH EVERYONE IN DSM 5. No, Elizabeth was suffering from the results of the drug itself namely Quetiapine manufactured by Astra Zeneca who I wrote to personally to tell them of the shocking side effects my daughter was suffering and everything is shrouded in secrecy. Well I believe in openness and honesty and am documenting everything like this for the world to see as no one has a clue what really goes on behind closed doors of the shocking care in the UK. I do not discount good members of staff are present. I can even list some of them but that is not the point I am right in saying that the law, the care is dated and needs changing and even some professionals agree with me but God forbid if they speak out. I am just a mother but have encountered shocking abuse and bullying so you can imagine the bravery of those who do speak out and the consequences they are faced with when there are some at the top who only care for themselves and not those who are the most vulnerable people that need support and care. It is not just the professionals take a look at social services who get involved in the pushing of drugs too. They are no professionals in terms of knowledge of drugs so what on earth are they doing! I have received bullying and can prove it in writing and total lack of inclusion and communication in the past and they cannot do anything right now as I have solicitors appointed but what when those solicitors are not appointed – who is going to protect me as a mother then as once the solicitors disappear it will give the grounding for the so called healthcare professionals and social services who provide the funding to attempt again the displacement of me as the Nearest Relative. This will be done in the most manipulative way as I have seen attempted that my daughter has been asked whether she really wants me to be the nearest relative. This has been done by one particular person and I cannot mention who it is but the person approached Elizabeth on her own without an advocate or anyone present. Elizabeth feels threatened and afraid of the staff that she will lose reputation by not agreeing with them. How wicked the care is. When the nurses discovered my daughter Elizabeth was out in the car waiting for the expert witness doctor who would be representing her in court to arrive they pushed past me like I was a piece of rubbish to grab Elizabeth from the car stating she needed to eat something when in fact the drugs were due. Drugs that could have sent her to sleep and rendered her incapable of meeting the private expert witness doctor that had appointed for the Tribunal. I insisted on waiting in the corridor for the doctor to finish interviewing my daughter alone and he had to hang on for the consultant psychiatrist and even ask where she was! The consultant psychiatrist who does not like me was late and this doctor needed to catch a train home on time so I had offered a lift and besides it was raining. There was no way I was going anywhere because Elizabeth wanted to get a box of chocolates for another patient. The staff refused and they played on the law for her leave which I pointed out had originally been agreed for 2 nights but in fact I only needed 1 night and this was because I had heard from other people how these tribunals are sabotaged by professionals who are a law unto themselves – they can drug and drug someone up to such an extend they can brainwash that person against their own family. That is what is going on as I see it by this private hospital team. The Tribunal should have taken place sooner rather than later and is now not scheduled until October. It is laughable that psychiatrists are answerable to no one and can sit their smugly smiling – I have seen this several times. However there are a few out there who are honest and have a conscience and I have found good representation for my daughter in court and may God praise those who are honest and brave enough to stand up against the shocking abuse of human rights allowed to go on in the UK – a so called civilised country which in my opinion is far from civilised. It is the “uncivilised” undeveloped countries that have more respect for the mentally ill. I would like to see a change in this shocking care in the UK not just in hospitals but in the community as it is the community care that is failing many sending them back into hospital time and time again simply because people can become isolated by society and have become dependant and disabled not only because of the drugs but because of the care itself that leads someone to have to rely on having things done for them and end up dependant on others and suffering from worse anxiety and even agoraphobia like never before. The longer someone is in hospital the more dependant they become and the harder it is to rehabilitate them. Whilst every case is different people get treated the same and they are not treated with respect and the care is mainly drugs which do not help someone who has suffered terrible abuse. The drugs companies should be more answerable and help financially in order to give more choice in care hat does not revolve around solely drugs. Why should they care when they get so much in profit and the psychiatrists are on good money. It is all wrong in my opinion. Elizabeth will be brought down here soon but no doubt for a flying visit. She has only been allowed to spend 1 night yet most of the time is travelling which must be stressful. Why not 2 nights. Why are these professionals allowed to have the power to play God. I may not be the most religious person but I believe in God and hope he will do something to help my daughter and stop this abuse going on. Where are all the religions of the world? Why aren’t they uniting in this fight to end abuse of this nature? Well I believe that I have been put in this position of having to speak out, of having to fight for some kind of justice. I believe God has put me in this position and am honoured and pleased to take on such a challenge not just for my daughter but for everyone. The consultant psychiatrist at the Bethlem told me to sit back and leave it all to the professionals that my daughter was in good hands. Well the minute I heard what they were going to do I brought proof with me on how things should be done and this did not go down well and the next thing I was banned. He also said “I have enough reading to do”. This is nonsense. This is laziness on his partas I have little time but still have researched and looked into things properly and sought advice from professionals in the States. Proper advice which I brought with me to the meetings to prove and was treated like a criminal. I was even threatened with arrest on more than one occasion. I am not bothered by this or any threats but it is a different matter if you are on a shocking prison sentence worse than any jail under MH care. Why should someone but go along with the team. Why cant the team learn and respect and treat patients like a human being. It is one thing treating me like this but another thing in treating a patient this way and this to my opinion is totally unacceptable.

I thought it strange I had not heard from my daughter Elizabeth in response to my text message. I do not telephone every day but was concerned about her wellbeing particularly in light of certain things that have gone on which I hope will be investigated as I now have the legal papers ready for court.

Anyway, her sister also had trouble getting through. She telephoned the office and spoke to her through the office. You have to wait in order for the staff to locate Elizabeth’s whereabouts and you could be hanging on for a long time. It is not so bad if you are on the house phone but during the week I am on the mobile and out of concern for my daughter I telephoned. Could not get through, telephone constantly ringing but no answer. I then telephoned the office and a member of staff said she would look for my daughter and get her to answer the pay phone. Anyway I was just kept hanging on and on and on – I then had to telephone back and the member of staff apologised she had forgotten about me. Elizabeth came on the phone and the conversation was brief. Prior to this staff would not call her because she was in a psychology class and when I could not get through later I then telephoned her the next day.

The explanation I have had from Cambian is that her phone as gone missing. I then asked if the staff could help my daughter find the telephone and I got a call back today to say they could not find it.

I am so extremely concerned for my daughter’s wellbeing. Without a telephone to ring anyone in the family she is very highly vulnerable. I am most unhappy and so are other family members and some are suspicious of the phone going missing as some time ago the phone constantly charging in the office and when I complained I got a short curt letter from the Manager of Cambian to say that it was at my daughter’s request that I only be allowed to have supervised phone calls every Monday at 6.00 pm and the staff said that was her decision. When I spoke to my daughter and witnessed by other family members I was told that this was not true. Now I am having to buy another phone and send it to her special delivery.

Cambian said they would reimburse the rug but if her phone keeps on going missing then this is not a good situation.

In addition to this I have been waiting to hear from the Welsh Tribunals Office and so have my solicitors. When my solicitors said they received no response I rang myself and know the person who is dealing with matters. I telephoned this morning but unfortunately my telephone cut out but not before we had discussed a date for the Tribunal as everyone would like to be there but my solicitors have said that the Tribunal can be arranged by their office at any time they wish without consideration to the family. The person I spoke to sounded very nice and helpful and I explained how upsetting it was that it has all taken so very long and how I have felt that things have been dragged out by one thing and another and definitely the team were involved in delaying the tribunal. It is as though they just want to keep hold of my daughter forever on a prison sentence because that is what it is. She pushed a couple of nurses out of the way at the Bethlem as she wanted to go out in the grounds. You only have to show the slightest bit of reaction and the staff are watching, assessing all the time. I have been kept under strict scrutiny by this team like a criminal and no one has been honest to tell me the reason why I have been treated this way. Well I have found out now – it is all in the legal papers which I have. The truth always reveals itself in the end but the lack of communication and inclusion – deliberate exclusion from the very beginning whilst the team ganged up trying to replace me has left me feeling that this is far from the care I thought my daughter would get. Care should be compassionate. Care should not be pushing and forcing someone to do chores so I have heard. How do the staff possibly know what it feels like to be on 800mg of mind altering drugs. Elizabeth has told me she feels tired, and the drug is highly sedatory. To top it all other drugs like Lorazepam and paracetamol are given on top. This is why I asked where the oils were from DR Tracy and Elizabeth has confirmed they have been found. So, my next question is where are the supplements from the private psychiatrist I appointed? A while back Cambian were short of fish oils and I had no end of fish oils in that box so where are these supplements which cost £130. Well I want to see proof of where they are otherwise I shall be giving a bill to both the Bethlem and Cambian for reimbursement. Now the telephone is missing but Elizabeth will not be without a telephone for long as I am dealing with this immediately. The more telephones that go missing the more suspicious it looks.

They are having a meeting on the 8th August but I will not be going down on this occasion after all. There will surely be another meeting before the Tribunal.

Elizabeth’s Tribunal of course was unsuccessful and I was excluded from this – her father went instead and of course it was only when I appointed solicitors myself that I found out the entire team were plotting once again to have me removed as the Nearest Relative.

Today in my lunch hour I met with one of the many mothers I am in touch with campaigning for her child. So many have got in touch with me all with the same problem, lack of inclusion and communication, bullying and threats. When is Mr Hunt and Mr Lamb going to do something about this situation and I spoke to Mr Behan of the CQC about how I was treated and the shocking way my daughter has been treated by a system that needs complete and absolute overhaul. Both Mr Behan and Mr Lamb spoke of changes as I was not the only mother getting up to speak at this conference in the same way.

I wrote to social services today about the therapeutic communities and how this could benefit my daughter before she comes home. I may have to even consider moving as living in a City is hardly the place for my daughter to get well.

Lets hope I finally get a date for that tribunal this week as it is not fair on Elizabeth.

When you have been treated like this all along you start to think all kinds of things and begin to mistrust. I thought this was a civilised country – the care of mental health patients is not right for everyone. There are those who get on and are happy to take the drugs, there are others who complain of serious side effects and suffer from Akathisia but they are forced to continue to take the drugs. This is inhumane.

Diet could be a factor – a patient discharged from hospital after a long-term stay does not get enough support in the community and if that person is not eating correctly they can easily go downhill. Even the food in hospital leads a lot to be desired and there are no assessments to see if someone is food intolerant or lacking in essential nutrients. Correct nutrition can “cure” a lot of behavioural problems. Someone so drugged up is unable to look after themselves and needs more help and support especially with on a day to day basis nutritious food.

It is really dragging on now the time/date for the Tribunal to be arranged and I have been on the telephone to my solicitors today who are still waiting to hear from the Welsh Tribunals Office who have not responded to them.
I feel sorry for my daughter that she has no news and is still stuck in hospital on section that can in effect take 9 years to overturn and I know of people still under section for more than this length of time. The longer someone is in hospital, the more dependant that person becomes on the team and the more institutionalised they become -the harder it is for them to cope in the community. There should be different types of therapeutic communities set up to help someone rather than just put that person back into the community where they are vulnerable for instance and likely to suffer further abuse. Not everyone took drugs in the first instance, some were abused and these vulnerable people might benefit from care away from the local area where they can establish friendship and be supported properly rather than in a scheme where there is supposed to be 24 hr care and an individual flat – this kind of scheme is good for some but not for others who have been in a hospital for years. The support given is not adequate that allows a patient to live off junk food and not be supported appropriately. A therapeutic community could provide a nutritionist, a doctor, nursing staff, can include peer support from suitable former patients and involve ordinary people from the community as well as student psychologists/nurses and the care should be holistic by way of choice. If someone is happy to take the drugs and they work as Dr Walsh says they may be undermethylated but others may feel differently and Root and Branch have the right idea. I may contact them tomorrow to see how they are getting on with their project as this kind of thing would be ideal for my daughter. I do not feel that coming back to a noisy City is the right option for Elizabeth right now. I as a mother do not want her to go downhill again but neither do I wish for her to be controlled in such a way that a team tries to turn her against me as a mother. Even if a team does not like you it is wrong for them to influence or deny contact or say things that are not nice and my daughter may well have been successful at her Tribunal if the team had not intervened and persuaded her to replace her very good local solicitors with a Welsh Firm.

So far things have been dragged out and this has been going on since before the end of last year. I found out on appointing my solicitors that a further attempt was being made to replace me as Nearest Relative. This means my daughter is being pitched between myself and her father – this is extremely damaging to my daughter and you can judge by this comment the effect it has on her “I will call the police on them, Mum, you are still my Mum” Anyway, I have been waiting to hear from my solicitors the date for the Tribunal for 2 weeks now it has been decided roughly a date that is convenient to the independent doctor, myself and the rest of the family together with my solicitor. We shall all be going to Wales for the Tribunal and I cannot believe that the Welsh Tribunal Office has not responded to my solicitors. So I decided to ring them myself to see what was going on. The person I spoke to refused to give me the name of the person dealing with matters saying that this person was off from work. I complained that things were dragging on and that there were errors which led to further delays which was not good enough. I referred to a mistake in which the Tribunal was lodged as one being brought by my daughter and not me – this then had to be re-arranged. The team tried to drag things out further by saying that my daughter had not consented to see the independent doctor but it was common knowledge that she wanted to be off the section and after all she is no risk to the public. My younger daughter is witness to all of this and spoke to her sister and got signed consent – after all it is her right to have a fair trial and if she is not happy being on a section then neither am I as Nearest Relative. So, then only recently and most shockingly everyone except for me, my solicitors and the independent doctor would have turned up at the tribunal which had been arranged – this is ludicrous what is going on – when I found out by accident I turned up at the hospital and asked what time and you should have seen their faces. To think everyone but me knew – there is a complete lack of communication between the team and social services. It is a good job I found out and then staff did not seem to be aware of my rights – I was told I could not cancel this date. So I turned around and said I would immediately cancel and this I did through my solicitors who were equally shocked at this being arranged. With these mistakes being made on hearing that my solicitors were still waiting for a reply from this office I decided to ring them today. I telephoned and got no information whatsoever but said to the team that I wanted to have that date next week otherwise I would be referring matters to The Rt Hon Norman Lamb MP. This is a matter for the Department of Health to look into and there is no decent complaints procedure – every time I have complained the complaint has been closed without any satisfactory answers so this is why I am going right to the top. I have told the Welsh Tribunals office that public money is being wasted here and the public had a right to know about it and I am more than happy to let the public know what is really going on. So, I shall make sure that I telephone the Welsh Tribunals Office on Monday for that date and if a date is not forthcoming in that week then I wish the world to know about it.

The other people I have been dealing with this week has been Social Services. I am down to 1 social worker now but it would seem there is always the Manager shadowing matters here. I got in touch as I had been speaking to my solicitors about future placements which would ultimately be my daughter’s choice. It is hardly a satisfactory situation for her to be under a hospital even if the facilities are nice – my daughter should not be on a section and they are keeping her as a prisoner because only under a section can my daughter be completely controlled by the team in terms of taking the drugs they prescribe even if the drugs are doing her no good and are detrimental to her health under a hospital the team continue to push these drugs regardless of anything else. What kind of care is this? Having said all of this my daughter is on Clozapine and I am not qualified to take her off the drugs and would not encourage her to stop taking them as she could die as a result. To come off this serious quantity of drugs she would need professional help. There are experts that can help but no facilities – only illicit drugs are worthy of these facilities so a person is told they have to take the drugs for the rest of their lives and when my daughter complained of serious side effects she just got completely ignored despite the leaflets that go with the drugs that say refer to your physician if you experience such symptoms. In a hospital setting the staff want to keep someone drugged up as they are less trouble. The care is completely wrong in the UK that is for sure and I believe that acute wards should not be used for long term or repetitive admissions – at least choice should be given to the patient.

Anyway, here is my recent email to the Department of Health – For the Attention of the Ministerial Correspondence and Public Enquiries Officer:

“I am afraid I did not receive the reply from Mr Lamb and would be grateful if you could email this to me.

I’m being contacted by no end of other mothers, some whose sons/daughters are on neverending sections on huge dosage of drugs. They are written off like rubbish and there is no way on earth I want my daughter to end up in the system for 26 years. The whole care system, law and especially the manipulation of capacity /confidentiality needs looking at that allows establishments whether it be NHS or private to keep hold of someone for years on end. It should not be allowed that a psychiatrist or social services can manipulate matters trying to get rid of you as Nearest Relative by bullying and harrassment. I have not been treated fairly and neither has my daughter and just because I have complained because so many serious things have happened following the initial incident the team do not like this and have sought to replace me several times. All this is wasting public money. I have done extensive research on the drugs and can find virtually nothing in the UK on offer unlike in Tornio, Finland. I would willingly take my daughter over there for decent care. I have noticed there are some therapeutic communities and feel this is the answer for choice rather than acute wards which can be very distressful for some but they do not go far enough to offer the care I would like with proper assessments by Dr Walsh. He is coming over in November to train up 20 doctors and I would like the Dept of Health to Contact Chy Sawel to see how they can help. I do not accept treatment resistant as a diagnosis. In fact I cannot accept any of the diagnoses and want a proper assessment and have paid for this to be done which shows shocking results. I have gone to lengths to try and provide decent care myself but have been treated like a criminal. You are treated even worse as a patient and I meet with a group of such former patients who have a lot to offer. Still a date for the Tribunal has not been arranged and I would like Chy Sawel set up urgently in order that my daughter can have the correct care and diagnosis.

The above is just a small part of the email I have written and I am awaiting their response with interest. I hope it is not going to be the usual standard kind of response that brings nothing and no hope in anything being addressed properly. I have further described how wrong it is to force drug patients and pin them down – this is terrible – that person could be having terrible side effects and t here are no facilities to properly help that person. All the more reason to have Chy Sawel and Root and Branch set up. I have said that I am so keen to see this happen that I would pay for the advertising myself for the 20 doctors needed by Dr Walsh.

Since writing this email, I have been contacted by yet more mothers who are in despair and it is not just me – all the more reason for the Dept of Health to take seriously my letters/emails and do something about the situation.

Tomorrow I shall be busy catching up on chores and meeting up with a close friend. I was so hoping to have some good news on the date of the tribunal to tell Elizabeth but there is nothing. I am very disappointed.

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