This first part of my blog is written by my daughter Elizabeth who is doing very well at home after years of “care” under the notorious Bethlem Royal Hospital, the longest stay of a patient is 2 yrs so I was told and then Cambian Health Care in Wales where patients are kept for years on end and then the care home where they were trying to arrange that Elizabeth’s Dad would be the next of kin.
Just to let you know how I am doing and that is fine. During the week a close friend of the family has been round several times to take me out to various places. This friend enjoys walking and is trying to help me get out as before I just got in the habit of staying in, I was not getting much fresh air – at Cambian Healthcare frequently I felt rough and staff were sometimes pushy and did not understand how I felt. I have come across this in other hospitals too and have spent years in and out of hospitals. I found it very upsetting to see some of the patients who were suffering especially at the Bethlem and Cambian and it had quite an effect on me. There was a patient in the next room to me at the Bethlem who was shouting out loud and banging against the wall and it was distressing to see that. Staff kept a close watch and I have been in that kind of restrictive situation myself which was despairing. At the Bethlem my only good memories were of some of the younger members of staff, I liked to play basketball to begin with and would have liked to have gone swimming but was never taken. The best thing of all was to take the dog for a walk around the huge grounds. One of the dogs was brought onto the ward but the other dog we had to go and see elsewhere on the Bethlem’s site. The worst things on the Bethlem was isolation – by that I mean the feeling of being alone as I was imprisoned and not able to go out anywhere. It was locked and sometimes I did not go out at all from the ward. I felt upset when my Mum was banned from visiting as we used to go out all day to places and I enjoyed this. I did not like some of the staff there – I was denied going out as I wanted to go for a walk – I was voluntary not sectioned when I arrived but I can remember when I was refused to go out one male member of staff refused and said I was only allowed out accompanied – I felt like a prisoner.
When I was transferred to Cambian my first impression was it was luxury compared to the Bethlem and other hospital wards. I was given a cd player and dressing gown. The food was OK – some of the meals were particularly nice. The food was much better than at the Bethlem and local wards. My first impression was good of this private sector hospital. As time went on I began to feel concerned because I was a long way from my family – I could not go out there at all. I started to dislike Cambian as time went on – staff prevented me from making friends through what they call safeguarding. Outings I can remember was the zoo where there were owls and Christmas shopping – Wales has good shopping centres. Staff could be pushy there making you do things without realising how you felt. Some people were too ill to get up – many of the patients there had been in a very long time and were distressed so it seemed to me and some were not allowed to get water – only organised teas on a trolley that used to come round. My consultant psychiatrist at Cambian was a woman – I wont name her but I did not like her very much. Other members of staff were understanding and helplful to me. Sometimes I just wished I could go for a walk on my own but it was not allowed. My tribunal failed and by this time all I could think of was getting out and moving on with my life and a very nice independent psychiatrist came to visit me – a very nice man a Dr Bob Johnson and he did a report which no one gave to me except my Mum. The second Tribunal my Mum brought about – the psychiatrist wanted me to choose my Dad as the Nearest Relative but I did not want to choose between my Mum and my Dad. The second tribunal was successful and I was eventually released.
I was without the car as it was being repaired by BMW so Elizabeth had to come out with me walking which is a good thing. Every so often she had to stop and was out of breath. She complained of blurred vision as well. These are side effects from the drug Clozapine. I have a friend who told me her son is on this chemical and when complaining of such similar side effects was told to go out and buy a pair of glasses. These professionals are dismissive of side effects and prefer to carry on with the drugging regardless of anything that may have been recorded in the files.
I have had two of my new books delivered “Anatomy of an Epidemic by Robert Whitaker and Emotional Health by Dr Bob Johnson. I am starting to read Emotional Health first of all. I wished Elizabeth could have been there at the wonderful course I attended on Psychosis at the Bowlby Centre – I hope to take her next time as this doctor has given a very accurate report and has had years of experience to come to this conclusion. Also he read things properly as I have kept very accurate records of everything. Most consultant psychiatrists cannot be bothered to read things properly. One at the Bethlem said “I have enough reading to do” He also said “lets start afresh” – how on earth can you start afresh when you should read back to see everything that has happened – it is easy to wrongly judge the situation or somebody unless you take the time and trouble to read things properly and this is the wrong attitude in my opinion.
Anyway, we have had a lovely time this weekend – it is good to be back to normal after being so ill over Xmas – going away to Brugge was the best thing and I seem to have even more energy than ever to pursue my greatest ambition and that is to see humane mental health care and a system that is 100% fair to the patient unlike at present where abuse is rife. I can see at first hand the full and shocking picture of MH care system and what is wrong with it- I almost feel like disclosing everything but the truth always comes out in the end besides more and more people are being outspoken so it is not just me.
I know that the team is reading my blog and I hope that they too read the wonderful books that I have purchased. I am willing to lend them all to you if you wish. Mr Burstow has my spare copy of Nutrient Power by Dr William Walsh and I am waiting for his comments. He asked me what I thought of the anti-stigma campaign and I wish that he would concentrate on more important issues like the enforced drugging / restraint and never ending sections and ECT which I think is barbaric. The Government also needs to look at the money being wasted to the taxpayer which could be better spent on A&Es rather than hugely drugging someone up that has a string of diagnoses and is treatment resistant. What a waste of money is going on without regard for physical health. Also private sector which Elizabeth has mentioned above – imagine 3 yrs or more of such care and then a care home hundreds of miles away from home and family.
So one of the main issues is why should my daughter be on a CTO? – perhaps the team can answer this and I would like the answer to be given on Twitter please. It costs extra money to put someone on a CTO but if they are complying with the chemicals what is the point of spending extra taxpayer’s money? This is a waste of money. Secondly if there is good reason for someone to come off the drugs because of physical health problems – I have not seen one decent facility – and yes, some people are taken off the drugs by the professionals themselves but only when they develop a very serious condition. The longer someone is on these drugs the more likely they could be affected by physical health conditions and the drugs should only be used short term and if someone develops serious physical health problems this leads to a greater burden to the NHS and more waste of public money. At a time when A&Es and maternity wards are being shut down it should be the Government’s priority to deal with the problem of MH care but as I am seeing more and more the care is not humane. Elizabeth does not feel she is ill despite being described this way and I agree with her – no symptoms have been seen since her return home. It is ridiculous in the circumstances that a team stick with one diagnosis when there are several others. It is insulting to the other professionals to ignore their expertise. I have been on a ward and the people there are supposed to be seriously ill yet I have found you can have a normal intelligent conservation and some patients are very gifted. This goes to show that under the MH system patients are not treated correctly. NICE guidelines are ignored when it suits and so is code of practice and medical ethics. The law is frequently ignored in terms of human rights. The main concern these non medically trained professionals focus on is “safeguarding” but I would tell the team that Elizabeth is very happy to be at home and keeps saying so. This is because it is a normal environment – I do not treat Elizabeth like she is ill – she is slowly regaining her confidence since coming home. The other thing is why should someone be labelled for life – the whole system is wrong in my opinion. There has not been one single problem. Most of the safeguarding occurs within the care institutions itself where in my opinion the facilities are far from safe.
Tomorrow Elizabeth will go for her blood test and is taken to the hospital by one of my carers. There is no need to panic like the team do – the blood test was carried out early being Xmas and we have not forgotten. On Tuesday the personal trainer is coming to the house and I am hoping to increase these sessions.
Turning now to an article I read in the Metro Newspaper I decided to write some comments on this. There was a picture of a young lady who had refused a gastric band – I briefly skimmed over the article and found it to be misleading and biased. Then I looked at the comments – I never “judge a book by its cover” – this is unfortunately what many people do without any question whatsoever. The first thing that came to mind was physical conditions and then psychiatric drugs can cause someone to retain fluid. I could not believe the abundance of ignorant comments by narrow minded ignorant people in many cases. My younger daughter age 13 was put on psychiatric drugs under section in hospital – unfortunately article wrongly reported in the Daily Mail in that “I reluctantly agreed” Oh no I did not. This article gave the impression that I went along with the team but under section no one has a choice. As a result I will never trust a newspaper again to report things properly – I prefer instead to get up and speak as a newspaper can alter everything and give the wrong impression so I am not taken in by the press. I am not gullible to believe everything I see except of course when reading what has been going on in the medical files! Nothing would surprise me there that is for sure. Getting back to this press article I could not resist putting some of my comments down and I have no regrets in calling one man ignorant with his comments or words to that effect. So people assume someone fat is lazy, ugly, etc etc. “Get down the gym and exercise” – this is something I have done for Elizabeth – take and encourage her to go to a gym. Elizabeth is on last resort drug Clozapine and this has made her gain weight – someone overweight could have a physical health problem and when I used to take Elizabeth to the gym for Zumba classes she felt dizzy like she was going to fall and held on to the side of the room. Elizabeth has complained of blurred vision and pain to some of her joints. Nevertheless Elizabeth got up, dressed and this was early on a Sunday morning to come with me to the gym. She is limited to what she can do – the level of drugs is too high and makes her feel tired so I did not give the drugs to Elizabeth before the zumba class as otherwise she would have been fit for nothing. When Elizabeth lived at the scheme she was not eating healthily but now she is home we do cooking together and I do not buy processed food or junk food. Elizabeth has gained weight due to the drug Clozapine and she also suffers from Agoraphobia. In six months we have had no help but many brilliant friends have been helping me instead and – in fact we do not need any help now and that in itself is saving the cost of a care home £1,150 per week.
The drug Clozapine affects Elizabeth’s memory and there are good days and bad days. She is making an effort and trying and I have a greater understanding by reading so many wonderful books and not biased newspaper articles. I think this article fuels ignorance and reminds me of similar articles regarding mental health – this is what causes stigma.
My daughter Elizabeth has been made disabled by the drugs they call “treatment” and by being institutionalised for years and money is being wasted by long and drawn out tribunals in addition.
I have found some very good care in the local area that I am happy to pay for privately. Elizabeth is benefit however she is disabled due to the drugs. It is like a life sentence to be on these drugs and no one will budge on treatment unless you prove what harm they are doing of course.