Archive

Monthly Archives: January 2015

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.

“Hi everyone

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.

THIS WEEKEND

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.

 

 

Advertisements

Spent a weekend in Bruges and what a fabulous place this is.  Since Xmas/New Year I have not been well with a virus that has affected so many but going away has done me good and it is always an eye opener when you see a different way of life.  I could see at first hand that in the surrounding areas and Bruges itself the lifestyle is better.  Could not see anyone on their mobile phones unlike in the UK and the lifestyle was at a much more relaxed and slower place.  A more healthy lifestyle where people cycled and I noticed gyms and apart from the irrisistable shops that sold an abundance of the most fabulous chocolates I visited the De Halve Maan Brewery with so many steps that led right to the very top where you could see fabulous views.  It was a relief to get down all those steps, despite the spectacular view. I found local people very friendly and hospitable, shops brilliant and  I would well recommend a trip to Belgium/Bruges to everyone. Elizabeth was being looked after by her sister and friends and taken out places but there was no way she would have been happy due to suffering anxiety and dizziness due to the drug she is one and with all the delays coming back due to the fire on Eurostar this would not have done her good either.  I did not arrive back in the UK until very late Sunday evening and was back at work the next day.   I could not resist imagining a different lifestyle to what I currently have- apart from the shops being superb – the entire lifestyle seemed more healthy – people walking out and a more relaxed lifestyle.  Elizabeth would not have liked the visit to the brewery as she is scared of heights.  Elizabeth would have been anxious getting on and off the trains with all the luggage due to the gaps between platform and train.  However Elizabeth is overcoming some of these fears and is being taken out frequently by my very good friends in the absence of any care being provided since her return from the care home.  I am delighted with the dedication of some of my carers who have been helping me from the start.   Elizabeth looks forward to their visits and this is enhancing her confidence by being taken out places.   I do the same at the weekend so she is getting out much more than ever before.  However the day has still to come when Elizabeth will go out alone which is what I as a mother would like to see.  I would like to see her as she was before going out places, attending gyms etc and classes.  We have a new Yoga and Pilates studio which is within walking distance just up the road.  There is a small gym around the corner.  There are places where Elizabeth could make friends and gain her confidence.  I do not treat Elizabeth like she has an “illness”  – I do not believe in the term “illness” in her case.  I will never forget when Elizabeth was diagnosed with paranoid schizophrenia treatment resistant and how she gave up on life on the acute ward.  Well I have since done my research on this title and can see how false it is and that there is no such thing.  I therefore wish for the correct title to be recognised in the brilliant report I have that has been ignored by the entire team as has another report by an expert who says Aspergers.  I have asked for proof and this has not been provided and so I have sought advice at top level by more than one expert who verifies there is NO SUCH THING AS SCHIZOPHRENIA.  If the team are reading this particular blog then please can you provide me with the scientific evidence required for me to believe such a diagnosis.  I would also say to the team that it is not just a case of one diagnosis but two that have been ignored by the bulk of them, some of whom are not medically qualified to make any judgement at all.   So I would ask the team to respond to this blog with the scientific evidence for Schizophrenia and my research has led me to look closely at NICE Guidelines.  If you look at this you will find that for the diagnosis of PTSD Clozapine is not recommended but intensive trauma therapy.   I as a mother have found therapy in the local area which I was astonished as I thought this was nothing but drug pushing but I have succeeded in finding good care that involves GPs who I thorough commend.  Elizabeth is very lucky she is at home and that there is such a thing as a natural health centre which I discovered by accident.  Hopefully the new treatment will start next month –  and I will write to NICE to advise them on the benefits of this fabulous care in order that they can include it in their guidelines.

I feel I have made a full recovery since going away and have more energy than every to pursue my dream of humane mental health care – something that does not existing in the UK.  I have renewed Elizabeth’s passport and the one place apart from New York ISPS Conference that I would like to visit is Finland.

I have big plans and ambitions for 2015 and am taking Elizabeth to all my meetings where you stand up and speak –  Elizabeth did this herself would you believe and just those few words she said was inspiring and I can see what progress she is making at home.  The answer is to give more support but not in a controlling manner.  I have been accused of controlling Elizabeth when in fact I would like her to be going out like her sister and living an independent life.  This is why I am providing the very best of care.   If you wait for the NHS you can wait for ever but it has worked out for the best as Elizabeth has shown no signs of any abnormal behaviour since coming home and that is not down to the chemicals.

Last of  all I shall be dedicating my next blog to the DWP following my latest letter from them and I would like to share things with everyone in this respect.

I was so happy to hear that Sandra of Chy Sawel has seen a suitable premises which is the news myself and other mothers long for.

At least Chy Sawel will not be drugging to the hilt like at local level and beyond on the appalling acute wards.

I am told that the level of chemicals my daughter is on is too high by more than one expert and I am not happy that nothing is being done about it/.  I shall be documenting this in full details in due course as I thought that the idea was “do no harm” – now I can prove everything and I hope that by doing this it will bring about the need for urgent change to a system that is not  working

I feel positive about the New Year especially in light of how well things are going at home with Elizabeth.    Today I asked her to walk on her own for a short distance up the road but she refused to go any further.  Complains of dizziness which I feel is due to the drug being given at quite a high level so I am told by more than one expert.

Despite the fact the A&E and Maternity wards have been closed there is no end of money to drug people like Elizabeth and I had wrongly thought that all the extra drugs were given by the care home. I notice now that these were being given for quite some time but none of us knew the level of drugs as at Cambian she only came home with the Clozapine and Metformine which I had removed as this was being given off label and is contra indicated.   Having had private tests done and looked into matters further this drug can only be prescribed off label by an endocrinologist and usually masks something wrong and the reason I took Elizabeth to see an Endocrinologist was that I suspected this fact and I was right to.

It has been six months now and no signs o any psychosis – no problems whatsoever and I do not put this down to the drug she is on at all –  I put it down to the correct environment ie home  Despite home and family being slated,  Elizabeth has settled at home nicely and adapted to everything better than any of us expected and this is because she is happy as she keeps remarking all the time.   Money is being saved to the local area as sending someone to a care home costs a lot and also private sector hospital care miles from home.   There is supposed to be a budget allowed for Elizabeth’s care but she has nothing provided in six months but in a way that is good.  At least no more negative  things can be said and recorded in the files as I can honestly say nothing but positive remarks on how well things are working out.

The whole family can be labelled if they challenge the team.   For example  popular word is angry and aggressive/hostile.   I object to my carers being called this –  they have been very supportive of Elizabeth and helped me enormously.   Obviously I am not popular from what I can see.  I am so lucky to have such good friends and the immediate family who have helped enormously.

I have been taking Elizabeth to events where people get up and speak and such events are brilliant in enhancing confidence and meeting with very inspiring people.  I think Elizabeth enjoys such events run by people who care about what is going on not just in the UK but abroad.

Most of my complaints looking back are about the drugs and long term drugging.  It is astonishing the fact that the entire team sticks together on what is clearly wrong and when you can confirm it by evidence all I can say is they go for the easy route – ignoring damage being caused is the easy route and I wonder how they would feel if this was their relative.  As much as I realise the system is to blame- a system that allows for forced drugging and restraint, CTOs and barbaric treatment there are plenty of staff that will happily go along with this.    I am pleased to say though that there are exceptions such as those I have met at the ISPS conferences and INTAR conferences and these included social workers –  I praise them all for their efforts as these are the people who I feel can really get heard –  it is not going to me or other mothers but the professionals and patients are ignored anyway.   It is a pity that politicians do not look at the situation faced by some mothers having sons and daughters on long term section.  I dread to think how much this is all costing the taxpayer.   So even if you are not directly affected in your family by mental health issues, what is going on has a backlash effect.   In that I mean  plenty of money is being wasted and it is being wasted on drugs and huge quantities of drugs that do not always work leading to hospitalisation, disablement and serious health problems leading to more drugging of a different nature and a burden to the NHS.   750mg Quetiapine – on top of this Haloperidal, Clonazepam, Lorazepam and skin medications and then paracetamol.   I thought psychiatrists were aware “do no harm”  –  then the team do not like to alter a dosage and one drugging regime is passed on to the next team.    Patients are quite often so weakened by huge levels of drugging that it is easy to control them and influence their way of thinking and psychiatry is all about control.    This is a lifetime of a sentence whereas in a prison drugs are not forced and an end to the sentence is forthcoming.  In psychiatry and these hospitals they are keeping patients for a very long time.

The system is wrong where in the family courts you cannot get representation  unless you pay £800-£900 per month and I am pleased to see a recent case was challenged in this respect.

The combination of  court proceedings re lengthy tribunals, long term hospitalisation, ill health caused by the drugs themselves and over drugging amount to a fortune that would be better spent on improving care in the community and on the wards themselves.

 

 

 

%d bloggers like this: