Elizabeth has given consent to share her note of thanks to close family friend and carer Krystyna who has gone out of her way to help us.

“I have become much stronger in character thanks to Krystyna taking me out places and I’m really feeling much better.  I went into town Friday and was not afraid as usual.  Today I did cookery with Krystyna and she is encouraging me to walk places and I would like to say thanks”

Elizabeth has been out every day this week with my friend and has had her personal trainer round.

Meanwhile Krystyna has just telephoned me with her concerns about Elizabeth.  All the team are concerned about is that Elizabeth is kept on drugs for the rest of her life and they refuse to accept any other diagnosis apart from Schizophrenia.  They have suddenly dropped “treatment resistant” yet she is on a drug for treatment resistant Schizophrenia.   She has about 5 different labels.   Anyway I too am concerned right now –  Elizabeth is complaining of pains to her legs and is very out of breath whilst out walking having to stop every so often.  Elizabeth has complained more than once about pains to her joints and we are very concerned right now.    Elizabeth has also complained about dizziness and double vision to myself and my carers.  We were out on Saturday together in London.   I took Elizabeth to my hairdressers and she looked very nice and had her nails done too.   After that we got a bus to a market nearby –  by the time the hair appointment finished it was too late to do all I wanted to do but Elizabeth need lunch so I took her to a nice Thai restaurant.   The last consultant psychiatrist refused to reduce the drug Clozapine even when asked by Elizabeth. I have been told by experts the dosage is high but no one seems to care. The team care more about getting rid of me altogether by any means.  I know of others on huge dosage of drugs too prescribed concomitantly regardless of them being contra indicated.

The NHS only provides a one off appointment with a nutritionist.  What a shame the NHS only provides 1 appointment, as it would be surely better if they provided more visits and saved money by less drugging   Whilst I am working in a full time job I am lucky to have such good friends who are helping and this is benefitting Elizabeth too who has spent the past few years in hospitals a long way from home where she was not allowed out and appeared to be going downhill not surprisingly when you look at the “treatment” below.    It is benefitting her to be amongst family and friends at home and not in an oppressive environment with others who are seriously ill and Elizabeth said she is happy to be at home.  She is behaving normally without sign of  “symptoms” and now it is over six months at home. Apart from physical conditions have seen and agoraphobia there is nothing to fit the diagnosis of Schizophrenia but Elizabeth would not be fit for work for instance because of the effects of this drug for which no one wishes any reduction to be made by the looks of things.    Here below is an example of the “care” my daughter has had under both NHS and private sector and from this you will see my point about a one off dietician appointment.  It is no wonder there is no money for the NHS with this huge amount of drugging going on resulting in physical illness.  The NHS is wasting money on excessive drugging and without proper tests to see if a patient can metabolize them, thus doing more harm than good to the patient in cases where someone is treatment resistant for instance.

Local Hospital:  750mg Quetiapine; 1mg Clonazepam; 4mg a day Lorazepam;5-10mg Haloperidol; (30mg max)  – skin medications were also given such as Lymecycline –  being on all of these drugs and Quetiapine has also been given at 800mg.

Bethlem Royal Hospital:Clozapine liquid 150mg; Bisoprolol 1.25mg; Metformine liquid 500mg Aqueous cream; Lorazepam 1-2mg; Promethazine 25-50mg; Olanzapine 10mg; Quetiapine 750mg then they reduced it to 600mg – so much for the drug free period promised by Professor Murray!

This puzzles me:

Cambian Healthcare:Clozapine raised to 350mg by Dr A W.  Metformine 500mg – so how come the rest of the chemicals were not given when Elizabeth came home from Cambian –  I must find out for sure.  I complained about the Lorazepam and Metformine which the team said was being given for weight loss but I pointed out to them it was off label.  The GP told me he could see no reason why this should be given and immediately took her off the Metformine quite rightly so.   However I found out that Metformine and Clozapine are contra indicated drugs and should never have been given off label and I told the Tribunal that what they were doing was wrong.   When I explained to two members of staff at Cambian the drugs were contra indicated they looked to the floor.  At this private hospital (Cambian) funded locally I was accused of missing a tablet of Metformine yet I pointed out this and Clozapine are contra indicated so they were in fact doing wrong. I am interested in what the care home are saying that she had been on this large amount of drugs all along for quite some time yet we were unaware of this as we were only allowed short visits despite her being in Wales and only saw Metformine and Clozapine given- no other drugs.  This drug should never have been given in the first place –  It is after all for diabetes.  Surely if my daughter had diabetes the team would have told the family ?  They assured me it was for weight loss and then I found out that only an Endocrinologist could prescribe this off label and for what reason was it given.  Well I have found out why with £1000 worth of private tests and in addition I have found out other disturbing things too.

Care at the Care home:  350 Clozapine; Bisoprolol 1.25 mg; Senna; Lorazepam as and when required.

At the care home I thought Elizabeth was only on 350mg of Clozapine but got a nasty shock when I saw the drugs chart  and when I complained I was told I was no longer next of kin    Elizabeth told me she was being put under pressure by a member of nursing staff to choose between Mum or Dad –  so she was capable of telling me this on not just this occasion.  I can confirm what was going on there now as I know everything having acquired all the files and £1150 per week is being saved to the taxpayer.  “who does she want to visit?”   –  well Elizabeth wants to see both parents and nurses should not be getting involved in family relationships and I was amazed that the person carrying out an investigation into my complaint said that this was standard practise but I would point out that there are no nearest relatives if someone is not on a section so it looked to be like something was happening there and I was absolutely correct and no delusion on my part.

We were given so much attention by the home treatment team who would not stop visiting but they carried on regardless and writing their reports – which I now have.  Some of them asked intrusive questions and I was quite right to think they were reporting back everything.  There was no need for their continued visits as they had done the titration of Clozapine so they were not offering any help – it was harassment – phone call after phone call, visit after visit “go in twos”   “record everything that mother says”.   Well there is no need to record everything as I am writing in a very honest and open manner here on my blog which I hope Elizabeth will take over one day.   It seems unfair that we got so much attention when it was not wanted when others are crying out for attention and help.

We are now waiting for an appointment to see the new consultant psychiatrist to transfer to another team but I am sure I will know people in that team.  In the local area the A&E and Maternity wards have closed.  It would save money if they cut back on the level of drugs given to my daughter who is treatment resistant but too much emphasis is put on risk to self or others when no one cares what harm they are doing to my daughter and I thought a psychiatrist must  DO NO HARM.  As you can see concomitant prescribing  at high level – max dosage of Quetiapine and Olanzapine – these two drugs given together at the same time.  These  drugs are not making my daughter better they are causing harm to her and now I can see everything and nothing surprises me – the long term drugging of patients causes harm and this should be investigated – I know that patients are taken off the drugs in a horrific way if for instance they develop a blood disorder or serious condition. The drugs are for one purpose only – to control someone –  I am pleased to say Elizabeth is starting to open up since coming home and talk to me about past experience without any prompting from me at all.  I have learned a lot by reading the correct books which should be read by everyone in the profession as nothing is being done properly.

Emotional Health by Bob Johnson (what are emotions and how they cause social and mental diseases)  I wish there were more consultant psychiatrists like Dr Johnson and this book has given me a greater understanding.  (www.TruthConsent.com

“the emotions described in this book are the real thing – and they can be deadly.  However, nothing written here excuses nor remotely justifies any atrocity but if we don’t look at the reasons why they occur, we can never prevent them happening again, and again, and again and again .  If we do, we can.”  sychiatrists are taught that emotions don’t matter and I agree with Dr Johnson that emotions need to be understood and- how right he is.      I would thoroughly recommend this book to all students of nursing, psychology and psychiatry.  I would also recommend it to patients to read and parents.

I am waiting for one more book to arrive by Dr Moncrieff – I wonder if these brilliant books are available in the library as they should be – another person I am in touch with said he had difficulty in getting a book by Dr Peter Breggin in the Library –  I must go down to the local library to check on this.

In the press I have noticed some interesting articles:

–  NEW STATINS BOMBSHELL – medical experts angry that doctors will be paid to prescribe the controversial drugs to anyone at low risk of ever developing heart disease – could mean 1 in 10 adults put on regular doses.  Well I am not going to be one of them.  If these doctors really cared I would challenge them to look at Elizabeth’s drug of Clozapine and assure me they are doing no harm.  I thoroughly agree with the fact medical experts should be angry but the term “angry” is something I could never describe myself –  you should see what has been written about me!  “part of the doctors’ complex funding depends on meeting Government targets.  Well Elizabeth and I do not want these drugs that is for sure.  In the Prescriber Journal it is warned statins do nothing to increase life expectancy for low risk patients.  Health Professionals have until Feb 23 to send comments to NICE.   Congratulations Sunday Express for this wonderful Article however  there is another article featured about Dementia cure within a decade and I am cautious about this when Alistair Burn’s – clinical director for the brain disease (NHS England) mentions drug – Aricept slowed down the process but when my father was taken off he rapidly went downhill and ended up in a wheelchair.

Daily Mail:  NEW WELFARE CRACKDOWN ON WORKSHY

So David Cameron is determined to ensure welfare is no longer a “lifestyle choice” .  Well Mr Cameron how about rewarding the carers who devote more than normal working hours looking after those who are severely disabled.  A paltry £65 a week does not go far does it?   Why should someone have a label in order to get disability benefit.  Elizabeth is at home now and no longer is the cost of £1150 per week paid to a care home.  In addition I have further saved money by avoiding the team putting Elizabeth unnecessarily on a CTO.  As a taxpayer myself I would like to know how much this cost??  There  are no symptoms so no need to put her on a CTO – so  I am lucky thanks to close friends and family to be able to work but many cannot and you are doing nothing about those who care for others which is more than a full time job and I would know because my father had Alzheimers.  Re my daughter, sadly she is so drugged up thanks to 350 mg of Clozapine which is not recommended for the diagnosis of PTSD as I do not accept Schizophrenia or paranoid Schizophrenia – show me the scientific proof – there is evidence for PTSD and I wish to know why this diagnosis being ignored when the report, denied to my daughter by the team is 100% accurate and perhaps you and other politicians should investigate the huge amount of taxpayer’s money being wasted under the NHS through drugging long term of psychiatric patients and as for my daughter if she was not on the level of drugs and this particular one maybe she could have a job so this is where facilities need to be provided like Chy Sawel and reductions done on the high level of drugs in a proper humane manner so that people like my daughter who are not happy with being labelled or drugged can have choice.  There is the expertise in the UK to be done and I and other mothers are fed up with the shocking care in this country and if you wish to look at savings in money then psychiatry is an area that needs close attention.   Whilst writing I would point out that I am far from happy with the DWP –  Elizabeth has been in “care” – the Royal Bethlem, private sector Cambian and a care home and now she is home and thank goodness for that as when I saw the drugs being given I was absolutely appalled.   I was also appalled to read all about what has been going on in the name of “care”.   Anyway I am appealing against their decision –  people who sit behind a desk have no idea how disabled people are coping and what support they need and instead of refusing help to the point of making some desperate they should come and visit that person.  Not everyone can come down to their offices and they should appreciate that.  I do not think anything is being done fairly in the UK.   What you should be doing is cutting back on the drugging of psychiatric patients and providing more therapeutic care as the “care” of drugging is not working for everyone.

Also featured in Daily Mail – Elderly “illegally restrained in care homes”   –  well I think this should be made illegal under the mental health.  If someone is not posing a threat to others and may not wish for instance to take the drugs by injection then they should be respected.

As for Deprivation of Liberty – is this supposed to be a civilised country!    This is more like the dark ages.  Most people would wish to be in their own homes and most have capacity – they should not be subject to  bullying and harassment that goes on when social services wish to force someone back into care and they do this by any means such as depriving a drug like Clozapine for nearly four days.   All of this is costing a fortune – thousands are being spent on every court case.   Whilst you are looking to cut benefits I can prove to you where the money is being wasted.  Elizabeth has capacity and did not want to go back to the care home where she was expected to choose between parents as next of kin when not even sectioned or on a CTO.  I have saved money by having Elizabeth home and without support.  The care home were already calling her father next of kin and refused to release the drug Clozapine or speak to me over the phone saying I was not the next of kin.   I am sure you will agree that this needs to be urgently addressed.  As Elizabeth is ‘treatment resistant’ it could be that she cannot metabolize the drugs – then this treatment is a complete waste of taxpayer’s money.

Message to the Team –  you are supposed to do no harm –  here are Elizabeth’s comments  “I will be glad when its all over Mum – I wish they would leave us alone” .   Elizabeth is just one case – there are many; more suffering and parents who are heartbroken who have their sons and daughters on never- ending sections in the UK.

I would like to feature one such group of patients/former patients/parents and a group who wish to change the NHS for the better and also care in the community.  These are the people who should be listened and their ideas taken on board such as Crisis Houses and then there are the mothers and fathers of patients, (parents of some patients whom are incarcerated long term at huge expense to the public unnecessarily) who wish to see holistic care and minimal drugging and centres like Soteria and Chy Sawel set up along with Open Dialogue – this is something the SOAP Group would like to see along with an end to the barbaric treatment of ECT.   I would like to see choice as everyone is different.  Some like my daughter are unhappy to be labelled and no wonder why when you look at the files and see so many of these labels along with the effects of the drugs etc.

Message to Mental Health Cop   –  I wish you would stop calling acute wards “safe” places –  well in my opinion that is not the case.  They can also be traumatic for some and untherapeutic and should not be used long term.  If only there was open dialogue and emphasis on nutrition as the best thing about the private sector was the food was better.

The Avengers Fights Back wishes to accumulate stories from people who have experienced mental health services in order that changes can be brought about.

The SOAP group wishes to bring awareness and campaigns against forced treatment of patients and ECT but both groups and others I belong have one thing in common and that is to see improved care under Mental Health and I  have pointed out a few things above and throughout my blog.

I would also like to commend SWAN  – Social Workers Action Network –  you have the right idea and I would have no complaints with your agenda for change.

Anyway we await an important meeting with the new Consultant Psychiatrist  hopefully this week –  Elizabeth did not want to be in last time but I understand in order to see the new consultant psychiatrist we have to go to their premises and so I will have to take a day off to come to this meeting with my carers and Elizabeth.   Elizabeth wanted to go out last time but all we wish to know is the new procedures under this team who will be taking over.   I will let you know how we get on with this important meeting in due course – it is essential that this meeting is arranged soon due to concerns regarding Elizabeth’s physical health.

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.

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.

Christmas went well this year and it was wonderful to have Elizabeth home and not have to worry about who was going to drive there and back as in previous years and at Cambian we were really limited – 1 day and 1 night to share between all of us but now things have changed.  Elizabeth is not on a section or CTO and at home with the family and doing well and she is happy and so are we all.  The only thing that has spoilt Christmas for me is being so ill.  I have a viral infection that has led to a cough and unfortunately this wont go.  Yesterday (Boxing Day) I had a break from Elizabeth as she went to see the rest of the family and today I took her shopping in the sales.   Today Elizabeth complained of feeling dizzy on the drug Clozapine and would not let go of my arm.  She said she felt like she was going to fall.   Every day she has to lie down after taking this drug but usually after a while she is OK but dizziness is certainly a factor with this drug and she also complained of sharp pains and headaches today.  I took Elizabeth to the Neurologist just before Xmas and we have another appointment lined up.    Elizabeth is being transferred to another team –  I thought it was called the Enabling Team but now I am told it is the Crisis Team and they are based in the immediate area whereas the rehab team are based much further away.

Since nothing has been provided by the team I have arranged a therapist to come to the house on Monday. I was most impressed to see there was something good in the local area – a natural health centre and a few GPs seem to be involved and I like this as I thought there was nothing good – only drugging.   Of course the care I wish to provide is NOT available on the NHS.   What a pity but this did not surprise me as the bulk of the care has been one drug after the other and when all of these failed a transfer miles away first to the Bethlem (Bedlam) or as my daughter calls it “hell on earth” and then to Wales to Cambian and of course then the care home hundreds of miles away where there was a poor signal in the room and we could not get through on the phone.  Of course once under such establishments contact with families are not always encouraged as in my case –  it reminded me of a religious cult when someone is under the control of the team.

I am delighted that Elizabeth is responding well to the personal trainer and I plan to increase the sessions to twice a week.   I just want Elizabeth to be able to go out on her own – she is like a prisoner of her own mind now thanks to being hospitalized for so long – it has not done her any good that is for sure. Elizabeth has made huge efforts since coming home and is getting on with everyone in the family but needs prompting with most things. I as a mother would like her to be independent – with the level of drugging going on at the care home and whilst she was away how on earth can anyone be expected to function.   Well Elizabeth has asked to be reduced to a lower dosage of Clozapine as the level she is on is far too high.  Clozapine is contra indicated re heart conditions and I have seen in the files (I have been going through these with Elizabeth) that something has shown up in an EEG report –  well all the more reason to reduce this chemical and also the fact that sharp arm movements have been noticed when walking and the neurologist was most sympathetic to this.   I have also spent £1000 on private endocrinology reports and was most disappointed to find these had not been scanned onto the GP’s computer system.  Despite being so ill I went and got these and insisted that they be scanned as they are relevant too –  so much for the diagnosis of “paranoid schizophrenia treatment resistant” when all along I have proven there are physical health problems and shockingly these are not being addressed and nothing is being done about the level of Clozapine. Now there is a new consultant psychiatrist I have yet to meet  –  Elizabeth has two diagnoses the team have ignored ie Aspergers and PTSD.  I as a mother cannot ignore these and I have full reports –  so unless there is scientific evidence re Schizophrenia I am afraid I cannot accept this diagnosis and treatment resistant means poor or non metabolizer.  I feel that Elizabeth is not getting the correct treatment according to NICE Guidelines and the BNF does not recommend Clozapine for conditions such as TD.   I hope the new consultant psychiatrist is nice but I will soon find out – Elizabeth has made more than one request to be reduced off this drug to a lower dosage – anyway I will let you know what happens in due course.   I will also give you full details of my forthcoming speech alongside  Elizabeth and her sister  – it is only fair that they are present in case they themselves wish to join in and speak.      I do not hold meeting after meeting in secret like the team – I prefer to speak openly and honestly and I will be basing my speech on evidence.

It was good recently to meet some wonderful people that I have become acquainted with via the ISPS conference and what brilliant professionals you get to meet at such events.   I see they have a conference in New York – how I would love to take Elizabeth to see New York and I would also like to take her to Finland where they have open dialogue –    there is no need to drug to the hilt patients like they do in the UK in the most inhumane way by forced restraint and CTOs.   In Finland they have the right idea and it is no wonder in Tornio they have 95% success rate – well I want to see this for myself and take Elizabeth who spent the happiest time of her life working there once before being prescribed all these chemicals.

Wednesday, 10 December 2014 from 17:30 to 18:30 (GMT)

Schizophrenia Genetics: settling the score

Speaker: Professor Michael O’Donovan, MRC Centre for Psychiatric Genetics & Genomics

Chair: Professor Anthony David

Vote of Thanks: Professor Sir Robin Murray
Wednesday 10th December 2014

5.30 – 6.30pm

Wolfson Lecture Theatre

A reception will follow in Seminar Rooms 1 & 2 from 6.30 – 7.30pm

Biography

Professor of Psychiatric Genetics Michael O’Donovan studied both Physiology and Medicine at Glasgow University, Psychiatry in Paisley (Scotland) and Cardiff (Wales) and genetics in Cardiff and Boston (USA).
Clinically, Michael specialises in diagnosis and management of schizophrenia and psychosis.
Michael has published over 300 scientific papers into molecular genetic studies of psychotic disorders, as well as a range of other disorders including ADHD and Alzheimer’s disease.
Michael leads a large international schizophrenia research consortium and is also the Academic Psychiatry Lead for the Royal College of Psychiatrists in Wales.

It was good to go along to this event held at Institute of Psychiatry and I met up with a few others who have been affected. After the event you can speak to the professionals involved and I was keen to show Professor O’Donovan the leaflets relating to my website.   I mentioned how I as a mother wish the label of “paranoid schizophrenia treatment resistant to be lifted – a patient should never be labelled for life and I do not agree with this label at all and neither do I agree with the label of ADHD.   I am at the same time not dismissing that there are symptoms but these symptoms are being misdiagnosed.  I have already proven Elizabeth has a physical condition and I want something done about this inaccurate label as the longer time goes on now Eliozabeth is at home there are NO symptoms and that is not because of the chemical Clozapine it is because Elizabeth is happy at home for a start.   Of course I am well aware if she was to come off this chemical which I just cannot call a medication, there may be problems but any problems experienced would NOT be as a result of a condition for which a bio marker has never ever been found.   One of the people I know who attended told me of cases where someone had successfully come off drugs but went through the process of “madness” first and then with that out of their system they were simply able to get on with their lives like never before.  I think it is wrong to suppress someone’s emotions by way of drugging and I do not believe drtugs should be given to someone who is treatment resistant (poor or non metabolizer).

The treatment of Alzheimers patients is wrong too so I believe – here is the treatment of my father which led to him having a heart attack:

Asprin 75mg

Omepraole 20 mg

Movicol

Temazepam

Perindopil

Quinapril 25mg

Attenolol

Quetiapine

Diazepam

This is wrong to give all these drugs to an elderly man in his eighties. By the way I am forbidden to talk about my father’s case and that says it all.

ADHD:

There is only illusive evidence for such a “disease”, the ADHD lobby will quote hundreds of papers written and claim scientific foundation for their belief. The existence of inconclusive research projects based on faulty methodologies and apparently there is no scientific evidence – unethical and deceitful statements made by those calling themselves scientists.  Consensus is far from proof – it is in fact a poor substitute for a lack of evidence and science was never advanced by consensus.  Consensus is the product of belief and not evidence.  Science is about questioning and the philosophy of science is doxasticism. The methodology of science is empiricism. Doxasticsm is a virtue by which the searcher after truth aspires to it by applying doubt and avoiding dogmatism and scepticism.  Consensus has no part to play;  the virtue of doxasticism allows us in our search for the truth to accept results that do not fit in with our preconceived notions and to courageously accept that we may never find the truth.

Empiricism is about being able to measure the results of our experiments and much more importantly for them to be repeated and tested by other impartial observers.  It is not about believing that this rock weights fifty tons it is about devising a method that can measure it and one that others can measure our findings by.

The belief system employed by the ADHD lobby can never assimilate such a philosophy or such an empirical evidence analysis.  They speak in absolutes without substance.  They quote authority in forms of belief and consensus without qualitative or quantitative evidence – the language of dogma not science.   Behind the individuals who love to describe themselves in terms of consensus is the huge power of the multi-national pharmaceutical companies who make astronomical profits from peddling of such fabricated diseases.

On the day there is proper aetiology arrived at through empirical validated and repeatable scientific study, on the day when there is proper diagnostic formulation, not a value judgement based on consensus ADHD will exist as a disease.

The Weekend

Today I may meet up with former patients and take Elizabeth shopping.  I am having to wait in for a plumbing contractor to arrive first. Last night I went to a very nice works do in Barnes – have been ill for the past week with a cold that developed into a terrible cough but these things are unavoidable when you travel regularly on crowded public transport every day. There is a lot to sort out before Xmas and hope to get as much done as possible today as well as catch up with friends

Elizabeth has the diagnosis of PTSD yet the team like to stick with paranoid schizophrenia.  In a most recent report the word treatment resistant seems to be dropped yet the team continue to treat Elizabeth with a drug(Clozapine) which is for treatment resistant schizophrenia.  I  do not accept this label of Schizophrenia.    I do not believe there is such thing as this label and underneath this label for which no bio marker has ever been found that there are problems of a physical nature.  It is wrong that such a label be given when the treatment may be completely wrong for the true underlying condition and why should a patient be labelled for life.  I am now seeing at first hand how inaccurate information is in the files and Elizabeth and I are amazed –  how can a professional go by such files written by some who may have a grudge and get an accurate picture especially when families are excluded. This applies particularly so in cases where there is disagreement not only with the treatment concerned but with the label given.

Such a label “paranoid schizophrenia treatment resistant” can be most damaging and Elizabeth kind of gave up on life not surprisingly but I have spent hours and hours looking into matters and it is only when you thoroughly look at research papers and seek the professional opinions of those who are  up to date with knowledge and read the right books that the horrific truth is revealed.

HOW MANY ARE BEING MISDIAGNOSED WITH THE ABOVE CONDITION WRONGLY AND SUBJECT TO A LIFETIME OF DRUGGING.  NO HELP OR FACILITIES GIVEN FOR SOMEONE TO BE REDUCED OR COME OFF THESE DRUGS.  PHYSICAL HEALTH IS BEING OVERLOOKED IN FAVOUR OF LABELLING SOMEONE FOR LIFE AND DRUGGING THEM FOR LIFE.  WHAT A WASTE OF TAXPAYER’S MONEY AND THESE DRUGS CAN THEMSELVES CAUSE THE VERY SYMPTOMS THAT PSYCHIATRISTS STATE ARE ASSOCIATED WITH THE CONDITION OF PARANOID SCHIZOPHRENIA TREATMENT RESISTANT.

Coming off such drugs is of course dangerous but there is the knowledge and horrifically some have to be taken off in the most horrific manner but only when they develop something like a blood disorder for instance.   I think it is a very cruel system that labels someone for life with a fictitious label and it shows that the system is uncaring the way that patients are forced  to take drugs for conditions they may not even have and the law is on the side of these so called professionals.

Well I will always stick with “there is no such thing as paranoid Schizophrenia Treatment Resistant and Elizabeth has PTSD which is a condition backed by research that is overlooked by the team, many of whom do not even have medical qualifications and yet involve themselves with the pushing of chemicals.  Yet another thing wrong with this rotten outdated system.

Elevated adrenaline or cortisol may be evidence that someone is suffering PTSD (or under chronic stress) but are probably best seen as a result of the disorder, (or of a chronically stressful environment) not as causal factors for PTSD.

In some life circumstances, (eg combat soldier, refugee from warzone, living as a victim of child abuse or domestic violence) the symptoms we call PTSD are perhaps best viewed as functional adaptions to the environment. I’d suggest that there are some life circumstances in which you want to sleep lightly, be hyper-vigilant, suspicious of the motives of others, etc. It is only a disorder if these behaviours persist when you are no longer in that environment.

As I believe has been mentioned above, there is a polymorphism in the serotonin transporter gene (locus, SLC6A4 ; variant, serotonin 5-HTTLPR) which affects vulnerability to PTSD.

People with one or two short alleles of the transporter gene are more likely to develop symptoms of PTSD after exposure to traumatic life events than people with 2 long alleles of the gene. People with one or two of the short versions are also less responsive to CBT or to pharmaceutical treatment of PTSD than people with two long versions.

So, the short alleles of this gene are a biomarker for vulnerability to PTSD, but it is VERY important to stress that they are neither sufficient nor necessary to cause PTSD, (ie you need to be exposed to the right sort of stressors whether you possess the shorter alleles or not in order to develop PTSD; and people without the shorter variants may still develop such symptoms if they are subjected to sufficiently traumatic  life-stressors).

This is clearly a gene-environment reaction. Anyone can develop PTSD, but some of us are far more vulnerable.

Genes are potential, not destiny. We are all phenotypic expressions of our genetic potentials being unfolded within complex and fluid physical and social environments. Jared Diamond coined the phrase “nature via nurture” (as opposed to “nature versus nurture”) to describe this dynamic complexity.

Serotonin transporter poly-morphisms, social supports, and liability to PTSD ;

DOI: 10.1176/appi.ajp.2007.06122007

http://ajp.psychiatryonline.org/doi/abs/10.1176/appi.ajp.2007.06122007

Serotonin transporter poly-morphism and response to CBT;

http://dx.doi.org/10.1016/j.biopsych.2010.03.016

http://www.sciencedirect.com/science/article/pii/S0006322310002453

Adding to the importance of considering the environment are studies like this one;

<<< Stratified analyses indicated that the “s” allele of the 5-HTTLPR polymorphism was associated with decreased risk of PTSD in low-risk environments (low crime/unemployment rates) but increased risk of PTSD in high-risk environments. These results suggest that social environment modifies the effect of 5-HTTLPR genotype on PTSD risk. >>>

doi: 10.1093/aje/kwn397

http://aje.oxfordjournals.org/content/early/2009/02/19/aje.kwn397.full

Good concise discussion of short allele, PTSD, Panic Disorder, and response to pharmacological treatments, here;

http://www.psycheducation.org/mechanism/2OtherShortsEffects.htm#PTSD

2 x short allele, 1 x short allele, 2 x long allele and liability to depression and other problems;

http://www.psycheducation.org/mechanism/1MoralityorGenes.htm#sobo

I attended this international conference with Elizabeth at the Tavistock Centre.  Elizabeth said she would be happy to take part in any future research programmes but once again I am hearing the same old story about lack of funding for any therapeutic care.  I as a mother am happy for a different approach rather than more and more mind altering drugs and Elizabeth has responded much better to alternative care but I have had to provide this myself and I think it depends on the area where you live as to whether you get this kind of beneficial care or not.  Elizabeth did say that CBT helped whilst she was a patient on the wards but nothing is provided in the community and in six months, Elizabeth has had nothing apart from what I provide myself.

I would recommend joining ISPS, particularly for professionals, in order  to keep up to date with the latest developments and to hear from Professionals such as Dr Bent Rosenhaum and how such care has benefitted service users which I was most interested in.   It is a shame so much money is being wasted. This could go instead towards a research programme and provision of such care, which could benefit my daughter and others who do not get on with the mainstream care of drugging.   I bought another book at this conference entitled “Understanding and Treating Patients in Clinical Psychoanalysis by Sandra Beuchler. There were clinicians, researchers, service users and carers who attended this event and I know most carers and service users would like to see choice and there is none at present.  When a patient goes onto an acute ward then drugs are all too readily on offer.  In view of the increased demand for beds and overflowing wards, a different approach is needed and I feel a patient should be treated as an individual.  In the current climate of austerity and evidence-based practice research can play a crucial role –  how I agree with this.  The event was held at the Tavistock and Portman NHS Foundation Trust and I found it very beneficial to attend.

More therapeutic care is what is needed as in this case, we are seeing some signs of physical decline shown by recent endocrinology tests and all the more reason to rely less on these mind altering drugs and look to a different approach.  I am told that this may not suit everyone but it is better than drugs.   No decent doctor should ignore physical illness in favour of pushing drugs to the maximum yet they do and do not check to see if drugs are contra indicated or care if there are adverse reactions and complaints of side effects.  I am told the dosage of Clozapine is too high right now and in any case Elizabeth has asked for it to be reduced However the consultant psychiatrist and team are ignoring this fact along with her request.   So I feel it is very wrong that a patient should be forced to take drugs for the rest of their lives regardless of physical illness for the sake of convenience and this is why there needs to be better facilities because to be able to do anything effectively there needs to be the facility such as Chy Sawel and Soteria.  A patient should be listened to by a psychiatrist instead of ignored.

The new social worker came again last week but I was out at the time and the carer told me there is going to be a new care coordinator appointed with medical background who I hope to meet this week.  I understand Elizabeth mentioned about the ISPS Conference we were going on and that is a good thing so that the team themselves can be aware of the benefit of them attending in future.   I am re- joining ISPS next year and Elizabeth will also have a membership.   I am very interested to hear that they have a conference in New York.  I very much like New York but did not have much time to look round last time.  I would like to take Elizabeth to see New York and am going to find out whether this will be possible.    If Elizabeth can stand amongst huge crowds at Winter Wonderland yesterday evening then I am hopeful that I can take her abroad to  New York and Finland -we are having no problems at all with Elizabeth so I have no idea why the team persist in labelling her as they are doing when the correct diagnosis is PTSD – which is backed by research.

At Winter Wonderland when we eventually got in, the crowds were huge.  We had to queue for a long while but it was a good evening and party atmosphere.

I have two days off next week- lots of appointments planned. The Neurologist appointment has been arranged and I must speak to the GP about the dietician following the private Endocrinology tests and the other tests I had done for Dr Walsh which the team have  ignored.  Whilst the  GP cares about physical health, the psychiatrist  experiments on different drugs.   Despite saying this there are a few who are good but the majority of psychiatrists do not seem to care about physical health and choose to ignore side effects and just raise the drug or give another drug or several at a time.  I wonder if they are up to date on their knowledge on these chemicals as they don’t look properly at the files for instance a consultant psychiatrist at the Bethlem said he had “enough reading to do” – they are not interested in looking right the way back in the files and want to start afresh and this is wrong in my opinion as a consultant psychiatrist should know what happened to that person in great detail and that can only be achieved by reading the files thoroughly.  Anyway I am looking forward to attending a specialist seminar on 10th December about Schizophrenia Genetics.  Professor Michael O’Donovan is going to be speaking who specialises in diagnosis and management of Schizophrenia and psychosis.  My father had Alzheimers and this is another speciality of his including ADHD –  I hope I get the chance to speak to him  –  Professor Michael O’Donovan leads a large international schizophrenia research consortium and is also the Academic Psychiatry Lead for the Royal College of Psychiatry.   This is the 15th Paul Janssen Lecture.

The last lecture was “Preventing Schizophrenia – easier than you think?    – Prof John McGrath, Queensland Brain Institute, University of Queensland, Australia, Prof Tony David –    I would entitle the lecture “obtaining a diagnosis of schizophrenia is easier than you think” 

Changing the subject, today I have put up Xmas tree and decorations –  still have a lot of shopping to do and must go to Westfield Shopping Centre –  Both centres are very good but the nearest to me is Shepherds Bush.   This is a fabulous shopping centre and this year I will take Elizabeth there to do Christmas shopping.

I was delighted to see advertised at a local health store this event last Wednesday about a treatment I had not heard of before and I had not even heard of the local Natural Health Centre.   I am all for alternative care as after years of drugging and a string of different diagnoses my daughter’s physical health is being affected as I have proven and I do not want this fact ignored by any of the team.  I was happy to see that some local doctors were looking for new approaches and this may help Elizabeth.

Elizabeth did not feel up to coming but no wonder why having taken the evening dosage of Clozapine.   After taking this chemical she has to lie down – that is the effect of this drug which is supposed to be used in cases of “treatment resistant Schizophrenia”  –  however this means poor or non metaboliser so I cannot understand why this chemical is being given when clearly there is a problem with metabolism and this could be doing more harm than good.  Anyway it is NOT recommended for the new diagnosis of PTSD.  I also cannot accept that a report which is highly accurate has been ignored and deprived to Elizabeth and I have made sure that she knows about this report which everyone in the family agrees with.  The team like to say she has Schizophrenia but have not come up with any scientific evidence to prove this whereas I have a full report that states PTSD by a consultant psychiatrist of many years experience which we are all in agreement with.   When someone is trying to withdraw from ANY drug they suffer withdrawal symptoms and sometimes patients are so affected by the side effects they are desperate to come off them yet are forced to take these chemicals and they do not address the underlying causes so in actual fact it is a complete waste of money.  It is a huge waste of money when a patient cannot metabolise the drugs and something should be done about this problem.  The less drugs pushed the more money saved and if there were decent centres like Chy Sawel then this would look at more than just drugging – physical health and nutrition and therapeutic care.

Anyway, I had a chat with some of these specialists and was impressed with what I saw of the Havening Therapy –  two people from the audience who had very real phobias/suffered trauma were helped.  If they can be helped then there is hope for Elizabeth and anything is better than more and more mind altering drugs.  I took away with me some literature “How may Havening Techniques help you or your clients? – treating phobias, panic attacks and chronic pain.  Treating emotional responses resulting from traumatic events.  Helping people let go of grief, anger and fear or stress responses.  POST TRAUMATIC STRESS DISORDER –  well I have nothing to lose  by referring Elizabeth to these excellent doctors –  the way I look at it is “nothing ventured nothing gained” –  I will never know until this is offered to Elizabeth and no doubt this is not on offer under the NHS like it should be.

“Havening , also known as Amygdala Depotentiation Therapy (ADT) is going to change the face of therapy across the world.  What used to take months to cure can now be done in minutes in most cases.  PTSD, trauma, pain, depression and many more disorders.  The initial study recently completed by Kings College London shows the remarkable effectiveness of this extraordinary set of processes.

At last I have found something decent in the local area and shall  be contacting these doctors and making appointments for Elizabeth.  Now I have discovered the local centre of Natural Health that hold regular events which I can go to in the evenings and I look forward to attending things like workshops to teach practical skills ie aromatherapy, homeopathy for instance – meditation evenings and courses – information /evidence to support therapies which will enable patients and doctors to make the best choices about treatment within the NHS.   Well that sounds interesting –  I am always interested to hear of best choices as this is something that has been overlooked in Elizabeth’s case but maybe now I know what care is available this can be given to Elizabeth instead of all these drugs especially in light of her diagnosis of treatment resistant.(poor or non metaboliser).

I am very impressed to see there is more than one GP involved and I have decided to join this organisation.

I shall write to some of these contacts tomorrow to enquiry about joining.

Today I have taken Elizabeth to a very nice vegetarian restaurant and then we did shopping and I discovered another very interesting place where you can get a variety of health drinks and products.

Tomorrow I am going to a craft fayre with Elizabeth and close friends I have known for years.

The social worker came to see Elizabeth and I believe is trying to arrange a meeting –  I have had to use up nearly all my holiday when the team deprived the Clozapine and I had to go to lengths to get this chemical  otherwise I knew that the team could accuse me of depriving the drugs like they have done all along.  So it is difficult but I have a day off soon for the Neurologist appointment so I hope they can fit this meeting in around my busy schedule of appointments.  I wonder what is this new team that Elizabeth is being referred to.  The very best thing would be to give her direct payments.  What she needs help with is to get out and in six months has not been out on her own and it would be nice for her to decide on who she wants –  it is very bad that nothing has been done for Elizabeth in all this time.  Had she been given just a little bit of direct payments I could have arranged for someone of Elizabeth’s choice to come round to the house and take her out to the gym or other activities.  Elizabeth is fine now she is not in a MH institution in terms of behaviour however she suffers panic attacks and is petrified before going out places.  She also feels dizzy which is probably due to the fact she is on far too much drugs – the dosage is too high and should be reduced.  I am paying for the personal trainer and she could benefit from more sessions and another thing about the drug Clozapine it causes tremendous weight gain and that means looking at diet –  my carers are very good but cannot take her out all the time and the more she gets out the better as I am keen for Elizabeth to move on in her life.

I have some friends right now going through a very tough time.  They have sons/daughters on lengthy sections.  It is important to know that not everyone on a section such as this or even in a secure unit has killed or harmed anyone.  I think the system in this country is appalling and injustice is when someone ends up imprisoned who was never a risk to society and further injustice of labelling someone for life and taking control of them to the extent of depriving their contact with family for instance.  THE PUBLIC SHOULD BE AWARE THAT THERE IS SUCH TERRIBLE  ABUSE GOING ON AND BREACH IN HUMAN RIGHTS LAW CONSTANTLY – IT IS DEVASTING TO THE FAMILY OF THAT PERSON AND THE PEOPLE WHO SHOULD BE DOING SOMETHING ABOUT IT IS THE GOVERNMENT AS THEY ARE WASTING HUGE SUMS OF TAXPAYER’S MONEY – how can anyone get better when incarcerated on shocking wards for so very long and some of these wards are horrific. There should be a complete  review and accountability to the public –  many of these patients that are made out to be a danger to society in fact are not.  They are being used as human guinea pigs with drugs given at high levels.  Others are left to struggle in the community with little or no support.   Physical health is being ignored in favour of drugging that can lead to permanent disability and serious physical illness.  As regards justice this is also denied to many vulnerable patients and some become too weakened to ask for things and deal with situations and end up permanently institutionalised – some are sent to private sector establishments like Elizabeth – this must cost a fortune and they are kept for as long as three years or even more in some cases.

I have been asked to speak at an event soon and I am delighted to say that Elizabeth’s sister will speak alongside me and Elizabeth herself is welcome to come and join us if she feels up to it and I am pleased to say that since coming home she is finding it easier to talk to people and has confided in some of my close friends.   I am not always around as I work and Elizabeth is more than capable of saying “no” to me whereas with the team she under strict control in an environment where coercion was rife and human rights forgotten. She is no longer clinging to my arm quite as much as before when out walking but I am concerned about the arm movements and when you tell her about this she is oblivious.

Christmas will be happy this year and there will not be the problem of driving there and back to hospital or care home picking up and returning Elizabeth – the hospital was a 5 hour journey away and even the care home was hundreds of miles away – I am looking forward to Christmas this year for the first time in a long while.