This weekend I am hoping to go to the Healthy Eating Show at Olympia.  I have been to other exhibitions held there in the past which were very good.Last Saturday I was taken to London to see the show Beautiful –   a musical -tribute to Carole King –  I thought the show was very good and my Mum wants to book again – the seats were very high up but I coped well because normally I am very afraid of heights but I had not taken the drug Clozapine beforehand so maybe this made a  difference. I have to lie down when I take this first of all and I cannot eat anything after taking this drug – it makes me feel dizzy but if I lie down for a while I feel better after some time.    We also went for a meal to the Opera Tavern in Covent Garden where they do Tapas.  I liked it very much – the food was good.

I have a nutritionist/trainer that comes every Monday who puts a lot of emphasis on eating the right foods.  I am trying to keep a record of that at the moment – sometimes I crave for chocolate but I know I must watch this now more than ever.  The drug I am on causes tremendous weight gain and I never had to watch diet before like I do now as I never seemed to put on weight before.  The last consultant psychiatrist did not alter the dosage like I had hoped and I requested this but no one took any notice.  I am supposed to have a new consultant psychiatrist but have not met him yet.

Today I have had a very nice day.  I went to  Bannatyne Spa Luton with my sister as she got me tickets for Christmas.   I had various treatments, sauna, steam and I went swimming.  It was a wonderful calm experience and I felt like I was in heaven.

Since coming home although I have not been out anywhere on my own yet, I have been getting out much more than before and I do not feel the severe panic attacks I used to.    I used to feel physically ill and make all sorts of excuses to avoid going out anywhere.  I am also doing more for myself but sometimes I do need a reminder.  The drug I am on does make me feel very tired and I get out of breath sometimes when I am out walking and have to stop.

This weekend I am hoping to go to the Healthy Eating Show at Olympia.  I have been to other exhibitions held there in the past which were very good.I will write about the exhibition soon.

I am hoping to go somewhere nice on holiday this year as I have not been anywhere in three years and away from my family.  Right now I feel happy. I would definitely like to this spa again.

 

 

Elizabeth is 28 today and it made my day to see a message left for her by a friend she has known since nursery school.  I telephoned to pass this on to her.  Tonight she is out with her sister and friend at an activity centre called “Top Golf”.  I understand they are taking her out for a meal too.  I have appointed someone to look at her diet regularly as unfortunately the NHS only provide 1 visit with a nutritionist and I am worried she has diabetes as I have read in the files some disturbing things and have had private tests done myself.

It is peaceful in the house so now I have a chance to read my new book called Emotional Health by Dr Bob Johnson.

 

I thoroughly agree with Dr Johnson  emotions are the single most vital ingredient in all human affairs.    I can relate to this book as I have observed  how Elizabeth refuses to emphasis on certain issues that she suddenly and out of the blue will mention. She will end her conversation by saying “not going into it”   I feel when the time is right she say more but I will not pressurise her on this.  Since coming home she is becoming more open as it is not an oppressive environment like the institutions she has been sent to.  Training of professionals from what I can see appears to discount emotions and this shows where things are wrong.  Emotional health means us controlling them rather than the other way around – I would agree with this.  The trouble is not just Elizabeth but other former patients who I am in touch with complain that their feelings are ignored.  This is quite upsetting to patients when they are treated like they are invisible.  Training is supervised by institutions where discussion of emotion is taboo.  “Why wont they listen, Mum”.   I have come across this myself and total lack of understanding on their part.   On my blog I feature something written by a former patient who describes psychiatrists like robots and I would agree.    This book gives a great understanding on the subject of emotions.   A decent psychiatrist should place themselves in the position of the person and understand the importance of truth and gaining trust and consent.  If you do not trust someone that person is not going to share their emotions and Elizabeth is often referred to as being “guarded.   Coercion is something often used in psychiatry but when dealing with matters of the mind there is the question of whether consent has been sought and obtained and I doubt this in Elizabeth’s case.    I see Trust having been betrayed as Elizabeth signed an Advanced Declaration stating she did not wish to take Clozapine whilst at the Bethlem.   Truth was not evident as Elizabeth was so drugged up she did not even know she was on Clozapine and so the team had therefore coerced her into having this chemical whilst weakened on a maximum dosage of Olanzapine plus other drugs on top.   I reckon this was when they introduced a drug with the letter ‘M’ . (Metformine) This is when I got to find out the truth – another patient urged Elizabeth to find out saying it was important she knew what they were giving her  and this is when Elizabeth gave consent for me to know as well and shortly after this I was banned from visiting completely.  Trust has therefore been betrayed and in its place deceit and coercion.  This is how I view mainstream psychiatry.     Truth Trust and Consent are vital to gaining Emotional health – without them, the mind becomes a battleground of flailing emotions. “If there is insufficient truth, trust and consent available the victim of the irrational emotion will strenuously decline to examine the cause of the irrationality which thereafter takes on a life of its own”

Frozen terror is applicable in Elizabeth’s case.  “Frozen terror underlies all serious emotional disorders.”  Something traumatic happens to that person that can go back years but memories remain buried that person.  “To remedy fear rational or irrational is to find where it is coming from and remove the danger it portends.

Dr Johnson in this wonderful book explores emotions rational/irrational, examples of how he has  dealt with certain situations and gained the respect of those considered by the professionals as being “untreatable”.   Well Elizabeth is “treatment resistant”  however I know for a fact she responded well to Dr Johnson.

Dr Johnson talks about ECT which apparently Elizabeth has been offered.  To think that I as a mother once thought this was better than drugs –  how wrong I was but I have since become knowledgeable  –  I was horrified to hear Elizabeth was offered this barbaric treatment and if you object under a section, your objections are overruled and you can be given this treatment under a section of the Mental Health Act.   Elizabeth thinks she refused this but one day I turned up at the Bethlem and her face was covered in bruises and to this day I am left wondering what happened to her.  The lead nurse said “I am happy with this” – the ward manager claimed not to have noticed anything.   There have been cases of lasting mental impairment resulting from ECT such as inability to read or tell the time and I spoke to someone once who told me that a huge chunk of memory had gone and she found this extremely distressing.  ECT induces convulsions, amnesia or memory loss.

Yes I agree with Dr Johnson that prison is not the answer for many as how is this going to help someone who is themselves  a victim of terrible abuse which in some cases goes back to childhood.

What a shame not everyone appreciates the good work done by Dr Johnson and in testimony to this there are letters – why should something successful be closed like the Special Unit at Parkhurst Prison  perhaps ifother psychiatrists took his approach there would not be wards overflowing and patients would be treated like human beings which is not the case at present.

Whilst Dr Johnson worked in the Special Unit at Parkhurst Prison for exceptionally dangerous and disturbed prisoners too violent for Broadmoor he reduced the level of violence by 92%, the consumption of tranquillisers by 95%. No alarm bells were ringing for 3 years. His work has been widely reported and formed the basis of a documentary investigation by Panorama on BBC1on 3 March 1997.

Dr Johnson was the independent Doctor for the Tribunal who has given the ONLY accurate report and correct diagnosis which the team choose to ignore.  With the vast  experience of Dr Johnson and the very fact that he managed to earn the respect of my daughter who according to the team is chronic treatment resistant I can honestly say I could not have chosen better for an expert witness and this shows what is lacking today in terms of decent care and understanding for those who have mental health conditions.

Perhaps the team would like to borrow this book which could benefit them all and I would like an honest explanation from them as to why Elizabeth was denied the report by Dr Johnson and why they stick with a label none of them have proven to me scientifically.  I would welcome open and honest responses by the team directly on Twitter rather than the things written in the files which is another thing I am reading right now.  I shall be featuring extracts from all my new books soon which could change psychiatry for the better in my opinion but that is  wishful thinking.  Psychiatry  is mainly about drugging and the care is centred around “business”.   Huge amounts of money are being spent not on care as I can see but Elizabeth is now home and her care in a care home would have cost £60000  a year so how many are on long term sections in untherapeutic environments who are not of risk  to self or others  –  I know of quite a few cases. Elizabeth does not need to be on a CTO either which is a further saving of taxpayer’s money.

Elizabeth is still out with her sister and now I am going to finish this wonderful book which I would recommend to you all.

Elizabeth may wish to write the next blog herself and I am going to take her with me to meet with other “survivors” at the weekend as I have not been around to celebrate her Birthday today and  so will do this at the weekend.

 

I am now nearing the end of this wonderful book and under the heading  “Sociably Sane” is written “when the mind goes wrong it does so because it is being driven not by one but by two intents at the same time, pushing in opposite directions.  Dr Johnson talks about infant and adult survival strategies and how right he is to comment that “those who deny we have any possibility of intent in the first place, by this very decision exclude themselves from any understanding of the painful agonies of mental disease”.   He talks of the problems of continuation of infantile survival strategies into adult life causing many problems.  With Elizabeth  I think this is applicable because it is as though she does not wish to be an adult at times and there is certainly evidence of “frozen emotions” –  when someone has suffered trauma in adolescence and further trauma relating to the care in terms of hospitalisation I believe this is her way of coping – Elizabeth could not cope in the local scheme in the community and was unhappy there whereas at home she feels safe.  Since going away for nearly three years and coming home again Elizabeth is a changed person and is calm – I put this down to not being on such a huge dosage of drugs any more.  One can only imagine how terrible it must feel to be forced to take 800mg Quetiapine and on top of that Clonazepam,  Haloperidal and Lorazepam together with skin medications.  She was clearly having adverse reactions to these drugs but in psychiatry this is regarded as symptoms.  Tonight I have been working with Elizabeth to try and get her motivated to do things herself –  she never refuses.  I am teaching her the basics –  to wash up properly, to iron properly, to throw rubbish away and recycle.  Washing, ironing and cleaning and eating healthily.  I cannot just leave Elizabeth to do these chores and expect them to be done properly so I have to stand with her and encourage this.  She takes it well as she knows I am trying to help and she needs motivation.   It is a good thing that Elizabeth is calm about all of this as some people could react – Elizabeth appreciates the support as it is no use me doing everything for her.  I would not only like her to be able to go out without me but to be able to look after herself.   I am seeing improvement compared to when she first came back.   “Emotional health applies as much to societies as to individuals” – that’s true.  Dr Johnson talks about the importance of independence and I am going to do everything possible to see that Elizabeth gets the help she needs.   Help to go out places as she suffers from Agoraphobia now.  Help and encouragement around the house but I am so lucky to have so many good friends helping me.   I have learned a lot and adopted a difference approach thanks to wonderful books like this. To begin with I had little knowledge of anything to do with psychiatry –   since reading all these wonderful books this has provided me with a much clearer understanding than ever before.

Elizabeth continues to make good progress.  She is taken out regularly by close friends.  Others help towards the blood test essential for her being kept on the chemical Clozapine.  We are still waiting to see the consultant psychiatrist. I am really happy today at the start of the weekend.

This weekend we have a show to go to “Beautiful” – Carol King. I have booked a deal where you get a meal as well.  There is no other plans but I will help Elizabeth tidy her room and encourage her to hoover over the weekend.

My thoughts are on holidays right now and I would like to go abroad and take Elizabeth.  It will be so nice to have Elizabeth with us on holiday as in the past she has been in hospital miles away from home and family.

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.

 

 

 

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