Message from Elizabeth

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.

 

 

 

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