Half-Life Existence and miles away from Family

Whilst Elizabeth is settled into the care home following my successful appeal ending a lengthy section pf several years  I do worry what the future is going to be for my daughter.  She once had a job, was once learning to drive, was studying at college and living an independent life. 

Elizabeth now cannot go out alone anywhere, is dependent on the team and whilst the staff are nice – they are only doing their job, the treatment given is destroying my daughter’s physical health and the system that allows this is AGAINST GOD.  Who would want to be forced to take drugs for the rest of their lives and why are there not any alternative care centres where patients are treated humanely and intensive assessments are carried out to look at the drugs and their physical health condition?

As a result of being prescribed Clozapine against her wishes she has encountered severe side effects and I know an emergency doctor has been called out more than once and Elizabeth has complained of a strain to her heart but still they push the drug at her and under the  law of this country a patient is made to take the drugs regardless of whether that person is able to tolerate them – metabolize the drugs or regardless of whether a diagnosis is in question.  This is abuse in my opinion.  There is no choice and I think it is extremely cruel to give someone a life sentence when there is the knowledge to get someone off these drugs but it is far easier to prescribe them for the rest of someone’s life.

To this day I do not know who advised Elizabeth to go and see her GP but the GP prescribed Cipralix and that led to hospital admissions and revolving door scenario with care that has failed to help and that is because the care Elizabeth has received has not solved the underlying problem and from the start the underlying problem was of no interest to the psychiatrists and neither was her physical health as I do not believe she was ever referred to an Endocrinologist and when I had the first lot of private tests done no one was interested.  The decline in Elizabeth led to her being referred to a hospital that is regarded as worldwide renowned but I thought they could help Elizabeth and she was promised a drug free period – no sooner had she arrived they tried to persuade her to take Clozapine.

I have just been listening to the interesting recording of Dr James MacCabe:    https://t.co/p1zFJdNMMT- there is no way as a mother I would have wanted my daughter to go to the National Psychosis Unit if I had known about this.

A Brief Summary:

It is all about encouraging people to take Clozapine and when he says that the average stay is 6 months when I asked a nurse that nurse told me someone was still there after 2 years.

It is all about re-starting people on Clozapine – they may have had previous problems with this drug – what are they doing – they could be risking someone’s life who has had an adverse reaction to this drug.

When he says about family work I nearly choked with laughter –  in no time I was banned but to begin with I had a slot re phone call from the lead nurse and when you asked a question you got no information and then there were the meetings but they were too far for me to get to and now of course I do not get an invitation.   Carer involvement –  well this is a joke as I was excluded to the point I had escorts accompanying me when I took my daughter out and she had no leave to come home.   I cannot argue about the beautiful grounds  – they are beautiful but they are deserted as everyone is drugged up on the wards that are like prison. 


So the people referred here are those who are unwilling to take Clozapine like Elizabeth was.

This could be because they have had cardiac problems or treatment resistant like Elizabeth.  He says that when people stop taking this chemical they deteriorate and get worse however nothing is properly done in the UK as regards drug withdrawals and there it is encouraged for experimentation when one drug fails then another is given without any choice in many cases.  He said this is a lifelong treatment  – to keep taking the drug until they die.   This is very sad in my opinion and cruel.

Clozapine was re-introduced having been previously banned but with more stringent guidelines for blood tests.. 


Main concerns expressed by patients re not wishing to take Clozapine

It is very dangerous and Dr MacCabe agrees!

It will make you fat – he later talks about remedies for this including Metformine – even mentions gastric band that someone had and proved effective.

Hyper-salivation is a major concern to most of the patients and can be life threatening alongside constipation and needs proper monitoring as it is embarrassing for patients to talk about it and someone like Elizabeth would not open up and say a word and that worries me extremely. 

The feeling you are on the ‘scrap heap’ and some patients do not make a good advertisement for Clozapine to other patients by their appearance.  AND NEITHER DO YOU DR MAcCABE WITH YOUR WONDERFUL INFORMATIVE PRESENTATIONS AND RESEARCH IT IS ENOUGH TO MAKE ANYONE RUN A MILE FROM THIS HELL ON EARTH PLACE. 

Other reasons that some people had a needle phobia – well Elizabeth did not want the injections – would you –  well Dr MacCabe how would you like the regular injections?   Experimentations like this should be paid for by people who are willing to take part not someone like my daughter who signed an Advanced Declaration.

He then goes on to say about some cream re pain relief and other things in this respect.  He recommends Benzodiazepam for agitated patients before they are due for a blood test and also Lorazepam.


He mentioned about RESTRAINT AND THAT THIS CAN BE USED UNDER THE MHA UNDER A SECTION 3.   Elizabeth’s face was covered in bruises – could this be as a result of such a restraint?  The lead nurse said she was happy with that and the ward manager had to be told when this occurred which I could tell her exactly.  I never got an answer as to how this bruising occurred but should imagine that a patient could be bruised as a result of this kind of treatment.   Perhaps this is why I was being bullied into agreeing to a Section 3 by their legal teams and social services.  They just wanted her on Clozapine.

Prof Taylor had looked back on people who had discontinued Clozapine and the reasons for this – a third were adverse effects, he gave a percentage of how many deaths, Clozapine is a life long treatment – keep taking it until they die.  Most troubling side effects experienced by patients: hypersalivation, cardiac problems, pneumonia increased risk, incontinence, constipation (life threatening) choking on saliva (can be life threatening), cardiac problems,  incontinence    “START LOW GO SLOW” .


He goes into detail as regards how to deal with cardiac problems

Constipation can lead to death. 

In addition he talks about other serious conditions caused by the drug.

He talks about maximum dosage of Olanzapine which is almost as effective as Clozapine but risky and advises caution

He speaks about NICE guidelines being negative regarding ECT but then goes on to compare this with the Cochrane Review which comes to a different conclusion and seems to be in favour and the recommendation is 20 times before you say it has not worked.  THIS IS AN AREA THAT NEEDS MORE RESEARCH SAYS DR MACCABE AND A PRESENTATION TO NICE GUIDELINES IN THE HOPE THAT ECT WILL BE RECOMMENDED.   

Elizabeth would not wish to lose her happy memories and this is what ECT can do and I know of many people who are NOT happy and have never got over being forced to have ECT and so NICE are correct.  I HOPE THEY HAVE ME ON THEIR PANEL AS I HAVE APPLIED! 

At the end there was massive applause for Dr MacCabe’s informative presentation   

“REFER THEM TO THE NAT PSYCHOSIS UNIT”  SAYS DR MACCABE.    A better description would be as my daughter says Prison or my description – hell on earth in beautiful deserted grounds. 

Well what better advertisement than this and I just skimmed through this shocking presentation.  

 https://t.co/p1zFJdNMMT  –  this is just a summary above but the facts are here.

I hope that doctors like Dr MacCabe will start to look at better kinds of research – not the kind that could cause someone like my daughter to lose their lives and as the title of this blog describes “A Half Life Existence –  How can this cruelty exist in a so called civilised country?

If every faith, every religion got together to help there would not be such cruelty BUT NOONE SEEMS TO CARE. The only people who care are those who have seen such abuse or have been affected in some way directly or indirectly.  It is not being reported in the press however what is going on affects the wider public as people like my daughter will become a burden to the NHS if something is not done and it is wrong to close down the much needed A@Es and maternity wards –  when MH care is not working then there needs to be proper assessments and a choice in care as not everyone can metabolize the drugs and persisting with the drugs for someone treatment resistant could be dangerous. 

Dr MacCabe is not the only doctor or Professor carrying out the WRONG kind of research to the applause of an admiring audience such as you would get at the Institute of Psychiatry and I put this down to the teaching and I have a good mind to apply for some of the courses myself so that I can contribute from a personal first hand experience.






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