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.

SHAME ON YOU –  YOU MENTION ABOUT GIVING BRIBES AS REGARDS LEAVE WELL PERHAPS YOU CAN ANSWER WHY DID ELIZABETH NOT HAVE ANY LEAVE?

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” .

IT IS IMPORTANT THAT YOU TREAT ADVERSE PROBLEMS AGGRESSIVELY.

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.

 

 

  

 

 

I attended this event the 50th Maudsley Debate in London, “CBT for Psychosis”. I like to go to these debates and I was pleased with the outcome.

I asked Elizabeth about CBT and she said it helped her and if something helps her then I am in favour. It is the mind altering drugs that have been oversold in my opinion and at the end of this blog I list the drugs that Elizabeth has been on and none have worked.

The 50th Maudsley Debate CBT For Psychosis
I was delighted to have a front seat. My thoughts were that I was on time and had paid for a cab to get me to these debates so why should I have to go to another room especially as I as a mother am very much affected in terms of the care on offer. I did not get up this time and speak but told the panel later that my daughter said it was helpful to her. Whilst experts may argue that the drug Clozapine is good but I would strongly disagree – how can this be when Elizabeth shocked me by some of her comments when she came to stay at Xmas. If this drug is meant to destroy her memory as to painful events like ECT destroys not only painful memories but extremely happy memories then none of these kind of barbaric treatments are working from what Elizabeth said. Having said this there are some people who do not mind having these treatments and do not mind being labelled but then there are others like Elizabeth who has had one label after another and a cocktail of poisonous chemicals one after the other and several at the same time which is destroying her physical health and adding to her decline mentally. It is not CBT that is being oversold in my opinion it is the poisonous chemicals that I cannot even refer to as medication as they have failed my daughter but then that is not surprising as she could have a physical condition which has been misdiagnosed by psychiatrists. That would explain why the drugs are not working.

Well once the debate had ended, I had a lot more to talk about than just CBT. I know of many people like myself with sons/daughters who wish with all their heart that something could be done for their sons and daughters on lengthy sections and I have been able to challenge such a section recently with research that I had read about and Elizabeth is no longer on a section and she should never have been on one in the first place as nothing was done properly and the Bethlem caused the psychosis by doing a reduction too steeply and how on earth can such a reduction be done in 2 weeks. Whilst such debates/conferences are good and are taking place more frequently the one thing that is needed most of all is NOT being provided and that is a facility like Chy Sawel. The acute wards have failed my daughter and others I know of and it is no wonder why – the main care was drugs and patients do not get listened to, so there needs to be better facilities and alternatives and a completely different approach as patients should be treated individually and there must be consideration as to what happened to that patient in the first place and that should be addressed before giving the drugs. Where possible families should be included and not excluded like so many are. There needs to be urgent action as young peoples’ lives are being destroyed and why should someone have to put up with a lifetime of drugging especially when a diagnosis is in doubt and they are treatment resistant.

I discussed afterwards about the CEP. I am pleased and full of hope about the CEP (Council for Evidence Based Psychiatry) as I see this as real hope that something even more will come out of this as everything is most unsatisfactory and so many people are totally unaware of what is really going on – situations where lives are being put at risk by the continuance of treatment that is ineffective and harmful when in fact there could be underlying physical health problems that are preventing a patient from getting any better and this is why I would like to see Chy Sawel set up. I do not believe anyone should be written off as being beyond hope at all.

I was pleased with the voting that took place at the Maudsley Debate and afterwards I spoke to everyone on the panel and told them that CBT was helpful to my daughter and better than the drug treatment which has not worked.

I complained to Professor Murray about the Bethlem where he referred her and promised her in writing a drug free period of assessment. I told him that there was no way such a drug free period could possibly take place effectively in just 2 weeks. I complained to him about the Metformine and he said that this would not have been given without good reason but now the GP has taken her off it as he could see no reason why she should be on it. When Prof Murray told me it was for weight loss I was able to show him what knowledge I gained on this drug and as regards the other – Clozapine I do not have a good word to say for it and I told Dr James MacCabe exactly what I thought about this drug and what I had seen of his presentation/research which I was not happy with. I was able to tell him what harm this drug was doing and in fact if he was meant to promote this drug if anything judging by the response of other mothers they were likewise disgusted. I told him that he should be concentrating on research that was more useful such as looking at the physical health of patients like my daughter who could have an Endocrinal Disorder and nothing wrong with her mentally at all. This drug was given against my daughter’s wishes, her Advanced Declaration ignored by the team at the Bethlem and I was told “its all about Clozapine here” – I was far from happy as Professor Murray had promised a drug free period of assessment and nothing was done properly and look what they did and where was his one or two contacts? and as for Dr MacCabe I told him that the patients were not being shown everything they should be shown as I saw what was handed to my daughter which barely went into any depth as to the harm of these drugs. Just one look at his presentation would be enough to put the world off taking this. In fact perhaps this is a positive thing as this is being informative to mothers like myself. – I felt my daughter was abandoned at the Bethlem and as for the Clozapine which is supposedly the drug of last resort in psychosis – I have heard that withdrawal from it is likely to lead to relapse but then again nothing is done properly in the UK as regards withdrawal and I know there are people that know how to do things properly and what is dangerous is that a withdrawal is not properly monitored and that is why there should be a facility when things go wrong in terms of treatment like they have for my daughter. It is disgusting is that a relapse from these drugs or any withdrawal symptoms could well lead to the mental health team intervening and acute admission to hospital. That enforces the argument for different alternative care to be provided of a humane nature where there is minimal drugging ie., Chy Sawel which would be modelled on Earth House in the US and I also like to look of Cooper RIIs. In the absence of Clozapine – PRN medication will be Lorazepam and Haloperidol and Haloperidol has far worse side effects and adverse reaction so I have been told. So my daughter would need very close medical supervision for any proposed downward titration of her present dose which was raised by the consultant psychiatrist at Cambian who abruptly when I found out everything that was being said and going on behind my back. As Elizabeth would need very close medical supervision for any proposed downward titration of her present dose then as far as I am concerned this should be provided with proper monitoring as none of this is being done properly either in the UK and that is highly dangerous. If a team of experts have the knowledge to push these harmful drugs then they have the knowledge or should do to properly take someone off them when they do not work and certainly there are such experts in the UK and they may not be just psychiatrists but the Professors themselves who know the correct dosage of Clozapine ie., 100mg and I am going to make sure my daughter is put on the correct therapeutic dose of this awful drug at the very least.

I hope that the CEP who intend to identify gaps in existing research, with a view to supporting new research into under-reported areas of psychiatric harm, as well as alternatives to the medical model will get involved in a specialist treatment centre (such as Chy Sawel) to help people like my daughter who will suffer from physical health problems if nothing is done and who are “treatment resistant” to the drugs. The mission of the CEP is to REDUCE PSYCHIATRIC HARM BY COMMUNICATING THE LATEST EVIDENCE TO POLICY MAKERS AND PRACTITIONERS BY SHARING THE TESTIMONY OF THOSE WHO HAVE BEEN HARMED LIKE ELIZABETH AND BY SUPPORTING RESEARCH INTO AREAS WHERE EVIDENCE IS LACKING. Well the way they can reduce psychiatric harm is by looking at how best they can help someone like my daughter and what facility is needed and as I and other mothers have identified this facility is Chy Sawel.

As for the label of Paranoid Schizophrenia Treatment Resistant which my daughter does not have any more and the team are still sticking by – I am not having that report by the Independent doctor dismissed by ANYONE – THE NEW DIAGNOSIS IS PTSD and the treatment should be INTENSIVE TRAUMA THERAPY. I would also like to add holistic care and open dialogue and the involvement of Dr Walsh and I must speak to the new consultant psychiatrist about this. Schizophrenia is a value judgement NOT A DIAGNOSIS. To date no marker has been identified and after 30 years of genetics no one is any closer to finding it. I have always doubted this diagnosis as my younger daughter is on top of the world and the drugs themselves can cause hallucinations – in any case even if someone does hear voices there are people out there like Eleanor Longden and Rufus May who could help so many with their approach and this is better than all the drugs in the world. MANY SUFFERING FROM PSYCHIATRIC SyMPTOMS ARE VICTIMS OF INJURY NOT OF DISEASE AND WHAT IS MORE THIS IS NOT A THEORY. THE EFFECT OF DRUGS ON THOSE WITHOUT THE NECESSARY P450 cytochromes or those whose ability to metabolise the drugs has been adversely affected by concomitant drug interventions – this is not a theory – this is a scientific fact.

I like the fact that the CEP communicates evidence of the damaging effects of psychiatric drugs and treatments in the UK to people and institutions that can make a difference. Evidence shows that psychiatric drugs portrayed as useful and efficacious by many areas of the medical profession can cause considerable harm to many patients particularly when taken long term. Well I do not want Elizabeth on these drugs long term and I would like to see everyone get together – all the experts in withdrawal and Professors who really know how the drugs work and do something to help my daughter and others. “Mum, I do not think the drugs are doing me any good”. You can see the decline and I have proof by private test results. I spoke at the debates to the panel of the effects on my daughter and how she is in bed by around 6pm, needs to be supported whilst walking, has lost so much confidence she cannot go out on her own. She is living a half life. The care home is nice however it is still a distance away and the treatment is not going to change and it is wrong what is going on in the UK – I am prepared to pay for every test to be done.

Here is the shocking care of my daughter:

CIPRALEX,RISPIRIDAL,ABILIFY,LORAZEPAM,PROMAZINE,DIAZEPAM,OLANZAPINE,HALOPERIDOL,ZOPICLONE,SEROQUEL 750MG- 800mg,CHLORAZEPAM – other skin medication which the GP forgot all about until I challenged this.

METFORMINE 500MG ) – these are contra indicated drugs prescribed by the Royal Bethlem Hospital for no reason and supposedly given off label for weight loss.
CLOZAPINE 350MG ) The GP has take her off this chemical quite rightly so as I requested to know if my daughter had diabetes and I am not sure that the files were forthcoming from the Bethlem but I intend to find out why my daughter was given a drug off label that is contra indicated. I have looked into all of this and discovered that ONLY AN ENDOCRINOLOGIST CAN SUPERVISE THE USE OF METFORMIN OFF LICENSE and only one indication for Metformin is licensed. The Endocrinologist should know if increased prolactin has induced any disturbances such as gynacomastia, galactorhoea etc. Now that I have looked into all of this I am extremely interested as to what has been going on and if the GP in Wales could see no reason why my daughter was on this chemical then I as a mother wish to know why she was put on it in the first place. Metformin is NOT indicated or licensed as a preventative drug for diabetes in Clozapine use.

What is the most important thing of all is that everyone in the team as well as the family should know WHY Elizabeth was put on this in the first place. It could mean that someone in the team at the Bethlem had identified a dysfunction and this is where communication is extremely important between the GP and hospital and I must check that the files arrived in the end for the GP as I know the GP had requested these files and they had not arrived when I last asked. I need to see the new GP where Elizabeth is now so I can check all of this information.

It could be dangerous to Elizabeth if things have not been done properly and it is a good job that I look into all of this and I am not the only mother who is checking what is going on.

Anyway, I have already discussed all of this with the current team and hope to have appointments to see the new GP, the consultant psychiatrist, an Endocrinologist and arrange all the private tests very shortly as I have time off to sort this out.
Here are just some of the symptoms that the team have ignored that Elizabeth has complained of.
HEADACHES
INDIGESTION
DIZZINESS
PALPITATIONS
HEART STRAIN
CONFUSION
SUICIDAL THOUGHTS
AKATHISIA
SKIN PROBLEMS
HALLUCINATIONS
DISORIENTATION
PANIC ATTACKS
WEIGHT GAIN
TIREDNESS
AGORAPHOBIA

I suggested to Dr MacCabe that there needs to be a debate about physical health and was able to discuss some of the research I had read about which puts diagnoses into question and if patients are not getting better and acute wards overflowing then it is urgent that everything is looked at in terms of physical health and I want more than a debate but something done as I do not want Elizabeth on this awful drug for the rest of her life and what is more I do not want her taken off in a shocking manner like someone is taken off immediately if for instance there is a blood disorder. Things should be done slowly and gradually and properly monitored.

For the first time I was allowed to visit Elizabeth and go to her room which was very nice but I am concerned that not everything has been sent ie the supplements and the oils from Dr Tracy and I have today written to Cambian about this. I had this trouble before and had to deal with the Bethlem about this but they do not appear to have been sent and I am waiting to hear about this.

It was good to see so many members of Speak Out Against Psychiatry there at the debate and these are the people – the patients themselves that the team should be learning from in terms of how to improve the care and everyone is keen to see open dialogue.