Featuring Dr Fiona Gaughran, Lead Consultant Nat Psychosis Unit. 

What’s New and What’s Not…..

Interests:  Honoraria/Advisor :  BMS, Roche, Family Professional links;  GSK, Lilly

Previously funds for Conferences/unrestricted research grants/advisory bodies:  Astra-Zeneca, Janssen, BMNS, Lilly

In the presentation it is mentioned about the strong links between the Institute of Psychiatry and South London and Maudsley Trust.

It states why people are referred ie:  Diagnostic Dilemmas:  High use of resources, advice on management, treatment resistance, sub-optimal response.

Team – consisting of Psychiatry which notably is at the top!  Psychology, Medical KCH, Social Work, OT, Expert Nursing, Specialist Pharmacy

 

Assessment

Diagnosis

Dimensions

Co-morbidities (Physical health    Mental Health)

What’s been tried and why didn’t it work?  It goes to look at past treatments (past treatments were mainly one drug after another, sometimes more than 1 at the same time)

CBT is mentioned under Psychological Therapies  – CRT, Art therapies, Family Work.  ( family work?  Even if someone is opposed to the treatment you do not treat someone like a criminal to be escorted everywhere and threaten them with arrest).

There is the usual charts and this features Clozapine of course –  CLOZAPINE IS THE WONDER DRUG OF THE NAT PSYCHOSIS UNIT.  I have already featured Dr MacCabe  in his shocking presentation where he speaks of bribery.  I look forward to attending his future courses myself.

The rest of the presentation then seems to be all about Clozapine “its all about Clozapine here – you should have done your research” – said the Lead Nurse.  

Clozapine Optimisation

Not tried – Clinician worries – Declined.     Well that is interesting as Elizabeth declined and was forced – as Dr MacCabe points out under a Section 3 patients can be restrained and forced to take medication – Human rights are disregarded in the desperation to get the patient on Clozapine.  Elizabeth did not even know what drug she was on and that it began with a letter M.  M = Metformine and this is used in conjunction with Clozapine for weight loss but is also contra indicated – now Elizabeth is no longer on this chemical and if this hospital was in any way concerned about a patient’s physical health then why put someone on  contra indicated drugs which I have now challenged and she has been taken off.    

Didn’t Work – Levels / Smoker

The only thing this drug does is to highly sedate someone, Elizabeth has mentioned a strain to her heart.  Emergency doctors called out more than once and NOONE NOTIFIES YOU.  I got to find out as I went shopping for her and rang her.  Elizabeth has mentioned dizziness. “I don’t think the drugs are doing me any good mum”  –  Well that says it all.    There is nothing good in my opinion about this drug and what is horrific is that all along my daughter has not been given a proper assessment.

Worked but Not Tolerated – Levels?

Some people are on as much as 800mg alongside Lithiuim in an equally huge amount –  imagine a young person hardly able to move.  This is an example of what treatment can do for you under the Nat Psychosis Unit.

 

OPTIMIZING CLOZAPINE ESSENTIAL INCLUDING PSYCHOSOCIAL ASPECT

Average Dose in UK around 450mg a day

Response seen in range of 150-900mg  a day

Lower doses required in elderly, females and non smokers and in those prescribed enzyme inhibitors.

 

Plasma Levels –  In male smokers who cannot achieve therapeutic plasma levels, metabolic inhibitors (Fluvoxamine for example can be co-prescribed but extreme caution is required.  It goes into depth about threshold for response.  Importance of norclozapine levels not established but clozapine norclozapine ratio may aid assessment of recent compliance.

 

There is also a chart about weight gain,  Fits – levels, Hypersalivation, Techycardia, Fever, Hyphertension etc

 

Amber

Recheck

WCC lower in am

 

Red

Stop Clozapine

Admit

It features RESTARTING CLOZAPINE AFTER NEUTOPRENIA AND THE IMPORTANCE OF THE RECOGNITION OF BENIGN ETHNIC NEUTROPLENIA IN BLACK PATIENTS DURING TREATMENT WITH CLOZAPINE:  cASE REPORTS AND DATABASE STUDY

OTHER PROBLEMS – POST CARDIAC SIDE EFFECTS

POST PERICARDITIS

POST HEPATITIS

RECHALLENGE AFTER NETROPAENIA

Was it all down to Clozapine?

Do you challenge the CNRD

Benign Ethnic Neutropaenia/other meds at fault?

Does Lithium Help?

When is GCSF useful and how is it best used?

AUGMENTING CLOZAPINE WITH ANOTHER ANTI PSYCHOTIC

Marginal therapeutic benefit but effect size small – Taylor & Smith 2009

Modest therapeutic benefit but effect size small – Taylor et al 2012

Increases Mortality risk

High does guidelines

Interactions can result in higher blood levels and longer QTc as so forth    ……Consider mood stabilisers or anti-depressants especially if evidence of mood disturbance

 

Alternatives to Clozapine are High Dose Olanzapine – weight gain worse on Olanzapine

Combinations of anti-psychotics –  NICE “do not initiate regular combined anti-psychotics  

More work needed

FGA plus Mirtazepine

ECT plus anti-psychotics?

Melperone  …….

WHY DO RCTs promise so much and deliver so little?

Inclusion of treatment -intolerant patients

Compared to unoptimised Clozapine

Impossibility of blind trials with Clozapine

Placebo effect

INTEREST OF SPONSOR

summary:

Full MDT assessment

Optimise Clozapine wherever possible

Manage adverse effects proactively

Augment in partial responders

Collaboration with medical specialities if re-challenge

Limited data for alternatives; consider high does of Olanzapine, anti-psychotic combinations, ECT?

all combined with psychological therapies (CBT CRT FAMILY WORK AND OT). 

 

Comments made herein are just extract/summary of some of the treats in store for patients referred to the National Psychosis Unit.  This is a place where patients are sent away from their families from miles away, where there are few visitors, where experimentation goes on against a patient’s wishes and where they try to make it look good in terms of inviting the family to meetings, a phone call at a designated slot but I have documented what really goes on.    There is forced treatment of patients, imprisonment, exclusion of family and isolation from family as that family may be far away and as I have documented when Elizabeth was sent all the way to Wales,  this does not make it easy on the family financially when you have no support or help and not everyone has a car to drive to visit.  The visitors book was empty when I regularly went to visit Elizabeth.  The beautiful grounds outside were deserted, the swimming pool was used by the local community when I visited.    It was saddening to see young patients so drugged up.   At first I used to visit and take Elizabeth off the ward all day long to visit the lovely area outside of this hospital but then when I was restricted to 1 hour’s visiting rights what could you do in that time.  I was even threatened that police would be called if I was late back.  There were some good members of staff such as the social worker and young nurses but others who were typical and worse name badges back to front and the only time I ever saw life there was at the fete but sadly Elizabeth was too ill to come down and enjoy this and was stuck on the ward all day. 

 

 

 

 

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.

One good thing is Elizabeth is much closer to home than before and the journey is easier whereas before it was costing a fortune to have to stay overnight in Wales. I have to say the area does compare to the beauty of Wales however everything is nearby, shops and amenities and bearing in mind Elizabeth will hopefully be prepared to live independently in the community with more support than before perhaps this is not a bad thing. I obviously cannot say where the area is but certainly there are shops nearby within walking distance whereas before there was virtually nothing and Elizabeth was not allowed to even go down to the corner shop. Despite the fact Elizabeth can go where she likes and has “freedom” such as it is – by this I mean she is not on a section, Elizabeth has lost so much confidence and suffers panic attacks and so it will take a while to adjust after being kept so long under Section. It certainly does not do patients any favours being held on a section that drags on and on and on lasting years on end. The longer someone is held in a hospital environment the more difficult for them to be rehabilitated.

Anyway my first impression was that the home itself was not in a fabulous location somewhere where it was quite busy with traffic but once inside it was a peaceful environment – residents are encouraged to do cooking and do their own washing etc. They have animals – a cat and dogs are brought to see the patients by the Psychologist and I think this is a good idea as I noticed that when I got a cat Elizabeth it was very therapeutic and the cat in my opinion was better than all the drugs put together that the team have given Elizabeth. Even at times when Elizabeth was clearly not well during the weekends when I used to have her over on seeing the cat she appeared to improve and it was uplifting for her during difficult times when she suffered so much with the effects of the shocking mind altering drug Quetiapine which by the way Elizabeth was on around 800mg – the maximum and should never ever have been left on this chemical for the length of time she was on leading to adverse reactions to this drug which I reported to the FDA and Astra Zeneca. The type of side effects I read about in the book Prozac Panacea Pandora by Dr Ann Blake Tracy and there was no point in the team trying to say to me that this behaviour was as a result of her so called illness when I had educated myself as to the effects of these chemicals by reading several books by experts who knew what they were talking about.

So I liked what I saw of the care home and the staff were nice. I was even allowed to go to Elizabeth’s room with her sister whereas before there were strict conditions worse than any prison. Elizabeth has a nice room with a good TV on the wall and there are nice facilities there and it is nicely decorated and spotlessly clean. Elizabeth tells me that the other residents are nice too although many are older than her. However despite the nice facilities of this care home I as a mother would not like Elizabeth to be in a care home for the rest of her life and neither would I like it if the team ignored the new diagnosis which I was keen to speak about before leaving. The new diagnosis is PTSD and I have already looked up NICE guidelines and the current treatment does not appear to be correct and not only that I have put my name forward to be on the panel of NICE – with the top level advice that I have received and read about in terms of research that cannot be overlooked by any professional I feel that I could have something to contribute to the NICE panel.

Elizabeth was very pleased to see us and we went to a nice pub where they did good food and after that for a drive and a ride on a local steam train in a peaceful setting. There are lots of nice places to visit in the surrounding area but there is only so much you can do in a day.

Anyway, I obviously did not meet the Consultant Psychiatrist or the Manager. I am hoping to get a call tomorrow from the Consultant Psychiatrist and I have printed off for him some of the interesting research that I have read about. This research should be having the effect of turning around the whole system and I want to share all of this with everyone as it is very important that Elizabeth has the correct care in place. It is not the care home – the area – the people – the staff that I have complaints against. I have complaints against the whole system that does not look into things properly and thinks they can plod on with the same treatment for years and years and years on end and ignore research and advice from leading professionals and some of these professionals do not even know the workings of the drugs such as in the previous hospital where I was told that if I missed a tablet of Metformine it had disastrous consequences and the same with the Clozapine – well I have sought expert advice here and it is very very worrying that professionals have got it all wrong and that I as a mother have had to point out to them what is wrong – the Metformine should not have even been given in the first place and only an Endocrinologist can authorise its use off label so what on earth is going on here. I still have not had my questions answered as if no files were forthcoming from the Bethlem for instance I will find out through the GP as I have ongoing consent and this is very important as my daughter should be referred to an Endocrinologist.

So we all had a nice day today visiting Elizabeth and I am pleased she has a nice room but this is not the place that I want Elizabeth to spend the rest of her life in and the treatment is not the treatment that Elizabeth should be given for the rest of her life as the Clozapine is TOO HIGH A DOSAGE. 100mg is in fact the therapeutic dose so the next thing is it is very important that there are facilities for someone like Elizabeth and I do not mean a horrific acute ward by the way – decent facilities and proper help available if a treatment is wrong then it will need to be corrected and the facilities will need to be provided.

I have seen the effects of the drugs on people long term where they are shaking, where they are suffering from Tardive Dyskinesia and the fact is that I do not want to wait until my daughter suffers from this condition and I want something done about the situation soon. I also want attention to the fact that the drug my daughter is on is one strongly associated with Diabetes and I want everyone to know that when someone develops a serious blood disorder they are IMMEDIATELY taken off the drugs so where is the facility for this and why wait if someone is complaining of shocking symptoms re their physical health. Something should be done SOONER rather than later and I know there is the expertise who know how to take someone off the drugs properly and I would not wish for my daughter to be taking off the drugs in a shocking manner immediately when this should be done slowly and very very gradually and just like Dr Ann Blake Tracy states and I have the CD. Having said all of this I would once again point out that I as a mother would not take my daughter off the drugs myself but it someone suffers shocking ill health and disability as a result of these drugs that the team knowingly continue to give regardless then this is INJURY inflicted on someone and why on earth is the law not protecting the vulnerable patients who are forced to take dangerous drugs for conditions that may not even be correct! Because they have not been properly assessed all along they could have a physical condition and should have been referred to an Endocrinologist. Well I hope this makes everyone question what is going on when physical health is most important and just look what is going on with the A&Es facing closure when people like my daughter are being forced to take dangerous drugs long term and nothing is being done and this will lead to people like my daughter having physical health problems unless something is done and for this you need the correct facility, the expertise with professional involvement who know the drugs inside out – not like some psychiatrists who seem to be only concerned about pushing the next drug – when one does not work they produce another and another and then mix these drugs with others despite the fact they may be contra indicated. There needs to be strict regulations as far as this is concerned in my opinion. There also needs to be proper assessments to determine underlying physical problems that could be mistaken for psychosis and to see if a patient can metabolize the drugs as otherwise the treatment could be harmful.

What is Tardive Dyskinesia?

Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may be present. Is there any treatment?

Treatment is highly individualized. The first step is generally to stop or minimize the use of the neuroleptic drug, but this can be done only under close supervision of the physician.. However, for patients with a severe underlying condition this may not be a feasible option. Replacing the neuroleptic drug with substitute drugs may help some individuals. The only approved drug treatment for tardive dyskenesia is tetrabenazine, which is usually effective but can have side effects that need to be discussed prior to starting therapy. Other drugs such as benzodiazepines, Clozapine, or botulinum toxin injections also may be tried. (well there is no way on earth I would be happy this this treatment!)

What is the prognosis?
Symptoms of tardive dyskinesia may remain long after discontinuation of neuroleptic drugs. In many cases, the symptoms stop spontaneously, but in some cases they may persist indefinitely. all the more reason that something needs to be done urgently now.

Anyway I have given the Consultant Psychiatrist some information and I have some questions for him – when Dr Walsh comes over here this is where I shall need a psychiatrist who will work with Dr Walsh and monitor the treatment. Elizabeth will have a full assessment unlike anything on offer under the NHS and then the correct treatment can be given. I am prepared to pay for every test done. I have already had a lot of these tests done and these prove my point – physical health is declining and this is something that I as a mother cannot ignore and need to discuss this with the GP and then the GP can liaise with the consultant psychiatrist.

The other thing is I need to know where are the oils from Dr Tracy and the supplements prescribed by the private psychiatrist? Don’t tell me these have gone missing again. I believe they turned up eventually from the Bethlem but I will check because I am prepared to go and visit in person with the bill. I forgot to ask the care home if these supplements have arrived or not and that goes for the oils from Dr Tracy. When important things like this go missing I need to know where they are.

Anyway if I can get there I will be going to the Maudsley Debates but the subject is CBT and I have other things to discuss rather than CBT. The next Maudsley Debate should be about the following in my opinion:

“More Cooperation between psychiatrists and endocrinologists and a lot less between psychiatrists and drug companies is what is needed.”

Selye’s Generalised Adaptational Syndrome was examined in detail after the 1st World War in soldiers with very extreme cases of shell shock. 

This condition is particularly severe and can cause serious endocrinal disorder.  Diabetes is such a disorder as are many auto-immune diseases such as asthma, psoriasis etc  diseases often associated with the traditionally diagnosed psychoses. 

Anyone who has been subjected to severe stress over a long period could be suffering from such a condition and this would explain why the drugs do not work.  Liver enzymes such as the P450 group might be compromised by an undiagnosed condition such as Selye’s and if so the patient’s ability to metabolise the drugs might be similarly compromised.

Many soldiers returning from Afghanistan are drug refractive and many are suffering from PTSD which clearly needs examining.

PTSD originally was believed to have been caused by a single shocking event such as being in a disaster or being attacked however it is now widely recognised that sustained stressors can be even more damaging and disorder of extreme stress is the long term version of the one off event causing PTSD.

Many patients may have been misdiagnosed and consequently caught in a revolving door style trap.  The situation they are in is causing the stress and the stress is causing the psychotic behaviour classified as “dangerous”.  IT IS INCREDIBLY IMPORTANT THAT THEY ARE REASSESSED AND THAT THEIR ENDOCRINAL FUNCTION IS CHECKED OUT.

As far as my daughter is concerned I am suspicious as to why she was put on Metformine in the first place and intend to find out – how can someone just be put on 500mg a day  knowingly of contra indicated drugs which has gone on for so very long.  An investigation should be made as to what on earth is going on as harm could be caused to the patients as a result – my daughter is just one case – how many more are there when someone is not being properly assessed or treated and all along they could have a physical problem. 

 

 

Here are a number of papers implication hypothyroidism (endocrinal
disorder) with psychosis

Balldin J, Berggren U, Rybo E, et al. Treatment-resistant mania with
primary hypothyroidism: a case of recovery after levothyroxine. J Clin
Psychiatry. 1987;48:490-491.

Josephson AM, Mackenzie TB. Thyroid-induced mania in hypothyroid
patients. Br J Psychiatry. 1980;137:222-228.

Stancer HC, Persad E. Treatment of intractable rapid-cycling manic-
depressive disorder with levothyroxine. Clinical observations. Arch Gen
Psychiatry.1982;39:311-312.

Asher R. Myxoedematous madness. Br Med J. 1949;2:555-562.

Heinrich TW, Grahm G. Hypothyroidism presenting as psychosis: myxedema
madness revisted. Prim Care Companion J Clin Psychiatry. 2003;5:260-
266.

Lehrmann JA, Jain S. Myxedema psychosis with grade II hypothyroidism.
Gen Hosp Psychiatry. 2002;24:275-277.

Grozinsky-Glasberg S, Fraser A, Nahshoni E, et al. Thyroxine-
triiodothyronine combination therapy versus thyroxine monotherapy for
clinical hypothyroidism: meta-analysis of randomized controlled trials.
J Clin Endocrinol Metab. 2006;91:2592-2599.

See more at: http://www.psychiatrictimes.com/bipolar-disorder/hypothyroidism-important-diagnostic-consideration-psychiatrist/page/0/3#sthash.fmNwj8nI.dpuf

MY NEXT POST WILL BE ENTITLED “VISIT TO THE CARE HOME” AS I WILL BE VISITING ELIZABETH TOMORROW ON MOTHERS DAY.

Elizabeth has settled well into the care home and I believe has made some new friends there.  I spoke to Elizabeth briefly the other day and she says she is happy however if Elizabeth said she was unhappy I would pop down there immediately to collect.  Elizabeth’s happiness comes before what any social worker or team member may think as far as I am concerned.    I did not have a long conversation with her so I do not know what activities she does on a day to day basis however I spoke briefly with a member of staff.  The staff seem nice there but I was  sad to hear that Elizabeth is often in bed by 6.00 pm –  this is not natural and not the kind of life that my daughter should be having at her age.   Going to bed so early in the evenings has  meant she has missed seeing the Consultant Psychiatrist.

I am hoping to visit her this weekend for the first time.   Unlike Wales I should be able to drive there and back in one day so at least that is better.

Mothers Day is next weekend and it will be nice to spend that time with both daughters and whilst I am there I hope that the prescription by the private psychiatrist of the supplements has not gone astray or the oils from Dr Ann Blake Tracy.  I shall be checking on these as last time I wanted to know where those supplements are.  These are for Dr Walsh when he comes over and I do not want these to go astray.

I doubt I shall get to see the Consultant Psychiatrist as this will be at a weekend but I do wish to discuss important aspects as regards the treatment for Elizabeth’s new diagnosis of PTSD that the team seem to wish to ignore and I as a mother am questioning why some of these team members wish to ignore a diagnosis from a psychiatrist of many years experience.   I have read quite a bit on the diagnosis the team state of Schizophrenia and have obtained expert opinion.  I do not accept such a diagnosis and never have done as there has been no scientific proof forthcoming.  How accurate are such labels in that case?  Schizophrenia is a value judgement and after 100 years not one medic/scientific experiment has been able to identify a marker and even after over 30 years of genetics and to this day are still no closer to finding it.    I would conclude there is NOTHING TO FIND.

Psychiatry is based on belief systems (theories) not on science and some of these psychiatrists do not budge on a diagnosis even when confronted with mountains of evidence however I as a mother am not going to have a wonderful report dismissed by anyone and the new diagnosis which my daughter has a right to know is now PTSD.   What is more I intend to make sure that the correct treatment is in place no matter what especially as I believe that for the first time this may be correct and underneath everything could be a physical problem not addressed and that issue I shall take up with the GP.   I would wish my daughter to have proper tests done not available on the NHS that rely on science/knowledge of physiology and biochemistry – I want accurate tests done in order that the correct treatment can be given.   These tests should be available to everyone.  PTSD is a major contributor to what is often mislabelled as diseases and many suffering psychiatric symptoms are in fact victims of injury, not disease.  I am far from happy with the drugging of my “treatment resistant” daughter who has had concomitant drug interventions.   It is a scientific fact that if she does not have the necessary P450 cytochromes her ability to metabolise the drugs  would have been adversely affected by such concomitant drug interventions.

 

This week has not been good for me as I have been ill which is very rare in my case.  I have been so disappointed to miss out on “The Last Asylum” at Queen Mary University.   Then there was a dinner booked to go on with the local carers group.  I hope to go to the INTAR Conference in Liverpool and then the Psychosis course which is on a Saturday.  I have also been told of some good Open Dialogue courses coming up.

Chy Sawel now has a Facebook page and eventually news can be displayed on this page of any forthcoming events.

I shall write next time about my visit to see Elizabeth at the care home. 

 

   

 

 

 

 

  

 

 

 

I have not been to see my daughter Elizabeth since she has moved away from Wales.  However the rest of the family have been to see her.  They had to help Elizabeth sort out so many clothes that no longer fit her.  The drugs cause weight gain and she had according to her sister accumulated so much in the way of clothes that are no good any more. 

I myself have been away this weekend but hope to go and see her at the end of the month.  It is not so easy when the team place someone a fair distance from home and the conditions of Elizabeth’s release is that of course she remains under the care system and is not allowed to come home to live despite the fact she said this is what she wanted. I think the idea is to distance that person from the family making control of that person easier. I have every right to be concerned about Elizabeth’s treatment as for a start 500mg Metformine a day was given unnecessarily by ongoing teams, the initial prescription had come from the Bethlem. Noone stopped to question the fact these are contra indicated drugs so therefore no one cares about Elizabeth’s physical health and the drug Metformine was given for about 3 years prior but then what can you do as a parent when a team play on capacity and state all of sudden that the person you care for does not want you to see the files or have involvement in medical care. This was in stark contrast to when Elizabeth went into the Bethlem and had signed an Advanced Declaraton and said she did not want to be experimented on and also giving consent for the whole family to be involved and see the files. This is how the team play on capacity – the last thing they want is for you as a parent to see what they are doing with the drugs and I have attached a link of a good example on shocking care in the UK. This is the reality of the Bethlem. I admit that the area where I live is not the best for Elizabeth’s recovery and she needs to be in a more quiet and peaceful area but having seen what has happened to my vulnerable daughter in past care I am extremely concerned.  I have been thinking of moving out from London.  I am no longer happy here but I have a job in London and the problem is that there are other people at home who like living in London so it is like a trapped situation but I would have Elizabeth home and contrary to what the team say that I wanted this, at the time something very bad had happened to Elizabeth but no way did I expect such shocking care and truly thought that this worldwide renowned hospital would give my daughter the drug free period of assessment that had been denied to her locally because they do not have the facility on the local ward. This could not have been further from the truth. I even have a letter offering the drug free period of assessment but no sooner had Elizabeth arrived the team set about pushing the drug Clozapine “its all about Clozapine here you should have done your research”. Not once was my daughter referred to an Endocrinologist to see if there was any underlying health problem.

This weekend I have been away to a very nice and peaceful area. The best place for Elizabeth to get better would be somewhere like a coastal area where it is peaceful and can offer a more healthy lifestyle.   I certainly do not have a healthy lifestyle in London and a job is essential in order to keep things running.  

Elizabeth is drugged up on highly sedatory Clozapine thanks to the awful care she received at the National Psychosis Unit.

This is one example of the kind of care on offer there allowed to go on in the UK. 

Today I telephoned Elizabeth but could not get through “press 1 to leave a text message”. I often got this at the previous hospital especially when the consultant psychiatrist decided it was best that Elizabeth did not have much contact or so it would seem. I was not wrong as I have letters to prove it but it was not true that Elizabeth did not wish for contact as I have proof in my mobile phone which would rubbish claims that it was Elizabeth who did not want contact with me especially. I only spoke briefly with Elizabeth as it was time to give out the drugs – I cannot refer to these mind altering chemicals as medication simply because they do not work and Elizabeth has a diagnosis of “treatment resistant”. Anyway I had to phone the office and I had quite a long conversation with a member of support staff. The hospital had not passed on my address to the care home and I had to do this myself plus phone number etc – it is astonishing that I have had to do this because the hospital discharging Elizabeth should surely have passed these details on. Anyway Elizabeth sounded OK on the phone and the staff say she has settled in OK. I went on to tell the support member of staff about the new diagnosis of PTSD and he seemed unaware. IT IS ASTONISHING! THE NEW DIAGNOSIS IS PTSD and I have looked up NICE guidelines and the treatment is incorrect that Elizabeth is currently having. Not only that if it was true her diagnosis is what the whole team assume then she is on the wrong dosage of Clozapine and it is TOO HIGH. I went on to tell this support worker about the Metformine – CONTRA INDICATED DRUGS which I had to personally confront the GP about. I made sure they knew that the consent would follow from Elizabeth to the new GP – I have been told Elizabeth does not have diabetes however I want to know how such a mistake could have occurred with 500mg a day being given of Metformine since the Bethlem. I would urge every mother to check up on what is being done in terms of drugs as it is appalling that for all this length of time Elizabeth was put on this chemical for nothing. I told the support worker that I had lots of evidence suggesting that my daughter could have a problem with endocrinal disorder and that she may not be able to metabolize the drugs and I intend to find out and am prepared to pay for every test necessary. Elizabeth may even need a special diet and I shall look into this as well. All of these tests will be useful for when Dr Walsh comes over again which I cannot wait for. I was told by the support worker it is early days and I know this however if my daughter has a physical illness rather than a mental illness as it looks like I shall want something done about this and I hope that others will look to what I am going to do about this situation. If the treatment is wrong Elizabeth is not going to get better and that is why it is best to get everything checked out.

I will be visiting Elizabeth at the end of the month and I hope before then to speak to the consultant psychiatrist as I have been looking at lots of research lately and need to pass on this information. The care home tried to put my mind at rest by saying they were highly qualified in medicine and knew what they were doing however the support worker could not argue one way or the other that I have a lot of research which should not be ignored in favour of carrying on with the same old treatment that is never going to make Elizabeth better.

I hope they sort the problem with the phone out as it is no joke. It is not that we phone every second but if you cannot get through on the phone it is not good at all.

Over the weekend I plan to type up the minutes of the meeting for Chy Sawel and I have letters and emails from other people who are experiencing the most shocking care in the UK. I have referred them to Chy Sawel and what I hope will be achieved there with unique and humane care.

It is horrifying to read some of the emails etc that I receive and the suffering going on to so many others – all this makes me all the more determined to see Chy Sawel set up.

It is early days to comment but my daughter Elizabeth has just  moved to a care home still miles from home organised by social services.  Elizabeth is settling in at the moment and I plan to go and visit her at the end of the month however what is on my mind constantly is the ever increasing knowledge I am gaining by looking further into matters. 

I have read that if a patient has been wrongly diagnosed with Schizophrenia when in fact the psychotic symptoms are being caused by a neuroendocrine disorder it is possible that this will interfere with the metabolism of atypical antipsychotics. While it is difficult to determine any individual biomarker an endocrine dysfunction will be possible to diagnose. Damage to the thymus can cause psychotic symptoms and so could a defective pituitary.

Where this is suspected an endocrinologist should be consulted. Endocrine defects will affect drug metabolism and should be explored.

Neurosci Biobehav Rev. 2013 Jun;37(5):860-95. doi: 10.1016/j.neubiorev.2013.03.024. Epub 2013 Apr 5.

Current status on behavioral and biological markers of PTSD: a search for clarity in a conflicting literature.

Zoladz PR1, Diamond DM.

I have spoken to a member of the new team and this person sounded nice but I did point out that I felt that my daughter had a physical problem – therefore I would need to take her for tests and refer her to an endocrinologist.

I have looked up NICE guidelines but could not see any recommendation for the current treatment which is above the dosage it should be ie 350mg Clozapine whereas it should be 100mg and I need to take this up with NICE as others could be getting over medicated. Anyway I saw some recommendations but it is clear to me that the treatment is wrong and needs to be reviewed. Also now at long last the blood tests have been done I am awaiting the results and so are the rest of the family. What worries me is that Elizabeth has been placed somewhere where it is not a suitable environment to alter the treatment to what is correct and that is not 350mg. In an open and lovely country environment this would have been better in my opinion and this makes me all the more determined that Chy Sawel is set up. I am not the only one who feels this way and now everyone has passed on their email addresses to me and many people are keen to see such wonderful change. The mistakes that have been made with my daughter’s care should be learned from and that is why I am making it public and all the more reason for a centre like Chy Sawel to carry out proper assessments to check on someone’s physical health which at the moment is being totally overlooked in favour of drugging. If a terrible mistake has been made and someone given the wrong treatment then this shows the need for somewhere where there are proper and thorough assessments and not only that humane treatment.

It was good to meet with all the parents again and we have formed a Committee now and discussed the business plan.

I now have all the minutes to prepared from this meeting and this week hopefully will have the results of the long awaited tests and I need to ensure that the consent is passed on to the new GP in accordance with my daughter’s wishes so that I as the nearest relative can check on her physical health which is something that no one seems to care about and in terms of risk factors should come top and this is something that should be emphasised at Tribunals for instance and that report with the correct diagnosis of PTSD should not be overlooked.

More Cooperation between psychiatrists and endocrinologists and a lot less between psychiatrists and drug companies is what is needed. 

I wonder how many people like my daughter are being misdiagnosed because of lack of proper assessments and tests done.    There is a condition called Selye’s Generalised Adaptational Syndrome where sustained stress has caused severe endocrine disruption and this is not just applicable to trauma cases in respect of armed forces.  This can also be applicable to cases like my daughter and this would explain why the drugs do not work.  Liver enzymes such as the P450 group might be compromised by an undiagnosed condition such as Selyes.  It is no wonder why my daughter is not getting better if she is unable to metabolize the drugs which would explain why she has wrongly been prescribed Clozapine –  it is worthwhile having the P450 liver enzyme tests done but why are these not provided to everyone diagnosed as being treatment resistant like my daughter and why are they not when someone’s physical health is at stake.  By just carrying on with the same treatment it could be harmful to the patient like it is to my daughter. I have had some private tests done which have proven the decline on my daughter’s physical health.  Patients who are caught in a revolving door style trap like my daughter was should be given the P450 liver enzyme tests as a matter of course and if someone has suffered trauma and the drugs are not helping then they should be given the correct treatment and in the file that my daughter has the correct treatment is intensive trauma therapy and I thoroughly agree with this.  There should be specialist centres like Chy Sawel set up that properly look at assessments before these drugs are given in the first place and offer the correct treatment unlike what is currently available – continuous drugging regardless of any underlying physical problem caused by the severe stress over a long period for instance.    My daughter was on Metformine for a long time and yet this should not have been given as the notes passed to the GP were vague.  “Weight loss” but no proper explanation given –  well I have read more about this and wonder if there is a problem with endocrinal function and now I want a re-assessment which I will have to pay for privately but this should be available to ALL patients as a matter of course and not just to assume that a patient has purely a mental health condition instead of investigating further into physical conditions.  I have just been reading about C-reactive protein (CRP) which has been associated with a propensity to traumatic stress responses  – thee seems to be some links with problems involved in drug metabolism.  Some people have severe reactions to stress whilst others seem partially immune.    I have read that C-reactive protein is involved in the inflammation process which is an endocrine function linked to the cytokine interleukin-6.   Stress can affect so many people in different professions and having read this there needs to be more research done –  I think the more I have been in stressful situations the more ability I have had to cope with this but yet there are others within my family who have not been able to cope and so I am extremely interested in what I have been reading especially when it could well be that response to stress, like response to impact injuries is partially biological rather than purely psychological.  

 

Cytochrome P450 refers to a group of liver antigens that break down drugs and foodstuffs but some people are deficient in several of the crucial ones that metabolise psychopharmaceuticals and some psychopharmaceuticals inhibit some of the P450s- (CYP2D6 in particular).  This could explain why patients like my daughter do not respond to drug interventions and in some cases suffer from very severe adverse reactions.

There have been observations made on the effect of stress on the endocrine system which clearly link hormonal damage to psychiatric episodes which has been observed over the past 100 years.  Hypothyroidism  as a result of extreme stress can  manifest itself in psychiatric symptoms.   When a patient is a non or poor metaboliser and when there is no evidence of any real psychiatric condition then psychiatric medication  should not be given.  Whilst Dopamine (D2) receptor antagonists seem to work in treating florid symptoms of schizophrenia they are dealing with outward signs- not causes or aetiology.

There are so many theories as to what causes mental illness when in fact people should be questioning the treatment and checking out the physical health condition of someone who could be suffering from a stress induced illness that involves a severely disrupted endocrine system which manifests itself in both physical and psychiatric symptoms.  I have not yet read the book by Professor Healy called Images of Trauma but am going to order some new books now including that one which has been recommended to me along with Rethinking Psychiatric Drugs by Dr Grace Jackson and The Sickening Mind by Paul Martin which has been  highly recommended to me and covers in detail the effects of stress on the brain and immune system and gives a detailed account of the effects of PTSD on mind and body.  I am going to look on line to order these books shortly to add to my collection.   

When I have spoken to professionals many do not even seem aware of Selyes Generalised Adaptational Syndrome and it is of concern to me as a mother that many do not know about this and yet happily prescribe drug after mind altering drug without any question and now I as a mother am having to question what is going on and intend to look into matters further.   This aforementioned extreme condition, caused by excessive stress response releasing glucocorticoid hormones which act on the immune system.  This can affect white cell count and block lymphocytes in the thymus.  The thymus is very much associated with conditions which mimic full blown psychotic illness and it is damaged it will cause psychotic signs and symptoms which may be mistaken by psychiatrists for schizophrenia or bipolar. 

IT IS ESSENTIAL THAT ALL PATIENTS HAVE A CHECK ON ENDOCRINE FUNCTION TO DETERMINE IF THE THYMUS IS FUNCTIONING CORRECTLY.

Some people known as high reactors have extra responsive hypothalamus-pituitary-adrenal systems and might have a psychotic episode triggered by a sever stressor causing an endocrine response in this system. 

Since it is well documented that those with damaged thyroid or thymus manifest psychotic symptoms that respond quickly to endocrine rather than psychiatric treatment what on earth is going on that none of this has been properly investigated with my daughter and probably many other patients. 

Anyway the last time I spoke to Elizabeth she was talking about packing for her move which will take place tomorrow to a care home organised by social services.    One of the conditions of my daughter’s release is that I do not interfere with the treatment of my daughter but as you can see I as a mother have every reason to question the treatment of my daughter and next week I will phone the GP as I now have consent to deal with this GP that will be passed on to the next GP.  It does not help when teams try their best to exclude families and play on confidentiality when in fact this whole matter is of public interest in my opinion.   If patients are not being given the correct treatment then this is likely to put a strain on the NHS due to physical health problems.   Neither the NHS or private sector hospitals have properly looked into this situation and have dismissed the private reports I had done and have also dismissed a report by the independent psychiatrist I appointed.  They just wish to stick to a diagnosis which we as a family think is totally wrong and carry on with drugging as this is the easy way out.  However I have looked at evidence of how very wrong the treatment is and how this could be harmful if no review of treatment is given when it does not work or if there is any question whatsoever as to the diagnosis.

Elizabeth liked the care home but only stayed there for 2 days and none of us have been properly told of her move.  It was only when I telephoned the consultant psychiatrist right at the end of the day on Friday that I was told of her move.  The location of where she will be sent is a lot nearer to Wales and that means I can go down for the day.  No doubt the same treatment and same level of drugs will continue as this is hardly the place to do a proper review of the drugs.   I have heard it said that being condemned to a life of drugging is whilst appalling to contemplate but being confined to a secure unit for life is far worse but I would say in response to these comments that this is of no consolation when my daughter has not had the correct treatment from the start and has been misdiagnosed and now has a new diagnosis which has been kept from her by the team and there have in the past been disputes by professionals over the diagnosis so therefore none of these comments give me any consolation.    I also know for a fact there are experts in this country who know how a drug withdrawal should be properly done and this needs to be done with close medical supervision which would include serum level tests as well as monitoring for agranularcytosis.  Also these drugs drain the body of nutrients and this is why I look forward to when Dr Walsh comes over here and would recommend his book “Nutrient Power”.  If the right facilities were provided with proper monitoring by professionals who know how the drugs work properly then someone like my daughter could safely come off the drugs however nothing is being done properly in this country and someone is given a life sentence as there is virtually no help and no facility for them to go into even when a diagnosis is in question and perhaps all along they have been misdiagnosed when they have a physical condition that manifests itself in episodes of psychosis.    I think it is shameful what is going on in this country and I want something done about it.  I am not alone there and I am looking forward to meeting with other parents to discuss the setting up of Chy Sawel.  Dr Walsh needs 20 doctors to get involved in this project and there is interest from doctors too who are quite rightly fed up with the current system which clearly is not working when the acute wards are overflowing and it is wrong there is no choice.  It is highly unprofessional of some of these doctors and social workers to sit there throughout meetings and smugly smile and I have seen this more than once.  In such a high risk profession what checks are being done on these people who are all too happy to dish out drug after drug to my daughter when her diagnosis is in question.  They try and put all the blame on the family and upbringing and they try to get rid of you as the nearest relative by bullying and even saying nasty things to the person that is in their case about a mother who has questioned the care and found it to be wrong.   If a system is wrong then how on earth can nurses and doctors provide the correct care – it is not that there is no decent staff and that they are all bad but I do not have a good word to say about a system that does not look at physical health first and is quick to label someone to the point they just give up with no hope and then there is not enough support in the community leading to that person going downhill.

 

I do not like the attitude of these psychiatrists who let power go to their heads or social workers come to that.  Someone has warned that my challenging of these professionals could well put my daughter’s life at risk for the reason that they are only interested in their own power, position and money – nothing has improved in the bigger picture over the past 50 years that they will react by increasing the drugs and being generally nasty to the patient and their family.      Some people have said to me that it is a waste of time that nothing will be improved however I would say that  I have overwhelming proof that what is going on is wrong and that I can back this up with relevant research papers.   For anyone who says – it is too late or you may as well give up now.  I would say that it is never too late and as regards risk to my daughter well I am concerned right now about my daughter’s  treatment that her life being put in danger as she has been MISDIAGNOSED and is not having the correct treatment so now I want all the tests done to ensure she gets the correct treatment. 

It is risky to withdraw someone off drugs and if done too steeply this will fail and if not properly monitored it is life threatening to the patient however that is no excuse as when there is a blood disorder or serious problem I have heard that someone is in fact taken off the drugs but in the most shocking and terrible way.  There are people who know a lot about these drugs and certainly these comments do not apply to social services or to all psychiatrists who do not know the full workings of the drugs in order to properly do any withdrawal.

Myself and other mothers want Chy Sawel set up where everything is done properly and there is proper monitoring, where there is such thing as open dialogue, where families are not treated like nothing and included where possible and proper look at nutrition as this is so very important.  Antipsychotics are prescribed long term – therefore establishing a routine of metabolic monitoring is vital so that metabolic changes can be tracked and dealt with.  The paper I am reading gives a lot of information on how things should be done, how to monitor, when to monitor, whom to monitor and the follow through ie. this would involve collaboration with primary care providers and other clinicians and referral to a dietician or metabolic clinic when high risk patients are identified like Elizabeth. 

www.psychiatrictimes.com/cme/metabolic-monitoring-patients-antipsychotic-medications/page/0/4?GUID=e7ed468c-BA8B-4A19-8A47-AC23F4C5219F&rememberme=1&ts=03012014#sthas.yhn2JlyN.dpuf