At first I thought this title which is recognised by the current team was ridiculous – I thought that “treatment resistant” = failure. I have since been reading up on this and have looked further as I do not accept this diagnosis and I am correct not to. There is no such thing as “treatment resistant” – it is all about the patient’s ability to metabolise the drug and I have been looking at Metabolic Monitoring for Patients on Anti-Psychotics Medications and also I would like the necessary tests done on Elizabeth regarding P450 cytochromes – as I have learned that many who suffer from psychiatric symptoms are most likely victims of injury not of disease and I believe that to be the case with Elizabeth and yet this has been dismissed by doctors and psychiatrists responsible for her care. When I have requested such tests the GPs do not know anything about this and I have not yet spoken with the new consultant psychiatrist. What on earth is going on when such important tests are not readily available to everyone? The fact is there is no biological marker for schizophrenia and it is therefore impossible to say it is “treatment resistant”. If my daughter is being given drugs when she is treatment resistant my fears are for her physical health and I now want further investigations and have had to look for more specialised care than what is currently available for the majority. The Government should be doing something about this as a matter of urgency.

I would just like to add that metabolite testing into routine medical practice not only would save money on drugs could ensure a patient has the correct treatment in line with their physical health instead of continuing with a drug treatment that could do more harm than good. Ultimately this would save money to the taxpayer as the wrong treatment could lead to serious long term health problems that could otherwise be addressed.

It is wrong that doctors continue to drug patients who have no clue as to how the drugs are affect the patient physiologically.

Patient’s lives are being put at risk whilst drug companies profit and this fact does not just apply to those with MH problems either. Something needs to be done about this situation.

When I came to collect Elizabeth I did not recognise her as she had changed her appearance completely by changing her hair colour. I cannot truthfully say I like it but it is Elizabeth’s choice. We had a nice day out at Woburn Abbey but were limited to what we could do. Elizabeth likes animals and I could not think of a better place to take her but of course she has trouble walking now and feels dizzy and needs to hold on to my arm all the time. She also gets panicky when sitting down whether it be in a public area or open spaces now. There was never any problem like this before she was hospitalised /imprisoned for 3 years. I not only blame the length of time spent like a prisoner on a Section 3 but also this drug is no good for someone who is “treatment resistant” as all I can see is Elizabeth going downhill whilst I am desperately trying to think of a solution and get her the help she needs. There is no help under the hospitals ie psychiatrists or GPs when it comes to the specialised help that Elizabeth needs now. I have had to look much higher than this to find solutions.

Anyway I drove back from Woburn Abbey and we had a nice peaceful time at home. I had ordered all the shopping on line for a change and the next day I cooked dinner in between cleaning and doing chores whilst Elizabeth was occupied with her sister’s company. I took Elizabeth out to a local park attraction but like at Woburn Elizabeth could neither sit in the café for long or walk around. We did not stay long. Elizabeth has been very happy to see her cat and at one point she had to sleep for a while as she did not feel too well. Other drugs have been supplied alongside the Clozapine – these other drugs are Lorazepam and Paracetamol. I am going to find out about more about this. I am not sure it is a good thing at all that Elizabeth should have more drugs on top of this highly sedatory chemical Clozapine and I shall find out for sure. Also I have been reading up on NICE Guidelines and of course I have applied for their panel and am waiting to hear from them. I see no mention of Clozapine as the treatment for the new diagnosis of PTSD. Clozapine is certainly not indicated in PTSD in either the NICE guidelines )which incidentally are more about cost than efficacy) or the ICD-10 or MImms or the Maudsley or any main psychiatry textbooks. I already know that PTSD is a reactive condition that can worsen due to either prolonged exposure to severe stress or from a single life threatening traumatic incident (or perceived one). Medication (or rather drugs as I see them) could only be justified to reduce florid initi9al or acute symptoms but would NOT WORK IN THE LONGER TERM. Psychotherapy or CBT is the only thing that works on PTSD or Eye Movement Desensitisation Therapy, if the intervention is early enough. It is alarming that the team have mistaken my daughter’s diagnosis of PTSD which they are conveniently ignoring in favour of a label of paranoid Schizophrenia Treatment resistant which not one of us in the family believe. PTSD is a reactive psychosis and is of the sort that would be expected to be a single episodic event rather than a lifetime chronic condition and that is why atypicals are of limited use in treating it. Not only is my daughter’s treatment wrong in relation to a report she has been deprived by the team stating clearly PTSD – but the team have chosen to ignore NICE guidelines. I hope I get accepted on their panel as I have vast experience as to how these drugs have affected more than one in my family and there are other forms of treatment I have seen that worked whereas the drugs have all failed miserably. Instead of giving Lorazepam and Paracetamol for a headache Elizabeth went to lie down and what could be a better cure than this and accompanied with the pet cat Fluffy. I have not used one single extra drug and I am checking this extra drug treatment out thoroughly as this is very wrong in my opinion.

I have been to see the new GP before we left to come home. I took the new GP some research papers all about PTSD and told her all about the CEP and mentioned about underlying physical conditions and that I wanted my daughter to see a top leading Endocrinologist. I am also looking to have private tests done and have contacted the organisation responsible for the tests I want that are not available anywhere else. The GP had never heard of such tests for P450 liver enzyme – she is not the only expert that looked surprised – well they were all interested in such outcomes of the tests but I had hoped to arrange these during the time I am off. However these tests are so important that I have had to enlist the help of other family members in case I cannot get the time off work to take Elizabeth. Without the necessary proof of any underlying physical illness the team will just plod on and on and one dishing out the same drugs for a condition that is not the right one as it is very wrong of the team to ignore a report by a top leading psychiatrist of many years experience. Not only that I have sought other top level advice and done my own research and have plenty of this to back up my claims that my daughter has got underlying physical health problems and I as a mother want these thoroughly checked out so that she can get the right treatment and not only that I wish to share it. I wish to share the best care I hope to provide for my daughter not readily available so that everyone can benefit as it is appalling that I have had to go to such lengths when this should be available automatically through the GP. Anyway the GP did not have long to talk to me and said she had other patients to see when I showed her some evidence. I told the GP that my daughter had been given a life sentence that in my opinion was more important than a 10 minute slot and she admitted she had had no time to look at the medical files. Elizabeth has been in the care home now for a couple of months I believe and this is plenty time for any new psychiatrist or doctor to look at records especially in light of the serious level of drugs my daughter has been plied with.

Well the GP like the other private expert I have contacted are extremely interested in what I was saying. They had never heard of such tests and I hope now that this knowledge will benefit other patients – it is only because of the declining condition of Elizabeth that I have had no choice but to look thoroughly at everything and I do not believe in these labels – I believe in EVIDENCE – Scientific evidence which is what the CEP is all about and I would urge every parent to have a look at this organisation. The GP and private expert I contacted had never heard of the CEP – well they have now as I have told them.

I have been busy reading the research paper by a leading expert who I have contacted and in it is reference to liver enzymes and metabolism.

Leading experts would say “they are astonished at the ignorance amongst the medical profession about pharmacology. Concomitant prescribing without a thorough knowledge of first pass is negligent in the extreme. It is like taking control of a Jumbo Jet having had gliding lessons, except that drug accidents kill far more people than air crashes do.” “It is also absurd that ANYONE claims not to know about such tests. The Oxford Clinical Pharmacology and Drug Therapy refers to them as does the Maudsley Prescribing Guide. Quite obviously if it base ben determined that the P450′s metabolise drugs then they must have been tested somewhere. I as a mother would conclude that MEDICAL PROFESSIONALS ARE HOPELESSLY OUT OF TOUCH WITH MODERN PHARMACEUTICAL SCIENCE. What is more I have research on Metabolic Monitoring for Patients on Antipsychotic Medications, I have looked with interest at Selye’s Adaptational Syndrome and have been able to pass on such details to a friend of mine who son has come back from Afghanistan and who to my horror was about to see a psychiatrist. However as I have said there are some good psychiatrists but I have yet to meet the new consultant psychiatrist and am wondering what he is like after the one at the private sector hospital. This new psychiatrist was not available to see me and I do not know how often he visits my daughter or whether he knows that the dose of Clozapine is too high and should be 100mg. This information should be clearly mentioned under the NICE Guidelines so there is no doubt about what is correct.

I have made sure that Elizabeth is well aware of the new diagnosis of PTSD and she is more than happy to go along with the tests in order that the correct treatment can be given as what I am seeing now is not in the slightest bit therapeutic. I am shocked by the decline of my daughter – so shocked that I wish for all these young psychiatrists at the Institute of Psychiatry to be well aware of this. The training they are getting is wrong as it does not take into consideration physical health or proper assessments.

So the question is how many are misdiagnosed.

I have listened to other mothers who have given up – I have spent years fighting for better care however I wonder how many have really questioned whether the care is right for a start, whether the label is correct and whether the drugs are correct or not. First of all I looked at nothing else but the care and what had gone wrong but now I am looking at Evidence based science and every GP and Psychiatrist should look into all of this as I hope more and more mothers will question this as I am doing.

I am left thinking as well back to the childhood of Elizabeth. She was very ill as a small child. She was in and out of hospital with asthma and then had to undergo an operation for a strangulated hernia which the GP failed to diagnose first of all and then she was rushed in as an emergency. As she grew older the asthma disappeared and I was obviously pleased and one thing that did come to light later on when Elizabeth was referred to MH services was a cyst – this is an extra dural epidermoidoma/primary congenital cholesteatoma – an incidental finding. However there was evidence of mucosal thickening within the right maxillary antrum with minimal thickening in the left. I have plenty of charts and prescribing papers as well. When I checked with the new GP – the new GP had not been sent all of these papers. It is a good job I am checking on what is going on. This is where things go wrong where teams transfer files and this
is not done properly and then I have had to supply the information. The GP needs to check on this in my opinion and as she does not have this information I will supply it along with all the research papers that could benefit all the patients she has. The GP should be questioning what drug can be given safely with that prescribed by the consultant psychiatrist. As I am still astonished about the prescription of Metformine it is natural that I want further tests done and I am prepared to pay for such tests not available on the NHS.

If only an Endocrinologist can prescribe Metformine off label then I want to know why.

Elizabeth is constantly hungry – I have made sure there is nutritious food in the house – plenty of fruit etc. I have also been out with Elizabeth to buy some gluten free bread from a wonderful shop locally.

Anyway I shall keep you informed as to how I get on with finding the correct care for Elizabeth that could benefit everyone who has a diagnosis of “treatment resistant” when in fact they could have PTSD with underlying physical health problems.

The other thing I have been interested in and am reading is PANDAS. I shall write about this next time and maybe Elizabeth will wish to write herself on here tomorrow if she feels up to it.

Tomorrow I shall be driving to see my daughter and am pleased it is not so far to go now as before. The surrounding area where Elizabeth is very nice and I hope to take her out to a very nice place nearby as she likes animals.

I am hoping to see the GP but I am not sure the consultant psychiatrist is around – hoping the new psychiatrist is just like Dr Moncrieff. I will mention about the training for Dr Walsh and programme that Elizabeth is keen to take part in. That is why I had the private tests done for when Dr Walsh comes over and he is keen to carry out training for doctors which I am all in favour of so that Elizabeth gets the correct care – minimal drugs, holistic care and of course thorough assessments. The current treatment is not correct as I have already looked up NICE Guidelines in this respect.

When people say it takes time to make changes I know changes can be made immediately when things go drastically wrong – my biggest hope is the CEP. It would help if the press was to report things properly so that people are aware of what is needed in terms of change. I am not criticising every professional but I am criticising a system that needs urgent change. One of the main problems is failure to diagnose properly in the first instance and no proper assessments given to look for underlying physical causes and so it is not helpful to have early referrals if the care is wrong like it is at present as half the tests are not available through the NHS and without these tests there is a danger of patients being misdiagnosed. I see no mention for Clozapine in NICE Guidelines as treatment for Elizabeth’s condition of PTSD and I am informed that CBT is the correct treatment so this is something that needs to be changed for a start. The GP is responsible for Elizabeth’s health and I am still left wondering about the Metformin – I cannot believe a leading worldwide hospital has given these two drugs wrongly and Elizabeth has been on them for no reason for the past three years. Certain physical conditions can be mistaken for Schizophrenia and I suspect that such mistakes have been made in Elizabeth’s care. Instead of a thorough assessment to check on this or even to question whether the diagnosis is correct nothing has been done.

Anyway I am very happy that I am currently on holiday and looking forward to seeing Elizabeth and I have given thought to what I should do to ensure that Elizabeth does have the correct treatment especially if it is discovered there is an underlying condition/s. I will be discussing physical health with the new GP hopefully tomorrow.

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 DilemmasHigh 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.”

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