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?

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  

Today I telephoned the GP as we as a family have been worried about Elizabeth’s physical health and Elizabeth has given me consent to deal with the GP which will be passed on to the new GP as Elizabeth was with me when she openly gave her consent.  I think Elizabeth knows that I am the one who cares about her physical health.  I am the one who has read a report by a consultant psychiatrist who I truly respect who has had many years of experience.  For once the diagnosis sounded right to the entire family who know the full background of Elizabeth and everything that has happened to her including the serious incidents that have been covered up.  The new diagnosis is PTSD and I as a mother and nearest relative am appalled by a team who have not given a copy of this report to Elizabeth when she has a right to know what is in it including the fact that the current treatment is NOT recommended.  So the team have knowingly been giving CONTRA INDICATED drugs until I as a mother pointed out how wrong this was.  Immediately 500mg of Metformine was taken off the prescription and I have been patiently waiting for the news –  we as a family need to know if Elizabeth has diabetes.  If Elizabeth has this then she would need a special diet.  So today I telephoned the GP to find out –  apparently Elizabeth was due for an appointment yesterday to have a blood test and did not turn up.  So the next thing I did was to telephone the private sector hospital where Elizabeth has been for over 2 years now.  I first of all spoke to the Manager and she said she would pass on the message to the new consultant psychiatrist.  For the first time I spoke to this new consultant psychiatrist yesterday and he sounded OK however he disagreed that the therapeutic dosage of Clozapine should in fact be 100mg and Elizabeth is on 350 mg –  I have sought top level advice regarding this and contacted NICE.  I have received an automated reply so far and am waiting to hear from them.  Surely the minimal of drugs should be given but it would appear that no one could care less about physical health and it is a good job that I am looking at this very carefully and I would advise all mothers to do the same and to check what is going on when there is more than one team involved as quite often there is not a good level of communication.  I am not blaming the GP but in fact the hospital should have provided every little bit of detail as to the real reason why Elizabeth is on Metformine.  I am assuming at this stage that something has shown up on tests and in fact now want further tests done as I have been reading about the research called Selyes Generalised Adaptational Syndrome – now I want every test done necessary including the P450 liver enzyme test.  I am more than happy to pay for these tests to be done privately but my point is that these tests should be readily available and if there is any problem then the family should be told.  

So, Elizabeth did not turn up for the appointment and that is because she was not taken and when I asked why she was not taken for this appointment I was told by the consultant psychiatrist that Elizabeth had eaten first and therefore these tests could not be carried out at and the tests happen to be crucial as even the GP is querying why Elizabeth is on Metformine.  Anyway I told the consultant psychiatrist that we as a family wanted to know the result as we needed to have this information in case Elizabeth had diabetes and needed a special diet.  I asked that the consultant psychiatrist re-arrange the appointment with the GP and I believe this has been re-arranged for tomorrow.  You can be sure that I am going to check on this and ring the GP.  An excuse was made by the consultant psychiatrist that they could not keep an eye on her as regards her eating something first – that to me is no excuse whatsoever and is making me all the more determined to find out what is really going on.   It was during this conversation which took place right at the end of the day that the consultant psychiatrist announced Elizabeth would be moving.  She would be moving by the end of the month.  Originally Elizabeth was told it could take a month and I thought she would be eased in gradually and allowed to stay for a bit longer but now all of a sudden the team want her out of this private sector hospital and away from Wales.    I as a mother really liked Wales –  the area itself is beautiful and it is peaceful but now Elizabeth is going somewhere else –  I cannot say where but she is going to a care home.  Elizabeth liked the placement but my objection is the way everything has been done.   The care home was what was earmarked from the start and the family wanted her to go to a farm-like environment – she was taken to see one such place but did not like it but when asked said she did not meet any other residents and she was not allowed to stay.  Then I was told in writing by her social worker that I should approach the other placement which was Elizabeth’s favourite and arrange it myself. I have previously documented what happened and I was told that social services had arranged the placement already at the care home and that it would be inappropriate for Elizabeth to even go and stay – talk about control and social services even think they know best about the drug Clozapine  –  what knowledge do social services know about the workings of the drugs and what is best in terms of medication for my daughter.  Why haven’t social services or anyone from the team come to that told my daughter about the report stating there is a new diagnosis.  My daughter was recommended a solicitor from the hospital and when I asked Elizabeth if this solicitor has visited the answer was no.   It is not surprising when I have been told that MH law can easily be usurped and I think that this is all the more reason that the law is revised because the weakest and most vulnerable people are NOT being fairly represented.   What gives a team the right to treat a family like they are invisible – I suppose the power goes to their heads and they forget they are funded by taxpayers and I am one of them and they think they are greater than God.   I call it bullying in the form of exclusion and bullying in the form of harassment when they want you to agree to a section 3 and then this section is dragged out for a lengthy time.  In fact under the private sector hospital EVERYONE IS SECTIONED and I have heard these sections go on for as long as 3 years.  How much money is that I wonder?    I would like to know how much the other placements are as opposed to the one that social services chose.   If Elizabeth had chosen herself without any influence and had been allowed the chance to stay at the other placement I would have felt happier. 

One of the conditions of Elizabeth’s release is that I do not interfere with the drugging.   I have sought top level advice. –  I have a right to know if my daughter has diabetes for a start or any underlying physical health problem and so does Elizabeth who has not been treated fairly at all.  Also I have a right to seek another appointment and pay for whatever private tests are necessary.  For instance it has been recommended that Elizabeth sees an endocrinologist and if Elizabeth is not metabolizing the drugs then the drugs could be doing more harm than good. 

What kind of profession ignores physical health for the reason of convenience.  Well I am not the kind of person to take the easy way out of anything –  if something is wrong I will seek to put it right and a team should have the utmost concern in relation to Elizabeth’s physical health.

It should not be ignored that more than one expert has advised me and if it has been covered up that my daughter has got a serious medical condition AS A DIRECT RESULT OF THE DRUGS GIVEN. then the team should have the decency to advise the family. 

Like I have previously said Elizabeth would need 24 hour care now.  Physically she has declined to the point the rest of the family are concerned.  A young person like Elizabeth should be out enjoying herself but she is exhausted – the drugs are highly sedatory and should never have been given to Elizabeth in the first place as it was against her wishes and she signed an advanced declaration.

I am not alone as others have written to me to tell me how they have been threatened with displacement  as regards Nearest Relative.

People are becoming more outspoken about what is going on not just in the UK but in all so called civilised countries.  There is a lot of money to be made out of someone like my daughter and the appalling thing is that no-one cares. 

Very soon I shall be meeting with the mothers/parents on 4th March to discuss the business plan of Chy Sawel –  if only this was set up  and unlike the team I respect and wish for patient input and involvement with my daughter’s care.  It is not about qualifications it is about the way someone treats another human being.  It is about listening and I will leave you with my daughter’s comments “WHY WONT THEY LISTEN, MUM?”

My daughter Elizabeth has been in hospital a long time now and has been away from the family for quite some time.  I have documented what I see as the shocking treatment of my daughter who was moved away from local care to a supposedly worldwide renowned hospital – The National Psychosis Unit.  I have watched my daughter go downhill and be experimented on with drug after drug that has not proved effective – this is why I am against drugging as in some cases the drugs do not work.  With a string of diagnoses I have become interested in looking further into everything and have uncovered things that are just not featured in the press.  I have come to the conclusion that it is either through fear of publicity or fear of stigma that people resort to silence and I can well understand why because I am not the kind of person who will sit back and do nothing when I see things are wrong.  Things are very wrong with the care in the UK –  you can hardly call it care – it is a system that is all about control and the people in control are none other than psychiatrists and social services who are often a law unto themselves.  Having said all of this I am delighted to say there are a few good people –  I unfortunately have not come across many.  These people may say that if they spoke out against their profession they would end up jobless – they stay silent because of their families and income but do not like what is going on. Then there are some outstanding people I have recently come across – people who do stand up against their profession and I am proud to know such people.  May God praise them.

As far as I am concerned everything on this blog is reported with the utmost honesty.  It is a simple blog – I am not a professional and I am just a mother.  I do not make out that I know better and that I am one above the so called Professionals however all I want is honesty.  I have not seen honesty and I am going to share with you in the hope that things can be improved what I am currently going through.

It is not long now to when Elizabeth is officially off a Section 3.  She should never have been put on a Section 3 in the first place.  If things had been done fairly Elizabeth would not have been treated the way she was treated going back to the Bethlem Royal Hospital.  However things were not fair well before then and there were incidents that I cannot report on this blog that led me to complain.  A complaint should be dealt with in a nice manner –  it should not be documented that you as a mother are for instance an overbearing woman, over protective – someone who abused her daughter as a child.  I can ignore most of the comments but the latter one prompted me to share what I had seen in the files with my younger daughter who showed Elizabeth who was on a hospital ward at the time.  “I did not say this”  Elizabeth was angry –  Elizabeth was on a cocktail of mind altering drugs as always as this is what the care is mainly about in the UK – MIND ALTERING DRUGS.  Whilst on these mind altering drugs the team think they can say what they like and they certainly do – if you dare to complain you get slated in the files and accused of being an unfit mother or words to that effect.  When files are not lost and actually passed on to the next team they can easily get the wrong impression and this can go on and on and on.  The teams are not interested in  meeting you and listening to what really happened in the past to that person.  It is NO WONDER THE CARE DOES NOT WORK.  If the underlying causes of what happened to that person are not addressed it is simple that person will never get better.  The team with all their high qualifications have failed to really address the underlying problems because it is far too easy just to drug someone up, control someone and there is money to be made in this “care” and treatment.  Private sector hospitals are taking over where the care on the NHS is failing people like my daughter and they are raking in the money to provide care of continuance of drugging but in better surroundings and perhaps nicer facilities.  “Whoever thought of this care, Mum – thank you – I hated it where I was”  Well I do not deserve thanks for thinking that my daughter would be better off under private sector care because a consultant psychiatrist did not like me and there is nothing like an angry embittered psychiatrist so I have been told by others who have experienced similar problems.  A psychiatrist and a social worker gets away with a great deal whereas myself and an ordinary member of the public would be prosecuted.  I have never experienced such bullying before but here is a comment from someone in the know –  this relates to the replacement of nearest relatives “I wish I had a £ for every time I have seen attempts made to displace nearest relatives.”  

How about this – professionals who have spent “many years observing faulty drug withdrawals carried out by psychiatrists who know absolutely nothing about pharmacokinetics or dynamics just as the doctors who prescribe without testing for tolerance, contraindications, concomitant prescribing or drug metabolites these people are a menace – and apparently there are loads of them about.   By the way my daughter has been taken off 500mg Metformine a day thanks to me challenging what was going on and my research into contra indicated drugs.  My advice to everyone is not to trust doctors if there is hospital treatment involved in addition as the drugs are being prescribed by two different sectors of care and there seems to be no communication and the GP when challenged could see no reason why my daughter was on all of these chemicals. 

MESSAGE TO ALL CONSULTANT PSYCHIATRISTS

100mg of Clozapine is a therapeutic dose –  how come my daughter is on 350 and how come someone I know is on 800mg?   I have today contacted NICE guidelines about this unsatisfactory situation however I think I need to speak to Mr Lamb and Mr Burstow again as guidelines are not being followed and the only thing that worked for my daughter is not even included under NICE guidelines and that is hypnotherapy – so how come this is available under SOME local authorities?  Why should there be a post code lottery?  Mr Cameron said there is plenty of money to spend as regards the recent flooding disaster but I do not for one minute deprive that going to the flood victims however all this time I have wanted decent care set up in the form of Chy Sawel and still there has been no Government help –  it would not take a great deal especially when you work out what is being wasted right now on care for people light my daughter who are written off like rubbish and classed as being TREATMENT RESISTANT.  I had originally thought this to be ridiculous but I have since had top level advice that apparently it is far from ridiculous  –  in fact there are many people who are  treatment resistant not only to psychopharmaceuticals but to other drugs and not surprisingly as some people cannot metabolize the drugs and no proper tests are given in the first place  The P450 cytochromes play a critical part in metabolising many drugs and just about all psych drugs.  If anything inhibits or enhances their effects it can have a very serious consequence for the patient.  I could not agree more with this as I have seen nothing but shocking side effects and suffering of my daughter who has been told she has to take these chemicals for the rest of her life.    God knows what damage this extreme experimentation of so many drugs has done to my daughter but one thing is for sure this team do not care about my daughter’s physical health otherwise they would work towards a solution.

I am now going to share with you the latest on my daughter’s placement.   My daughter is not a risk to society or to herself and has not been for some time and she is soon to be released from section but that does not mean she will be allowed to come home and the reason they wont let her home is because they do not trust me – it does not matter how many times you say you would not attempt to get her off the drugs – they are using this as an excuse – a means of control.  The manager of social serveics tried to say the other day that I did not want her home.  That is far from true but in the past I have not had support in terms of direct payments and a person centred approach failed to provide ANYTHING. I tried to find out what my daughter wanted via hypnotherapy with a top leading hypnotherapist in Harley street so that they would provide something for my daughter but instead they just tried everything they could to stop this from going ahead and yet it benefitted Elizabeth who asked to go again. It was like a miracle – she was like her old self again and everyone was so happy.  I would have Elizabeth home but home is in an environment that is not peaceful – a city like environment and Elizabeth could not even stand going shopping near the hospital where she currently is. This environment where I live could make Elizabeth worse initially as she has not even been let out to the corner shop and suffers panic attacks worse than ever before. After 3 years I thought it would be better for her to go to a farm-like environment – somewhere peaceful before coming home again. However after th4 way Elizabeth has been treated I wonder if home would not be better than where she is now as it is the wrong environment for her also. The whole family were impressed by placements we saw in a country environment different to a hospital or scheme in the community.  Elizabeth did not like one placement but the only reason she gave for that was she met no one – everyone was on “allocated time” – in other words Elizabeth did not really get to see this placement properly and it sounded so good.  However I got a different opinion when I spoke to one of the staff and she sounded harsh and dismissive towards me as a mother when I approached the scheme as I felt that Elizabeth once again was not being treated fairly.  As much as I and the rest of the family liked this and one other different kind of environment to hospital and care home, Elizabeth would have had the family approval as to her decision.  However I totally object social services stating IT WAS MY DECISION.  Undoubtedly I wanted Elizabeth to go and stay there and see what she thought but she has not been given the chance by social services. 

Email from social services:

Dear …………….

Please accept our apology for late reply –  In regards to the …………………………..it is alright for you to make correspondence with them directly as you or your solicitor may have previously done before.  As you are aware I made a referral to them back in October/November 2013 so they still have the details they need to carry out an assessment.” 

This email was dated 19th February 2014 and sent by my daughter’s social worker copied in to her Manager.

My email to them:

“When I last spoke to …………..it was discussed that it could not be agreed to paying for 2 placements ie hospital as well as ………………………….

I said that we as a family could pay for a stay at ……………………but heard nothing since and I would like an update of what is going on and so would the family.” 

As I heard nothing from social services I contacted the placement today and they wrote to me the following:

“I understand that ………………..is happy with her choice of placement and therefore will be moving there in due course.  We do not make a charge for assessment stays at our service.  The confusion may have arisen as hospitals sometimes make a charge to accompany patients to our service and we categorically do not make any charge for overnight stays.  As ………. is happy with her choice of accommodation for her to visit our service Social Services do not wish to pursue the referral to our organisation  I am sorry we cannot be of any further assistance.”

MY RESPONSE TO THIS EMAIL FROM THE PLACEMENT OF TODAY’S DATE:

“I have spoken to ……………at social services.  I understand that they are not prepared to pay for a stay for my daughter in addition to the hospital and I have said that I would be prepared to pay and they said in return that they had already made a referral to yourselves and that I should contact you myself to arrange a stay at your placement.  She spent 2 days only at another placement but yours was the one she really liked and I do not think it fair if  my daughter has not got the opportunity to stay at the placement she most liked.  I therefore wondered if you could accommodate my daughter for a couple of days in order that you can carry out a proper assessment and please let us know how much this will be.  I appreciate you originally said any referral had to come from them but now social services have told me to contact you direct in this respect.  They say that they  have already referred my daughter to you but as I am prepared to pay that the emphasis is on me to deal directly with yourselves.  I spoke to ………………….her social workers.  In the meantime I understand an advocate has been to see my daughter to try and get her decision on the other placement but my daughter told me she was undecided about that and wanted to see what your scheme was like.  I only spoke to her at the weekend as well.”

FINAL MESSAGE FROM THE SCHEME:

Dear ………………WE CANNOT ACCEPT A PRIVATE REFERRAL FROM YOU OR YOUR FAMILY AS SOCIAL SERVICES  HAVE MADE A DECISION TO FUND A PLACEMENT ELSEWHERE FOR YOUR DAUGHTER.  THEREFORE IT WOULD NOT BE APPRORPAITE FOR HER TO STAY OVERNIGHT AT OUR SERVICE – WE CANNOT MOVE FORWARD WITH THIS ASSESSMENT WHEN WE HAE BEEN ADVISED BY …………….THAT ……………..HAS CHOSENTO MOVE TO ACCOMMODATION ELSEWHERE.  AS …………IS MOVING TO ANOTHER PLACEMENT WE NOW CONSIDER THAT THE REFERRAL IS CLOSED AND THE ASSESSMENT PROCESS CANNOT CONTINUE.  AS I HAVE ALREADY STATED …………..(SOCIAL WORKER)..WAS UNDDR THE IMPRESSION THAT WE CHARGED FOR ASSESSMENT STAYS.  THIS IS CATEGORICALLY NOT THE CASE.  OVERNIGHT VISITS AT OUR SERVICE THAT ARE PART OF THE ASSESSMENT PROCESS WOULD BE FREE.  I AM SORRY THAT WE ARE UNABLE TO BE OF ANY FURTHER ASSISTANCE”

I AM SORRY TOO –  I am sorry for all my daughter has gone through – she has not been treated fairly at all by a team of professionals who have created misery within my family.  They think they are above God but in fact God is more powerful than any of them. God has given me the strength to stand up to all of them.

I have been thankful for all the wonderful support I have had from complete strangers.  I have received both praise and criticism but am telling the truth about everything whether people agree or not with what I am doing my motives are of honesty and wishing to see a fairer system. 
I believe honesty is the best policy. If things go wrong with the care I would have appreciated a phone call but instead things were covered up.  When I complained this did not go down well.  I do not think I would work in a profession that is rife with bullying for all the money in the world.

I praise the honest people I have come across and I have had advice from some people because of my openness however I think it is right to be open and honest.  I have been told I should play them at their own game by more than one person but I would much prefer to speak openly and honestly any day and do not want to play games.  I just want Chy Sawel set up on behalf of all the mothers who are in despair at the shocking cruelty going on in the name of care in a so called civilised country.

MESSAGE TO SOCIAL SERVICES

You have won!  all I wanted was fairness – it would have been my daughter’s decision but she had no choice.  You have moved my daughter away but say it was my wish however she had to get away from the local area for more than one reason and you know it.  Now my daughter is disabled to the point she needs 24 hr care – the so called care she has received has led someone who once had a job, once was studying, learning to drive doing normal things to lead a live of none existence.  She is in  bed sometimes as early as 7.00 pm  I am naturally upset as you think you are truly doing the right thing by displacing me as the Nearest Relative which you have attempted on more than one occasion.  This placement has not been done fairly and you as a team have destroyed my happiness as all I wanted was for my daughter to be treated fairly.  If she had been allowed to stay at the other placement which we as a family would have paid for and did not like it and chose the other one she liked anyway that would not have been a problem but like everything that has gone on in this team everything has been controlled and Elizabeth has said “you have to go along with what the team say”  Even the solicitor was replaced –  then the comments “do you really want your mother to be the nearest relative” YOU CAN DISCREDIT ME AS MUCH AS YOU LIKE AND WHY DONT YOU DO THIS IN PUBLIC AS YOU HAVE UPSET THE FAMILY NOT JUST ME.

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The New Psychiatrist:

Actually the new psychiatrist at the private hospital is very nice this time – be bothered to ring me back – it is communication that counts with me but there are certain things that should involve the family and the family are excluded.  When I told him I had sought top expert advice from someone who really knows about the drugs and that a therapeutic dosage of this awful chemical Clozapine should be 100mg which is much lower than what this private sector hospital is giving to which he refused to listen.  A reduction to this level of course would be risky and could throw Elizabeth’s behaviour off balance but if the team think it is the right thing to do to just plod on with the current treatment of my daughter for sake of convenience this is FAR FROM CORRECT and I have supporting evidence to this that I could produce.  At the end of the day social services should not be involved in anything to do with the drugs as they know nothing about drugs.  However it is the scientists who really know the full workings of the drugs and how things should be done properly.

THAT IS WHY WE NEED A FACILITY LIKE CHY SAWEL AS NOONE SHOULD BE WRITTEN OFF LIKE RUBBISH.  NO WONDER PATIENTS GIVE UP.

I have been to the Carers UK conference and nothing has improved.  I even got up to speak and say how it felt like to be treated like nothing – like you are invisible whilst a team play on capacity and confidentiality.  Elizabeth has seen my blog and has even written her own comments on it.  I do not show her my views on drugs as this would upset her however I have shown her the amazing support she has had from complete strangers and she was so happy. 

I hope one day Elizabeth will be well enough to take over this blog and that she will help others in a similar situation but many do not have families to support them and here is a message to all the parents:

FOR THOSE PARENTS WHO THINK THE BEHAVIOUR OF THEIR SONS/DAUGHTERS IS REASON TO TURN THEIR BACKS THINK AGAIN ESPECIALLY IF THEY ARE ON ANTI-DEPRESSANTS OR MIND ALTERING DRUGS.  I WOULD RECOMMEND YOU THE BOOKS I HAE READ ESPECIALLY THAT BY DR ANN BLAKE TRACY – PROZAC PANACEA PANDORA

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