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Monthly Archives: March 2014

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

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

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

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

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

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

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

What is Tardive Dyskinesia?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

 

   

 

 

 

 

  

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Zoladz PR1, Diamond DM.

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

 

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

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

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

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

 

 

 

 

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