TELEPHONE CONVERSATION WITH ELIZABETH

I spoke to Elizabeth today who told me an advocate had been to see her. This advocate was talking about a placement that my daughter has been to see. Whilst Elizabeth liked it, she also liked another one but social services will not pay for this and it would appear that the team have come to a decision as Elizabeth told me she had not agreed and wanted to see the other placement. I have offered to pay for her stay there and social services told me to contact the placement myself. In the first instance it was Elizabeth’s wish to come home but the team do not want for Elizabeth to come home and they have said that I did not want her home but the best place really would be the farm like environment – peaceful, natural and better than a hospital or London initially after she has been in hospital for so long. There were problems before locally – unsuitable friends – Elizabeth going missing from the scheme regularly and going downhill in general. Not surprisingly, Elizabeth was on a huge amount of Quetiapine. Anyway, Elizabeth has been stable for some time but is being made to take drugs – what for? For a start I have managed to get 500mg a day taken off her drug prescription. Whilst I visited Elizabeth she mentioned she did not know the name of her GP and when I found out I took my daughter there and queried the prescription of Metformine supposedly given for weight loss but knowingly being given contra indicated. Now suddenly the GP can see no reason why this drug is being prescribed. As regards the Clozapine at 350mg a day I am quite right to be concerned to query all the medication bearing in mind lack of communication whereby files were not sent on from the hospital of full details of the reasons for the Metformine not given. I have seen this kind of thing before where a GP will prescribe one lot of drugs and the hospital the rest and what about my daughter’s physical health – who cares about this but I found out that the drugs are contra indicated and I have quite rightly challenged things.

I have recently been told of the fact that 350 mg of Clozapine is a higher than necessary dose for the management of psychosis in most cases. 100mg of clozapine is recognised to be an effective therapeutic dose So the dose of Clozapine is too high. 100mg should be sufficient to manage a patient, even those who had manifested florid and extremely aggressive behaviour. 350mg and above may be appropriate to address acute and florid symptoms on admission, to be titrated down to the minimum therapeutic dose after the symptoms had subsided. It is laughable that everything in medical intervention is supposed to be measured by the risk / benefit equation – what about the risk to my daughter’s physical health.

Plasma levels are not the same as dose. The 0.35 mentioned here is not 0.35 mg of Clozapine but the measure of serum concentration of clozapine metabolites after its pass through the liver and metabolisation by the P450 cytochromes. There is no accurate determinant of how much the patient may have to take to achieve serum levels of 0.35 and it would vary from patient to patient depending on how they as individuals metabolise the drug. This is a very complex process and is not fully understood. With 50 active cytochromes in each patient all working at different levels of effectiveness it is impossible to be able to fully understand the process except in general terms, in reality every patient is unique. Unfortunately the care does not take that into account all too often as I have seen.

Significant numbers of patients are non-metabolisers or poor metabolisers. That will cause wide variations in the effective dose of many drugs and some will not work at all.

There are many cases where psychosis is caused by endocrine problems. It is very common and history’s most famous patient George III was one of them (Porphyria). A defective thyroid and hypothalamus can manifest themselves in psychosis and the brain itself is a part of the endocrine system. Many patients would benefit from a trip to an endocrinologist. For instance in the case where someone had major surgery on her thyroid – damage had been done to the thymus, the psychiatrist failed to take account of the endocrine disorder before commencing treatment When treated with drugs for the endocrine deficiencies she recovered fully. (those drugs also have side effects of course).

An expert I am in touch with has observed the mechanism by which PTSD might manifest itself (mimic) long term acute psychosis that is mistaken for conditions such as schizophrenia or bipolar. Autoimmune function can be seriously disturbed by shock and many people who have been exposed to PTSD inducing experiences develop autoimmune disorders.

Selyes General Adapational Syndrome is an extreme example of this caused by excessive stress response releasing glucocorticoid hormones which act on the immune sytsem. This can affect white cell count and block lymphocytes in the thymus. The thymus shrinks in animals subjected to severe stress.

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

The thymus is very much associated with conditions which mimic full blown psychotic illness and if 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.

It is certainly well documented that those with damaged thyroid or thymus manifest psychotic symptoms that respond quickly to endocrine rather than psychiatric treatment.

With all these facts next week I shall be on the phone to both the private sector hospital who are drugging my daughter with a higher than necessary dosage of Clozapine which she did not wish to be on in the first place and the GP who will tell me if my daughter has diabetes or anything physically wrong. If I find out there is something physically wrong then this would explain all along the way I have been treated and why the team were desperate I did not see the files despite having consent prior to admission. My daughter has been on this dosage of drugs for the past few years now – this was the prescription of the Bethlem and all that fuss when the team thought I had missed one tablet of Metformine – now thank goodness I have consent to deal with the GP and sort this out as my daughter is being unnecessarily drugged without any thought for her physical health. What is more with the wonderful advice I have had and further knowledge gained through reading books etc I shall without doubt want further tests done at the Bio Lab and will take my daughter to see more than one expert in the field of PTSD and as recommended, an endocrinologist. I have always doubted the diagnosis as my daughter suffered extreme illness as a child through asthma and was in and out of hospital and still to this day no one has given a copy of the report by the independent doctor. Why should a hospital continue to drug my daughter if the diagnosis is wrong and it is certainly worth looking into that is for sure and this shows that everyone should be observant – in many cases of so called mental illness there could be underlying health problems which have not been properly investigated.

Anyway I am also determined that Elizabeth is treated fairly by social services. It is all down to money apparently why she is not being allowed to stay at the placement she really liked – this is totally unfair and they have made it clear that they (the team) would not wish for Elizabeth to come home and that is because of me. They use the excuse I will get her off the drugs or persuade her to stop taking them but this could be risky for Elizabeth’s health. They just use this as an excuse time after time again when all along my daughter’s life is at risk whilst she is being drugged wrongly. Elizabeth would be better off in a farm environment in peaceful countryside but the placement the team want her to go to is a residential care home. The team know nothing about the drugs – how come after all this time my daughter has been drugged wrongly and all the time she could have underlying health problems which have not been properly investigated. The team should recognise even if they do not like me that I as a mother am looking at risk – risk to my daughter’s health and this is something that is not even thought about at Tribunal level. Risk is only – risk to the public or risk to herself never is risk looked at in terms of incorrect treatment.

Elizabeth wants to see the family and I last went down in January but it is difficult to go down every month – it is expensive having to book into places and the travelling there and back – there is no help whatsoever financially if they move someone miles from home. A hospital environment can still be very stressful whether private or public but the countryside surrounding the hospital is beautiful – the farm where we stay regularly is a place where Elizabeth could get better but I would still have her home however last time there was no support as regards activities or direct payments forthcoming. If they had given a little direct payments this would have been the cheaper option.

Elizabeth would now need 24 hr care. Without a job I would not be able to see her. There is no information, no one telephones to let you know what is going on half the time and I have been trying to speak to the consultant psychiatrist about my daughter. As long as Elizabeth is taking her drugs the team are happy no matter whether this is wrong.

It is shameful what is going on and I have had letters from people via my website who have had terrible experiences not only with the care but with social services. Psychiatrists seem to be a law unto themselves and there does not seem to be observation as to what they are doing – same with social services who should never have got involved in trying to persuade my daughter to take Clozapine.

The worst thing is someone vulnerable like my daughter does not have fair representation when advocates are Government funded, some have psychiatrists on their Board and then a solicitor is doing nothing. This is typical in more than one case from what I have seen. Replacement of Nearest Relatives is rife – it is not just me affected.

Yesterday I went to a nice meal to do with work and today I spent a day at work. So tomorrow will be a quiet day thank goodness.

The other thing I am trying to do is help with the Chy Sawel meeting due to take place on 4 March. I am looking forward to this – we will discuss the business plan amongst other things and I hope that the next meeting will include Mr Burstow, Mr Lamb – the situation is urgent now as we have sons/daughters who need the right kind of care and this is not being provided in the UK. This centre would offer specialist assessments and the emphasis will be on nutrition – this is the care we as mothers want and minimal drugs. It is not impossible and there is the expertise to take someone off the drugs especially if they have been misdiagnosed or suffering from serious health problems. With the help of Dr Walsh who wants 20 doctors to train up, I feel there is hope for my daughter and I thoroughly agree with his book Nutrient Power.

Here are some recommended books that I intend to buy.

Grace Jackson’s book “Rethinking Psychiatric Drugs”

“The Sickening Mind” by Paul Martin. It covers in detail the effects of stress on the Brain and immune system and gives a detailed account of the effete of PTSD on the mind and body. It is quite an old book published in 1997 by Harper Collins but it is very informative. David Healy’s Images of Trauma is also recommended.

Mr Burstow already has the book called Nutrient Power by Dr Walsh and next time I have a meeting I will bring further facts for him to study. Hopefully once we have agreed the business plan of Chy Sawel then we can have another meeting as the sooner something is done the better – David Cameron said that money was no object so I read in the papers recently and the flood victims deserve this however it would not cost anywhere near as much to set Chy Sawel up and he should hear from not just me but all the other mothers and former patients as well. For this I would hope that a meeting room can be provided where they themselves can attend.

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2 comments
  1. If Elizabeth has been Sectioned under a section 3 she is legally entitled to 117 aftercare. Meaning the health CCG and social services have to fund her care.
    I would suggest a solicitor in mental health might be able to help.
    I was able to secure 117 aftercare funding and despite a battle we managed to get me home. I hope for Elizabeth’s and your sake you can make things happen to move her either home or to a place she is happy with the law says she must be cared for in the least restrictive environment possible.
    Good luck.

    • sbev2013 said:

      My daughter Elizabeth is being sent to a placement a fair distance from home in a care home and she did say she liked it but I do not feel she was given choice and it is virtually impossible to find a solicitor now. They wont take on cases – at present she may just as well be on her own with the level of support she has and I have noticed how advocates are funded by the hospital and solicitors are recommended by the hospital and then it is recommended that my daughter gets rid of me as the nearest relative – the legal profession is failing to protect someone vulnerable like my daughter and that is very bad. When someone is on a lot of drugs they need support and if she was to come home you get no support as I experienced once before. What would she do all day long – if I was to give up work then what. I could have someone live in to look after her but they have deprived direct payments in the past which could have provided what was needed most. They deprived direct payments because my daughter did not ask and has been so weakened she is not capable to standing up to a team who are guiding her with every decision. A team who have almost destroyed my family. What is needed is open dialogue and family inclusion. I am not the only one challenging a system that is badly in need of complete change and is inhumane and cruel. Also the drugging. I am not in favour of enforced drugging and have been accused of the presumption I will take her off the drugs yet this would be life threatening. Myself and other mothers are meeting soon in the hope of setting something unique up that is not all about enforced drugging and cruel treatment in the name of care. I do thank you for your advice. My daughter did not say she disliked the placement although she only stayed there a couple of nights and if she was unhappy there she could come home however I want a complete review of her treatment especially in light of the Metformine prescribed by the GP.

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