CHY SAWEL MEETING

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.

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