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.