Yesterday we went to one of the good things based in the local area (the local carers centre) which I do not have time to go to during the week when they have most of their activities but yesterday they thought of those who worked or who could not attend during the week and did a lunch and discussion, gave advice etc. I had no one to stay with Elizabeth being the weekend and had to bring her along and I was asking about something there that could benefit Elizabeth but was told there was a six month waiting list prior however they are looking into things now. Elizabeth has been back home for around 5 months now since coming home to stay from the care home and not wanting to go back. Elizabeth has made good progress at home and there has not been one sign of abnormal behaviour because she is mixing in with my close friends who have kindly come into the house every day and to begin with it was made all the more difficult with the re-titration of the drug Clozapine whereby staff were coming in to the home twice a day and reporting their findings back to certain people. Likewise my carers were reporting to me their findings but now we are left alone with no visits which is good. If someone is to lead a normal life then this should be encouraged and less restrictive. Since complaints were made to the Director of Mental Health locally the intrusive visits by the Home Treatment Team on nearly a daily basis have ceased and Elizabeth is with the community mental health team. The drugs are running out now and not one person has been in touch from this team to speak of new arrangements to collect them. It was easy before when she was under the Home Treatment Team as I could just go and pick them up on a weekly basis at the hospital on a Saturday morning. I had to wait for quite some time but at least Elizabeth did not have to wait all morning like in some cases before. Now it is left for me to telephone their office to find out where the prescription can be obtained which I will try and fit in tomorrow.
So we did not go out and do too much yesterday but we have not long got back from Leicester from the fabulous ISPS Conference where the professionals speak the truth which made a refreshing change. I have already said that the place to go for honest advice is the universities like Liverpool, Leicester, Lincoln and Nottingham. The only thing I wish is that all these experts/Professors would get together and do something to help my daughter and others given a life sentence of drugging with a label that is incorrect so therefore with misdiagnosis comes wrong treatment and that means the patient does not get better. I have already told you that even without all of this advice I was suspicious and that is because I have two in the family who are on top of the world – where did these labels come from? Well there is a book called the DSM and there are so many diagnoses in there it is laughable. I would need to see some scientific proof before I would ever accept any label myself and when top leading experts tell me there is no bio marker for Schizophrenia I cannot just dismiss such good advice. It is only when you research things thoroughly you get the full picture of what is really going on that is not documented in the press.
With wards overflowing through lack of beds everyone should be questioning mental health care as even if they are not affected then they should surely be concerned about the costs involved here for care that does not work simply because there are people who cannot metabolize the drugs and nothing is being done and others are given prescriptions of more than one drug and suffer from adverse reactions. People should question what knowledge there is in the prescribing of these drugs by some psychiatrists. People should be questioning the use of private sector care for MH patients for as long as three years especially when Elizabeth has come out of this “care” as disabled. She is now disabled to the point she will not go out anywhere alone and is petrified of going out anywhere and it takes her often the day to relax and enjoy herself at all. I was watching her at the conference and no sooner had we arrived she wanted to leave – the last conference in Liverpool INTAR she was not feeling well enough to attend any of the lectures. I had already booked these conferences before I knew Elizabeth was coming home. At the Tribunal in Wales when Elizabeth asked to come home it was simply not an option and none of them agreed to this. So it has now been 5 months at home and I have not been the one that has denied the drugs as I have been accused. It has been the team who have done this and still nothing is up and running smoothly and I am left to find out about obtaining the prescription.
Anyway it is a nice day today and I do not want to be stuck in today so we are going for a drive to Hampstead where we have been invited to visit by someone who attended the group I go to.
Close friends are back from holiday and have offered to take Elizabeth out during the week for activities and she has a personal trainer but I can only take her at weekends. There is no support from anyone else in the local area at all.
Various people are writing books, making films, organising events, speaking out about stigma an discrimination however drawing attention to things is one thing – there’s plenty of people like this but then there are those who really know about the drugs and “treatment” with up to date knowledge and they are quietly working behind the scenes. Then there are the survivors and former patients who bravely speak out and the parents who get in touch with me and we share the same experience of bad treatment ruled by a system that that is cruel and abusive.. Who really cares about these patients, if people really cared there would be a place like Earth House set up ie Chy Sawel or Soteria offering alternative care and I do not see why things should take so long especially when MH is now at crisis point and wards cannot cope – public money is being wasted whilst other services are suffering and there is no support in the community as I have documented. Open Dialogue is the way forward.