Elizabeth is out at the moment with her carer. If it was not for my carers I don’t know what I’d do. Elizabeth would otherwise be stuck indoors and I would have to review everything in my life, including where I live and would have to even consider moving.
The other day, the telephone rang and Elizabeth went to answer which is something she would normally avoid doing. When someone asked for her by name she dropped the phone thinking it was social services but it was in fact just a sales call. Such is the effect caused by a team of professionals who used bullying tactics at the time when we were due to be taken to Court. Incidentally we have not been refunded the fares/expenses for the court which I think is really bad after all this time and we can all see the full extent in the files of how team members back one another no matter what and they all stick together. This experience has had a devastating effect on Elizabeth and my carers are not too happy either at the comments made. The result is that there is no trust. It is now over twenty months since Elizabeth has come home and it would just be so nice if some of the people who are helping me right now received some recognition for what they are doing voluntarily and expenses fall on me but no-one cares. Whilst the local Council wish to increase council tax/make savings by cutting back on services there is no end of money when it comes to taking people to court and all of this is decided as being in the “best interest” by certain professionals who really know little about my family. You certainly cannot go by the files as even past history is incorrect and there are plenty of errors so I can see. No change in treatment has been suggested by the consultant psychiatrist and from what I can see from the files, the main concern of all the professionals was that Elizabeth complies with the “treatment” of last resort drug Clozapine. Clozapine is supposedly a “wonder drug” for Schizophrenia in cases where other chemicals have failed but Elizabeth is also recorded as being “treatment resistant” and this means poor/non- metaboliser but what about all the other diagnoses in the files and my request assessments have been ignored. I do not have a good word to say for this drug Clozapine or any of the other drugs given. This means that treatment could be entirely inaccurate and the team are taking the easy solution by ignoring the test results from Holland and continuing with drugging for life by Clozapine. No-one in the team will take any kind of responsibililty and if you dare to dispute their decisions regarding treatment you get the kind of treatment I have previously documented. If other similar cases of wrong diagnosis are disputed these should be fully investigated and this can only be done by proper and thorough assessments like I have obtained in Holland by the world’s leading expert.
Today I had a call from someone as I had written to everyone in my local area such as the Leader of the local Council, the Director of Social Services and the Chief Executive of the MH Trust as well as my local MP who Elizabeth and I went to see not long ago and we asked to be transferred to an area where Dr Rassaque is coordinating Open Dialogue. We have met some very good professionals by attending conferences organised through ISPS and INTAR. Unfortunately I heard that Open Dialogue is apparently not being considered in my local area but in other areas I believe such as Nottingham and Liverpool things are moving forward by professionals who do listen and recognise the need for change and I am glad to see that we are not alone in waiting something better, a system of openness and honesty that does work unlike at present.
I have found wonderful care from a team of helpers, close friends and family but when someone has suffered trauma they need specialist help but who can you trust when even the art therapist likes to come up with labels. Incidentally, I am waiting for these labels to be removed from the files but I have not heard from the CEO about this yet. I think there needs to be other corrections made to the files and I need to go through them thoroughly and make a note of all of these errors but it is a question of when I can get round to doing this as I am so busy.
Elizabeth is due to undergo a review of benefits soon – I will let you all know how this goes and I have had to ask for my carers to be present at home. How can someone deal with such matters and attend meetings and deal with appointments etc when they are too afraid to leave the house alone let alone answer the phone and to overcome this and, as Dr Bob Johnson recommended in his report “intensive trauma therapy” should be given. The fact that Dr Johnson’s report has been ignored is the reason Elizabeth has not got better and suffers from Agoraphobia and relies on my carers to take her out places. As nothing has been provided for my daughter in 22 months I have been trying to find out about what is available myself. Elizabeth needs help with cooking, washing up, ironing, prompting to do things in general – she is like a prisoner of her own mind. Elizabeth finds it hard to speak to people as she has been imprisoned in coercive environments. Today, following a recent letter I’ve written, I had a call from someone wishing to investigate my concerns but I said that I can see exactly how complaints are handled and dealt with in my local area and always the answer comes back that they are “satisfied” and even excellent is a word mentioned to describe the care provided. There is no accountability as noone wishes to admit anything to be wrong or make any necessary changes.
On a brighter note I had a good weekend last weekend and went to China_Life Tea where they had New Year celebrations taking place. Elizabeth enjoyed this and the buffet and talks on teas. I have a good selection of teas at home and now have no end of healthy food as I take more notice of the labelling on products. Even in a health shop you still need to take notice. Luckily one of my carers is an expert in these matters.
Elizabeth’s Birthday was a week ago and she went to see the rest of the family and they all went out to a vegetarian restaurant in Cambridge.
As regards the future for Elizabeth it is too early to say. I would naturally like her to do something good with her life and have a job- we do not even have a care plan after all this time yet there is money in the Better Care Fund and now I have read an article in the Evening Standard about this fund but I would dispute the amount as I have seen billions mentioned nationally. There seems to be a huge discrepancy.
To place someone in care costs £60000 a year and hospitals are even more astronomic. The result is that Elizabeth is now disabled to the point of not going out like she once did, no longer able to go shopping alone or get on a bus as she once did. No longer to even walk down the road alone a short distance and I have tried to encourage her. Elizabeth has become dependant on others sadly and I do not know what any further investigation into my concerns will bring – it is action not words that are needed. I said today that the whole system needs to be changed – I believe no-one should be written off and this is where money is being wasted by writing people off and subjecting them to a lifetime of drugging and by keeping vulnerable patients incarcerated in hospitals/care facilities for years and years on end, drugging them to the hilt resulting in disablement.
It is a pity there is nothing better in the UK in terms of facilities and that is why I would like to see Chy_Sawel set up. The Chy_Sawel Conference is coming up soon and is going to be held at the grounds of Exeter Chiefs – Sandy Park Rugby Club commencing 9.00 am on Friday 13th May – Exeter, Devon. I shall soon be posting more details regarding this and the Agenda. Robert Whitaker is speaking amongst other wonderful professionals. It is natural that parents want the best in terms of humane care ie., care that is not all about forced drugging or ECT and proper assessments given with a strong emphasis on nutrition. A place that gives proper assessments and not all about drugging at extreme levels like current treatment is needed. It is no wonder beds are overflowing under the current system – it is because the treatment is WRONG!