Christmas went well this year and it was wonderful to have Elizabeth home and not have to worry about who was going to drive there and back as in previous years and at Cambian we were really limited – 1 day and 1 night to share between all of us but now things have changed. Elizabeth is not on a section or CTO and at home with the family and doing well and she is happy and so are we all. The only thing that has spoilt Christmas for me is being so ill. I have a viral infection that has led to a cough and unfortunately this wont go. Yesterday (Boxing Day) I had a break from Elizabeth as she went to see the rest of the family and today I took her shopping in the sales. Today Elizabeth complained of feeling dizzy on the drug Clozapine and would not let go of my arm. She said she felt like she was going to fall. Every day she has to lie down after taking this drug but usually after a while she is OK but dizziness is certainly a factor with this drug and she also complained of sharp pains and headaches today. I took Elizabeth to the Neurologist just before Xmas and we have another appointment lined up. Elizabeth is being transferred to another team – I thought it was called the Enabling Team but now I am told it is the Crisis Team and they are based in the immediate area whereas the rehab team are based much further away.
Since nothing has been provided by the team I have arranged a therapist to come to the house on Monday. I was most impressed to see there was something good in the local area – a natural health centre and a few GPs seem to be involved and I like this as I thought there was nothing good – only drugging. Of course the care I wish to provide is NOT available on the NHS. What a pity but this did not surprise me as the bulk of the care has been one drug after the other and when all of these failed a transfer miles away first to the Bethlem (Bedlam) or as my daughter calls it “hell on earth” and then to Wales to Cambian and of course then the care home hundreds of miles away where there was a poor signal in the room and we could not get through on the phone. Of course once under such establishments contact with families are not always encouraged as in my case – it reminded me of a religious cult when someone is under the control of the team.
I am delighted that Elizabeth is responding well to the personal trainer and I plan to increase the sessions to twice a week. I just want Elizabeth to be able to go out on her own – she is like a prisoner of her own mind now thanks to being hospitalized for so long – it has not done her any good that is for sure. Elizabeth has made huge efforts since coming home and is getting on with everyone in the family but needs prompting with most things. I as a mother would like her to be independent – with the level of drugging going on at the care home and whilst she was away how on earth can anyone be expected to function. Well Elizabeth has asked to be reduced to a lower dosage of Clozapine as the level she is on is far too high. Clozapine is contra indicated re heart conditions and I have seen in the files (I have been going through these with Elizabeth) that something has shown up in an EEG report – well all the more reason to reduce this chemical and also the fact that sharp arm movements have been noticed when walking and the neurologist was most sympathetic to this. I have also spent £1000 on private endocrinology reports and was most disappointed to find these had not been scanned onto the GP’s computer system. Despite being so ill I went and got these and insisted that they be scanned as they are relevant too – so much for the diagnosis of “paranoid schizophrenia treatment resistant” when all along I have proven there are physical health problems and shockingly these are not being addressed and nothing is being done about the level of Clozapine. Now there is a new consultant psychiatrist I have yet to meet – Elizabeth has two diagnoses the team have ignored ie Aspergers and PTSD. I as a mother cannot ignore these and I have full reports – so unless there is scientific evidence re Schizophrenia I am afraid I cannot accept this diagnosis and treatment resistant means poor or non metabolizer. I feel that Elizabeth is not getting the correct treatment according to NICE Guidelines and the BNF does not recommend Clozapine for conditions such as TD. I hope the new consultant psychiatrist is nice but I will soon find out – Elizabeth has made more than one request to be reduced off this drug to a lower dosage – anyway I will let you know what happens in due course. I will also give you full details of my forthcoming speech alongside Elizabeth and her sister – it is only fair that they are present in case they themselves wish to join in and speak. I do not hold meeting after meeting in secret like the team – I prefer to speak openly and honestly and I will be basing my speech on evidence.
It was good recently to meet some wonderful people that I have become acquainted with via the ISPS conference and what brilliant professionals you get to meet at such events. I see they have a conference in New York – how I would love to take Elizabeth to see New York and I would also like to take her to Finland where they have open dialogue – there is no need to drug to the hilt patients like they do in the UK in the most inhumane way by forced restraint and CTOs. In Finland they have the right idea and it is no wonder in Tornio they have 95% success rate – well I want to see this for myself and take Elizabeth who spent the happiest time of her life working there once before being prescribed all these chemicals.