I feel positive about the New Year especially in light of how well things are going at home with Elizabeth. Today I asked her to walk on her own for a short distance up the road but she refused to go any further. Complains of dizziness which I feel is due to the drug being given at quite a high level so I am told by more than one expert.
Despite the fact the A&E and Maternity wards have been closed there is no end of money to drug people like Elizabeth and I had wrongly thought that all the extra drugs were given by the care home. I notice now that these were being given for quite some time but none of us knew the level of drugs as at Cambian she only came home with the Clozapine and Metformine which I had removed as this was being given off label and is contra indicated. Having had private tests done and looked into matters further this drug can only be prescribed off label by an endocrinologist and usually masks something wrong and the reason I took Elizabeth to see an Endocrinologist was that I suspected this fact and I was right to.
It has been six months now and no signs o any psychosis – no problems whatsoever and I do not put this down to the drug she is on at all – I put it down to the correct environment ie home Despite home and family being slated, Elizabeth has settled at home nicely and adapted to everything better than any of us expected and this is because she is happy as she keeps remarking all the time. Money is being saved to the local area as sending someone to a care home costs a lot and also private sector hospital care miles from home. There is supposed to be a budget allowed for Elizabeth’s care but she has nothing provided in six months but in a way that is good. At least no more negative things can be said and recorded in the files as I can honestly say nothing but positive remarks on how well things are working out.
The whole family can be labelled if they challenge the team. For example popular word is angry and aggressive/hostile. I object to my carers being called this – they have been very supportive of Elizabeth and helped me enormously. Obviously I am not popular from what I can see. I am so lucky to have such good friends and the immediate family who have helped enormously.
I have been taking Elizabeth to events where people get up and speak and such events are brilliant in enhancing confidence and meeting with very inspiring people. I think Elizabeth enjoys such events run by people who care about what is going on not just in the UK but abroad.
Most of my complaints looking back are about the drugs and long term drugging. It is astonishing the fact that the entire team sticks together on what is clearly wrong and when you can confirm it by evidence all I can say is they go for the easy route – ignoring damage being caused is the easy route and I wonder how they would feel if this was their relative. As much as I realise the system is to blame- a system that allows for forced drugging and restraint, CTOs and barbaric treatment there are plenty of staff that will happily go along with this. I am pleased to say though that there are exceptions such as those I have met at the ISPS conferences and INTAR conferences and these included social workers – I praise them all for their efforts as these are the people who I feel can really get heard – it is not going to me or other mothers but the professionals and patients are ignored anyway. It is a pity that politicians do not look at the situation faced by some mothers having sons and daughters on long term section. I dread to think how much this is all costing the taxpayer. So even if you are not directly affected in your family by mental health issues, what is going on has a backlash effect. In that I mean plenty of money is being wasted and it is being wasted on drugs and huge quantities of drugs that do not always work leading to hospitalisation, disablement and serious health problems leading to more drugging of a different nature and a burden to the NHS. 750mg Quetiapine – on top of this Haloperidal, Clonazepam, Lorazepam and skin medications and then paracetamol. I thought psychiatrists were aware “do no harm” – then the team do not like to alter a dosage and one drugging regime is passed on to the next team. Patients are quite often so weakened by huge levels of drugging that it is easy to control them and influence their way of thinking and psychiatry is all about control. This is a lifetime of a sentence whereas in a prison drugs are not forced and an end to the sentence is forthcoming. In psychiatry and these hospitals they are keeping patients for a very long time.
The system is wrong where in the family courts you cannot get representation unless you pay £800-£900 per month and I am pleased to see a recent case was challenged in this respect.
The combination of court proceedings re lengthy tribunals, long term hospitalisation, ill health caused by the drugs themselves and over drugging amount to a fortune that would be better spent on improving care in the community and on the wards themselves.