Elizabeth has been at home now for 6 months . “I’m so happy to be at home, Mum”. I have introduced Elizabeth to many of my friends, some of whom she has known a long time and others who are new friends – people I admire, those who have suffered abuse and trauma. I like to call them “Survivors”. Many people offered to help me when Elizabeth wanted to be at home again after three years of “care” that I would call “imprisonment”. I would like to advise all mothers who think that the care is better elsewhere that unfortunately this is not the case and I naively thought care would be better under private sector – well I was wrong there and I have previously documented about this private sector care. However Elizabeth is on a lot less drugs than before although the Clozapine is too high and despite having previously 3 consultant psychiatrists under the Home Treatment Team noone has taken any notice of the fact that Elizabeth has stopped smoking. I read a shocking article about someone who suffered from Clozapine poisoning – well I am just a mother but I did not know about this – I knew about the cessation of the chemicals but not about stopping smoking otherwise I would have brought this to the team’s attention and constantly reminded them. With all the attention I have had recently from the Home Treatment Team I am sure I mentioned about her stopping smoking so I am amazed that this has not been dealt with before now. At the care home lots of people were smoking and so was Elizabeth – now at home there is no need for this or the Lorazepam as and when required – or the Bisoprolol beta blocker. I am delighted to tell everyone that today Elizabeth came out with me without the usual performance where she will physically make herself ill. I put this down to one of my “carers” – she has been round to the house whilst I was at work taking Elizabeth out for long walks and it has obviously done her a lot of good. I cannot thank enough the many friends who have helped and supported me over the past months to enable Elizabeth’s return to home be possible. All of my “carers” have remarked at what an improvement. It makes me think that if someone from the mental health was placed within a suitable “family” environment that they themselves could get better rather than on an acute ward which should only be used short term. Anyway everyone should be treated individually. Some may like the drugs and agree with labelling, others may not. Some may prefer an acute ward – others may prefer a therapeutic community. My point is there should be choice and there is not. Elizabeth has been left long term on such wards and this is where the investment needs to be made in the community. Something should be done about community care. It is the system that is wrong and I can say exactly where the money is being wasted that should be spent on the NHS. If private sector care is all about drugging too then this is no different. Elizabeth was not given the choice of holistic care in Wales – there needs to be choice and there is not choice in the UK as an acute ward and enforced drugging and labelling does not suit everyone. The only way for a politician really to determine what is needed is for that politician to spend a week on an acute ward – I would like to see a politician do this and then do something about the situation.
Which Government cares about MH?. Well I want to see proof – a Government who cares would offer a room to discuss the way forward with mothers, fathers and patients and the way forward in my opinion is the example of Finland – a small area of Finland called Tornio where I want to take Elizabeth to see what humane care is on offer there and Open Dialogue. Anyway I believe action speaks louder than words and am fed up with hearing comments and no action.
Today we have met with the group of survivors who have been helpful to Elizabeth – tomorrow Elizabeth can visit her grandmother in hospital. Both grandparents are in hospital right now and at least she is nearby.
I am going to take Elizabeth to see a fireworks display soon and unlike last year I am looking forward to Xmas. Times like this have been a problem when someone is hundreds of miles away and a good part of that time is spent in travelling there and back.
I have had some good news today and am so happy. I am even more happy to see the progress of my daughter who I want to see live an independent life one day and in order to regain her confidence I have appointed a personal trainer to come to the house during the week.
There are many stigma campaigns but I believe the way forward is integration and not just encouraging someone to mix in with people who have mental health problems but society as a whole as there is much ignorance. The press do not report things correctly and I would welcome anyone to meet me and to see for themselves what is really going on – I would welcome trainee nursing or psychology students to be involved as I think what better training could they have but to see the full picture and you can only do that if you personally get to know the family. “She will be happier with her own kind” – these are words from a professional. Away from MH environment it is important to note that Elizabeth has shown nothing but normal behaviour and I as a mother have read u p on the causes of psychosis and everything I have seen has been the result of the mind altering drugs. It is no wonder why this is the case as Elizabeth is “.chronic treatment resistant” which means poor metabolizer and I want something done about this situation and proper assessments given. I do not want any more of these chemicals given without proper tests done and these are being conducted in Liverpool and should be conducted nationwide . When I enquired about these tests locally I was shocked that GPs and consultant appeared not to have any knowledge about these tests. Anyway if I have to go to Liverpool again I was most impressed with the professionals I met at the INTAR Conference and the social workers there who want to see positive change. When I last enquired the Professor was out of the country and I hope is back now. The| Neurologist appointment has been made but before any drugs are given I need to check with the Professor from Liverpool as Elizabeth is a poor or non metabolizer and I need the most up to date information first and when there are so many different diagnoses in the files I need accuracy as if the wrong diagnosis and wrong treatment is given this could do more harm than good. I want the P450 liver enzyme test done and to know that my daughter is getting the correct treatment after so many different diagnoses and drugs that do not work.