As always I have been extremely busy over the weekend.
I attended the book launch of Bonnie Burstow’s wonderful new book called “Psychiatry and the Business of Madness” – I did not expect to be beckoned to speak myself at this event but in the end could not resist! Actually that is far from true. Writing is one thing but speaking in front of people is another and I had nothing prepared so I just focussed on as much as possible but I was happy not to be in the limelight for very long. I think I spoke about the amount of drugs given to Elizabeth and how they did not work and also about the ordeal we have been through with Court – it was a shame I did not have Elizabeth present on this occasion but one of my carers was with her that evening .
On Saturday I had a wonderful time with former school friends, one of whom has moved out away from my local area into a more rural location and we saw a show at the local theatre and walked from her house to the theatre and country town. We are planning another day out very soon and a river trip to a nearby town. Elizabeth has known my friends since she was very young as we all used to meet up regularly and go down to the coast – a whole crowd of us but with everything that has gone wrong – I could not take part much in social events but now Elizabeth is back it is time to resume all of this and good to encourage her to get out and meet people and going out with a crowd is great fun. We have set aside two weekends in the hope that the weather is fine.
We have appointments coming up to see the Neurologist but I am not sure whether to yet again cancel this as Elizabeth flatly refused to go under the scanner and now I need to take her to a hospital where they have a larger scanner. In fact I must phone the GP this week. There is more than one thing I need to discuss – this appointment for one and also the referrals to the leading experts for the other diagnoses mentioned in the files. If someone has more than one diagnosis it makes sense to me that each and every single diagnosis is thoroughly checked out by leading experts who specialise in these fields and I have looked into this thoroughly and have suggested that Elizabeth is referred to one of the leading experts in PTSD as there is a strong probability Elizabeth has this diagnosis and nothing should be ruled out. There must be no doubts about her diagnosis in my opinion otherwise the treatment may be doing more harm than good and this, in turn, is a complete waste of money. It is cheaper in the long run to have a proper assessment done rather than just stick with one diagnosis just for the sake of convenience. I am even more sceptical now since Elizabeth is home and feel her current diagnosis is completely wrong and as she is in the right environment (home) I have not witnessed any “symptoms” in over a year relating to the diagnosis that the team think she has – what about the other two diagnoses made by two other highly qualified professionals? These need further thorough investigations in my opinion and who better to do them than the leading experts who specialise in them.
I have had to contact world leading experts in order to get accurate scientifically backed assessments not even available in the UK. I am delighted that hopefully this will lead to accurate treatment bearing in mind decline in physical health conditions. I do not wish to see anything more done on a trial and error basis and can only accept a diagnosis with evidence. I am not only waiting to hear of the date of an appointments for all the assessments but also I am waiting to hear from various Professionals who are looking into certain other matters for me right now.
I have ordered tickets for the conference in September I saw advertised on the C.E.P. website and will be bringing Elizabeth to this. I am looking forward to meeting the Professionals who wish to see positive change, there is a fantastic line-up of wonderful professionals speaking at this event to be held at Roehampton University. http://cepuk.org/moreharmthangood/ – all consultant psychiatrists should be listening to these experts and I would like to see this event widely publicised and this Government needs to listen to these professionals as myself and all the other mothers/parents are not happy with the treatment of maximum drugs.
There is also another event I would like to go run by ISPS:
Navigating the tensions and opportunities for collaboration between lived and professional experience of psychosis.
10.00 – 4.30pm, Saturday 11 July 2015 @ Amnesty International,17-25 New Inn Yard, London, EC2A 3EA
Elizabeth will be going away on holiday shortly with the rest of the family and I have tickets for the Chilfest which I am looking forward to.
As regards holidays myself, I would not mind going to Ireland on holiday this year and am not planning to go away until later in the year. I want to see how Elizabeth is with flying – somewhere not too far away would be good at this stage as it has only been just over a year since Elizabeth has come home from the care home.