Normally on Bank Holiday weekends I would be planning some nice days out and things to do with Elizabeth but this weekend I will be spending mostly alone. Others are working in the family and Elizabeth is miles away so that means booking in a hotel and driving a fair distance. I am planning to go down towards the end of May but that is if the psychiatrist allows my visit and of course they can turn around and deny such contact but I wish for everyone to know that Elizabeth has been in touch with me and wishes to go to a theme park. I have received text messages from her whilst at work but no one in the team has got back to me to confirm this and I have once again written but no reply has been received. I feel sorry for Elizabeth as she will not see anyone from the family as far as I am aware and will no doubt be stuck on the ward – at weekends such as this usually there are usually staff shortages and staff are not able to take patients out – I wish I could employ someone but unfortunately Elizabeth is on a Section 3 which the team have all renewed for another six months behind my back. At a time when supposedly Elizabeth had wanted supervised phone calls I have received text after text message which I can prove. In addition she has told her sister that this is not true at all but she has also said that she feels forced and afraid to say no to the team. In fact her very words are “I will call the Police on them – you are still my Mum”. This shows how damaging things can be when a team gang up against you and someone who is very ill is pulled in two directions and the consequences on the entire family. It would appear I am not alone in being excluded with the excuse of capacity and confidentiality used by various teams so I heard at the Carers UK Conference.
Elizabeth would have enjoyed days out with me and all the nice things but to go down to Wales is not cheap and I cannot do this every week. It is lovely though to get out of London occasionaly and I find the environment much nicer than in London and people are friendly there. London is not the best of places for m y daughter to recover as she now suffers from panic attacks and anxiety.
Whilst I am obviously against the drugs – I have seen my daughter become completely disabled to the point she could no longer do basic tasks, she has been experimented on so very much and force drugged by not only the team at Cambian but Bethlem, I would not ever advise her to stop taking them as I am not qualified and coming off a drug you need specialist help and there is nothing in the UK at present. All I have done is listen to her and I have stuck up for her – to the team she is just another number but to me she is my daughter and watching her suffer with the most terrible side effects due to the drugs various doctors have pushed at her has been heartbreaking. All along she has wanted the whole family included and yet the team say otherwise. It is harmful to pull someone in two directions and to say nasty things about me behind my back and that is what has been going on and has got back to me via her sister. I have also seen the content of past files as well to see what goes on and the team are well and truly protected by the law it would seem but much money is being wasted with the legal processes being unnecessarily drawn out by the team and I am sure that the public would be very interested in and this, particularly when the NHS accident/emergency departments and maternity wards are being closed. The mental health is draining the system because at local level the care is all about drugs and very little else. The acute wards are frightening places to be and in my opinion should only be used short term. If something better was on offer like Chy Sawel then at least patients who keep returning to the ward time and time again will have some choice.
At Carers UK Conference there was overwhelming support for carers in respect of the involvement of families more and a fresh look at the issues surrounding confidentiality to include, not exclude parents. I realise in some cases this cannot be done however there are many decent parents who have not abused their sons/daughters that should be included to work closely with the team. It is damaging for a patient to be influenced against the family and to think that in some cases professionals go by notes alone which may be inaccurate from a previous team instead of meeting with that person and keeping an open mind. Obviously the professionals are mainly pro drugs and this is where I disagree and would like to see proper assessments first by Dr Walsh and then more humane care put in place with a special look at diet/nutrition/underlying health problems. There are no grounds to justify a ban or the treatment I have received because I am not someone who would attempt to take my daughter off the drugs myself as I am not qualified to do so but I do not want my daughter’s life to be halved or for her to suffer long term health problems and so this is why I wish the correct facilities to be set up in the UK to give patients choice and to respect their human rights and that is why I would like to see Chy Sawel set up/Root and Branch. There is nothing right now in the UK. Chy Sawel/Dr Walsh wish to train about 12 doctors in November and I believe that the Government should send someone along to this conference to see for themselves what they can do to help. Last time my younger daughter got up to speak and she was given the drugs age 13 which had a terrible effect on her. The drugs should not be given to children or to the elderly like my father. They should not be given at all if a proper assessment has not been carried out in my opinion.