I can only spend weekends with my daughter Elizabeth but try to make the most of it. I try and take her out places and yesterday was a brilliant day. In the morning I had a few things to do and took Elizabeth along with me. I went to BMW for my car to be booked in. I took Elizabeth with me to the town and had various things to sort out. I then tried to help Elizabeth with budgeting which she finds impossible to do. It is all too easy to spend money in shops not realising how this can accumulate. Elizabeth has never had to manage money before – care under supported housing/living schemes do not offer the right kind of care/support to those who have been institutionalised for years such as Elizabeth in order that they can live an independent life in the community. Staff mainly would stay in their private rooms/office and not engage with residents. Elizabeth has communication difficulties in any case and can take things the wrong way. If a vulnerable person did not ask for help they would not receive it. Basics of in-house help are given, such as towards preparing and cooking meals if requested but nothing that is relevant for living in the community outside such as taking someone out shopping, helping them budget, helping them relate to other people particularly when I have been saying all along that my daughter is with the wrong team as she is autistic.
After a nice time looking round the town we drove to Barnet. The shops were closing but there was still time to take Elizabeth shopping and as I am trying to help her with budgeting I took her to Waitrose. There were so many things being sold at reduced prices and perfectly good. I helped Elizabeth select the items she wanted but because Elizabeth has once again overspent so I am having to help her out. She has generously brought presents as well as children’s items for Halloween, presents for her sister/for me and as a result she has no money.
Today I offered to take Elizabeth swimming even though I did not feel like this myself. We went swimming to a lovely pool just outside our local area. I was swimming in the lanes but noticed Elizabeth was not doing much swimming but talking to people. I had remembered to bring her water as last time she flatly refused to go in and swim without any water. I tried to explain to Elizabeth that people are there to swim not to chat and listen to the kind of talk Elizabeth can give which is quite heavy. I had to put up with listening to depressing music in the car and Elizabeth was singing along to a band called Nightwish that I had taken her to see once and nearly got arrested because we had been conned by Viagogo for last minute tickets that were not accepted at the venue. I have written all about this in a separate blog. I could see Elizabeth was not her happiest today and tried not to engage with in-depth conversation whilst we were out. So I did my 20 lengths then went in the sauna/steam whilst Elizabeth waited for me. After that Elizabeth wanted to go somewhere to get something to eat and I thought of a local sports centre nearby which I thought would be more peaceful as they have a terrace and a nice restaurant. I bought lunch but had no appetite myself as Elizabeth was clearly not happy. I decided to take her home after that – maybe she had not had a good night’s sleep – this could be a trigger point. Soon after I arrived home I received a call from paramedics who had been called out once again. I was in despair about this. I have hardly had any time to myself this weekend but still feel better than if Elizabeth was back on a ward or in a distant care home or scheme. I would rather give up what little time I have to keep Elizabeth where she is for the time being rather than her ending up in another dreadful supportive housing or living scheme or worse still a care home or hospital where they drug people like my daughter to the hilt. So I spoke to the Paramedics and explained the situation. Elizabeth already said she did not wish to go to hospital. She is not a risk to self/others but needs company or something in terms of care that is for sure.
This whole situation is getting to be a nightmare and the problem is that the community mental health team do not recognise anything other than personality disorder or schizophrenia. What is constantly being dismissed is “learning /developmental disability/Aspergers and she was told at Huntercombe Roehampton she had high spectrum Aspergers.
The paramedics and police have been marvellous in the London Borough of Enfield but the community mental health team combined with GP which is Carlton House Surgery Enfield should be referring Elizabeth for assessment for autism and placing her with a Learning Disibility/autism community team as Elizabeth says no one understands her and there clearly is no training under the MH to understand about autism/aspergers. In fact the paramedics today suggested LD/team.
Despite the fact Elizabeth can look after herself and cook and shop she needs a team who will provide something in the community in terms of support and this is where the community MH team are failing.
So I believe that there has been a recent visit by her Psychiatrist Dr IM of Enfield Community Rehab Team plus care coordinator PM. If this is true what Elizabeth told me I am saddened – medication was suggested plus going back into supportive living/housing during their visit. Also, the Crisis Team are supposed to visit regularly – they suggested going back to hospital and this is totally wrong.
Why should the above apply at all when it is quite simple what is needed and would be far less costly. Elizabeth needs a group of young friends to go out with who might be students who study psychology or nursing or even social work. I would personally pay for such a night out for everyone if they could include Elizabeth for one evening. If these young “friends” are studying to go into the profession I would like them to see at first hand how lack of care in the community is affecting someone like my daughter.
When it was suggested by Dr IM medication – the answer was clearly no.
When it was suggested by PM – care home/supported housing or living the answer was clearly no and just look at was Enfield have provided in that connection in the past.
When it was suggested to Elizabeth “do you need to go back into hospital – the answer was clearly no and Crisis Team the answer will always be NO. This same answer has been given more than one time to Police and to paramedics.
So keeping someone like my daughter who has been so dreadfully damaged by the care provided to her over a period of 14 years in dreadful institutions is perhaps all too convenient for the team but it is not the answer at all.
No way would Elizabeth have once called out ambulances and police. No way would she be so disabled as she is now had she not been prescribed so many concomitantly prescribed drugs at 2 x bnf level so it stated in the files. It is the NHS under mental health care that has dished out the apalling “treatment” resulting in such disablement. Then they palm her onto institutions such as Cygnet, Cambian, Bedlam, Huntercombe all offering enormous quantities of mind altering drugs and none of the local.
MESSAGE TO THE TEAM:
I would like my daughter assessed properly NOT BY YOUR DEPARTMENT, ENFIELD COMMUNITY REHAB, but by Specialists in LD/autism who can properly communicate with her. As nothing is being provided for Elizabeth of the correct kind of care needed ie budgeting, shopping, friendships etc according to your good care plan, the first reasonable care plan you have ever produced, then I would like Elizabeth transferred to a more appropriate team who can provide the very basics or could I have the direct payments so I can arrange myself. The right care is NOT – taking Elizabeth away from her home and dumping back into supported housing and living where a Death Plan was produced by one, cutting out her family. The right care is also not a hospital or ATU when Elizabeth can do shopping, can clean, can cook – she has qualifications in this respect. You know what help is required as identified in your care plan but you are failing to provide this. Most of all my daughter needs an assessment that is carried out completely independent of your department and can only be done by experts in the field of LD/Developmental Disbility/high spectrum aspergers. This is mentioned many many times in the files AND not forgetting the wonderful Expert Witness report for Cambian by Dr Bob Johnson. This report was deprived to Elizabeth and I got hold of a copy of it and showed it to her. It says PTSD. It recommended trauma therapy – so Enfield Community Rehab team where is the specialist treatment my daughter needs as a result of the abuse she has suffered in certain community care home provisions? Here is one of them RATED GOOD BY THE CQC PHOENIX HOUSE STEPPING STONES NORTHAMPTON “Elizabeth must manage her foods as she will be without food at the weekend.” I’ve got it all in writing and everyone’s conversation including the CQC inspector who I feel like naming right here on Twitter.
ILLEGAL DETENTION UNDER ENFIELD:
I also wish to tell everyone how Elizabeth challenged her illegal detention under ENFIELD CHASE FARM HOSPITAL SUFFOLK WARD. Elizabeth was detained 16 hrs illegally but, following the case of :
TW v LBE I was totally unaware –
To protect TrustS/lAs there has been changes in law which now makes it impossible to challenge further. Below is the example.
Elizabeth was awarded £1 compensation for 16 hours illegal detention.
The above together with lack of humane mental health care sums up the disgrace of how the most vulnerable people are being treated and abused under the UK.
I do not want Police and Paramedics further bothered by Elizabeth’s calls when Elizabeth, a product of failure under the NHS care, should be receiving a proper assessment and being transferred to a team that can at least provide something in the community the current care plan recommends. A visiting support worker who is properly trained in autism would be good, even unqualified “friends” of about her age to take her out who are studying for nursing/psychology.
To me there is nothing complex whatsoever in what is needed here. Also it is much cheaper to provide the care my daughter needs in the community than send her off to horrific “prison” environments – you have tried and failed at this so now Elizabeth needs something better provided and the kind of therapy that should be provided that worked in Scotland and Australia was psychotherapy and a perhaps EMDR should be tried.
Dr R D Laing’s colleague and former colleague told me he never ever used mind altering psychiatric drugs and that psychotherapy was all that was needed and he is absolutely right. I thoroughly agreed with him and that is why I sought the correct care that I provided privately thanks to Working to Recovery. More funding needs to be given to wonderful organisations such as this to set up therapeutic communities and recovery houses on a small scale throughout the UK.
I would commend Norway and Professor Peter Gotzsche – it is a pity the UK is so behind the times when it comes to forced treatment. Elizabeth was getting daily injections of Lorazepam on Suffolk Ward and it is no wonder she has suffered such trauma all down to an area of the NHS that is not working and could learn from Norway’s wonderful example and not forgetting Working to Recovery.
The way Elizabeth has been treated is a disgrace but the Paramedics and the Police have been wonderful in ENFIELD.