Some of you might recall that infamous line from Neary v Hillingdon (paragraph 56), that 'something or other' being in that case that his son was unlawfully detained. I have read a tremendous amount of research about carers of people with learning disabilities - often critically considering their attitudes towards risk, empowerment, and so on. Much of that research seems to take at face value that social services actually do what they say on the tin, that the values of Valuing People, Putting People First and so on are delivered upon and carers are just being awkward and obstructive to those goals. I find a lot of this research incredibly frustrating, as it seems inattentive to the realities for people grappling with the systems which are supposed to be implementing person centre care. Following up on his brilliant book Get Steven Home, Mark Neary has written a second book describing his experiences of grappling with the adult social care system in general. It covers many of the topics discussed in his excellent blog. You can purchase the book here. I'll leave it to Mark, in typically entertaining and poignant fashion, to introduce it...I wrote Get Steven Home in 2011 and the response was phenomenal. It still knocks me sideways when I hear that the book is essential reading on several social work courses. My motives at the time of writing the first book were pretty selfish; they were trying to make up for 35 years. When I started my A Levels, my plan was to go to university and study English and Politics and then hopefully get a job in journalism. Then at 16 my mother died and I told myself that my place was at home. It took three and a half decades to finally get something in print but the impact has been so rewarding.
In 2012, I started to write a blog about my experiences in the middle of the adult social care world (or as a friend put it; “on the receiving end of the social care world”). After the Neary vs Hillingdon court case in 2011, I naively expected life to be a bit easier. Sadly, the social care world is so complicated and at times, so hostile, that life is just as stressful as it ever was. I’ve come to the conclusion that social care isn’t geared at all to the people it is meant to serve; we are an annoying inconvenience. It would be just wonderful to be able to walk away from the system but having a disabled person in the family makes that impossible. Every encounter I have with social services is a massive learning experience and I hope this book includes a few tips on how to navigate the system.
Basically this book is a collection of my blog writing with some extra bits thrown in for good measure. It’s like one of those double CDs you can get with the greatest hits on side one and obscure b sides on the other side. I have made a clumsy attempt to collect the stories together under specific themes. But the over-riding theme is that the social care world is a very tough world to be part of. Caring for a disabled son is an absolute piece of piss when compared to attending multi disciplinary meetings; trying to decode the strange language endemic in the system; or having to manage a care package when all you really want to do is flop on the sofa with The Expendables. I hope there are some funny bits in the book because it is the dark side of social care that keeps me sane. I know I get angry at times, and there are some whingy parts to the book but my honest aim with the writing is to present my account of my life as a carer.
I look across at Steven sometimes, when he’s sitting on the sofa, totally engrossed in one of his many Abba DVDS and experience a strange mixture of love, pride, anger and sadness. It was the love that kept me going during 2010. I’m proud of him for surviving such an appalling experience and although there are plenty of scars, his instinct is still to trust people (I could learn a lot from him because my ability to trust professionals in his care has been severely dented). I’m proud of the way he is maturing into a good man. He pushes himself and takes on challenges that he might have shied away from before as a child. I’m angry because he’s learned in the cruellest way possible that life is unpredictable and that you can lose everything you value at the drop of a hat (or the whim of a social worker). I’m angry that after everything he’s been through, the council are still putting him through it. Despite, everything the judge said, the council still stick to their myth about who Steven is and how he functions. And I’m sad because I know what the future holds for him and it’s not good. I don’t believe I stopped Steven being whisked off to a care home in Wales; I believe I postponed it.
But he’s in a place now where people value his need for routines and although, it can be arse numbingly boring at times, it’s something we do because it helps him feel safe. And if he feels safe, he is less likely to have a meltdown.
My life has changed dramatically since 2011. Following the court judgement and the publication of the book, I suddenly found myself being invited to speak at all manner of events and conferences. I was invited to join a panel on Radio 4 to discuss the state of the care industry in the UK; I have been asked to speak at legal conferences and on an almost monthly basis now, I get to address best interests’ assessors and mental health advocates at events across the country. I was nominated for a Liberty Human Rights award and had a fabulous evening at the Royal festival Hall and met so many inspirational people. I’ve written for The Independent and for the Mind Newsletter and have guest blogged for other people’s blogs. I took part in the filming of a promotional film for the company who supplied Steven with his IMCA during the court case. And it goes on: next month I’ve been invited to join a group at the House of Lords looking into an Independent Living Act. It’s all been very exciting.
Last June, I also went out on my own with my own counselling practice. It’s funny because the court considered the adverse effect of the publicity on Steven and they did have concerns about it. I can honestly say that for Steven, there hasn’t been any negative experience arising from the press and media attention. However, I think it indirectly cause problems for me in my old workplace. I work as a counsellor and the attitude at the agency is rigidly psychodynamic – the counsellor is a blank screen and reveals nothing of themself. That was tricky as I was appearing on the front pages of the national press. Even though, I don’t think it was a problem for a single one of my clients, it caused a lot of tension with the senior managers and after 14 years, it felt like time to leave. It has definitely been for the best and I now work in the most beautiful surroundings you can imagine.
But when you’re trapped in the social care system, there is always something or other going on. As I write, Steven and I face the prospect of becoming homeless in the summer as a result of Hillingdon suddenly reinterpreting the Housing Benefit regulations and by having a very rigid housing allocation policy. It will probably all end up in court once again. I know though, that even when that is sorted, there will be another battle ahead. Steven had just been through the RAS and I suspect from a hint by the social worker that he is going to lose out big time. And as we try to get our heads round how we will manage on a much reduced support package, the next cab off the rank will be the fairer charging policy and Steven is likely to receive a heavy charge for his reduced service. It goes on and on. I know from the many comments and stories that appear on the Get Steven Home Facebook group that for most people, their biggest struggle isn’t coping with their disabled family member but with the system that presents itself as the support. Crazy world.
Back to home. My favourite times are the evenings. Apart from my late night at work on Wednesdays, each evening it is just Steven and me on our own from 6 o’clock. It’s great having the support team but it can feel intrusive at times. As I write this, Steven has been back home 838 days and I haven’t once had to deal with any behaviour that I cannot manage. In court, Hillingdon presented a picture that I was at grave risk when I’m on my own and to deal with the risk, I force feed Steven Mars bars. Now that the spotlight is off me, the whole idea is laughable. It is in the evenings that Steven does most of his talking; I think that although he is fond of his support workers, he relaxes when it is just me and him. Last night, we had a two hour Beautiful South DVD session, whilst chatting about: Gene Kelly; The things that you don’t get in Easter Eggs; his grandmother’s leg bandage; who all the members of East 17 resemble from his schooldays; how many people we know called Des; what he’s going to say when he sees his uncle next week; the problems of shitting in a ball pool; where our next door neighbour keeps his motorcycle helmet when he’s eating his Rice Krispies. All important, existential matter.
Wherever we end up in a few month’s time, these sort of conversations, that are both funny and anxiety provoking to Steven at the same time, will continue. I hear and read all the stuff on best interests and know that nights like last night are what give Steven his quality of life. And long may they continue.
Now, on with the book………………………
Personalisation Resource Allocation Systems Inclusion Choice
Transition Management Mental Capacity Circles of Support
Hubs Positive Behaviour Support Stakeholder Options Carers
Risk Assessments Fairer Charging Policy Change Champions
Deprivation of Liberty Safeguards Indicative Budgets Flexibility
Empowerment Directly Commissioned Services Best Interests
Person Centred Plans Fairer Access to Services Transformation
Continuing Care Assessments Indicative Budgets Inclusion
Hubs Personalised Services Panel Transport Access
Direct Payments Equitable Services Challenging Behaviour
Service User The Care Market START Recording Analysis
Risk Management Plans Circles of Support Best Interests
Accessing the Community Independent Living Transformers
Individual Budgets Resource Allocation Systems Choice
Core Needs Fairer Access to Services Service Brokerage
Personalisation Resource Allocation Systems Inclusion Choice
Transition Management Mental Capacity Circles of Support
Hubs Positive Behaviour Support Stakeholder Options Carers
Risk Assessments Fairer Charging Policy Change Champions
Deprivation of Liberty Safeguards Indicative Budgets Flexibility
Empowerment Directly Commissioned Services Best Interests
Person Centred Plans Fairer Access to Services Transformation
Continuing Care Assessments Indicative Budgets Inclusion
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