Two pieces of news: one good; one sad.
The good news is that my latest book has been published and is now available to buy in paperback and e-book versions.
The book is a diary of Steven’s and my life during 2016 and getting it published feels like the end of a long chapter. Since Steven’s move to his new house last October, our lives have changed considerably and I get the feeling I won’t be writing so much about our experiences in the future. Driven by Steven, we’re going through a very positive separation where we are both building new lives for ourselves. The book could well turn out to be the concluding part of an adventure that started 22 years ago.
The sad news is that thanks to the help of Miguel, one of the followers of this blog, I have found Uncle Frank. As I suspected he ended up in an institution, in his case, the Derby Lunatic Asylum. He was admitted in 1955, which ties in with the time he disappeared from the electoral register in Southall and he died in early 1957.
A strange quirk of fate ties the two stories together. Next Thursday I will be travelling up to Derby to speak at a Best Interests Assessors training event on Friday. This is the gig where the other speaker is Justice Peter Jackson. Even though I’ve done this talk over 100 times now, I’m getting increasingly nervous and emotional as the big day approaches. I’m hoping I get my copies of the new book delivered before I travel because I would love to give a copy to the man who saved Steven’s life. Also, as I’m in Derby, it would be nice to find Uncle Frank’s grave, although i suspect that is going to be difficult to discover. If I do find it, it would be nice to leave a copy of the book there too – just to let Uncle Frank know that the life of someone with a learning disability is very different 60 years after his death.
But perhaps it’s not. If Justice Peter Jackson hadn’t intervened, Steven would now be in that hospital in Wales and in terms of physical and emotional distance from family, there isn’t much difference between Derby and Wales.
1957 to 2017. What’s in 60 years?
How does one accurately, honestly and engagingly describe what life is like within the adult social care system? That is the conundrum I’ve been wrestling with the past couple of days. How can one narrate the daily grind of the system without the reader switching off in boredom?
I got some feedback from the publishing company who approached me, expressing their interest in my new book. They have decided not to offer me a deal and one of the reasons is “the level of detail currently written”. It’s a fair point. Obviously, when you write a book you want people to read it and you don’t want the reader to discard the book 20 pages in because the content is such a slog. The trick is (and I haven’t discovered the way of executing the trick yet) to present the slog of your life in a way that doesn’t become a slog to read.
Having been turned down by the publishing house, it is back to Plan A of self publishing and yesterday I was setting up the basic details (book size, format, description etc) on the publishing site. The book has been through five drafts so far and I have been surprisingly ruthless with each draft. For draft two, I culled nearly 50 pages from the original manuscript. Each subsequent draft has seen similar shrinkage but when I created the A5 book size PDF yesterday, it still came out as 394 pages! It’s certainly not 394 pages of relentless whining but I have tried to portray the grind in a way that shows how it affects the act of living. Here is a typical, three sentence entry from May 2016:
“Steven is in the living room having a meltdown because he wants me to participate in his commentary of Grease. I’m in the bedroom trying to get on with the monthly personal budget audit which is due on Monday. The poor support worker is on sentry duty in the hall, trying to keep the peace but it’s pointless, because with the noise and my tears, I’m not going to get this job done”.
It’s honest but how many times would a reader want to read a paragraph like that. As Paul Heaton sang, “This is my life and this is how it reads” but what if the repetition of your life stops people reading?
Most of the discourse about social care these days puts the problems squarely at the door of the person requiring services. “Bed blockers” is now a common term to shift attention away from chronic under funding. How often does discussion of assessment and treatment units get shut down by dropping in the phrase, “complex needs”? Justification achieved and conversation ended in just two words. One thing that I hope comes across in everything I write is that Steven isn’t the problem. He isn’t the cause of my grind. Perhaps, rather pompously, I wanted to present an extended piece that makes this point loud and clear. With all the funny bits of our life in as well.
Bollocks! I know who will read the book. I’m not going to convert anybody. I’m sure most people will skip three pages of intense analysis of personalisation to get to a piece about Steven musing over Simon Le fucking Bon. That’s my audience. I can hear them in the Newport Pagnellshire book club: “Yes, a very interesting argument about the problems of the social care Panel but wasn’t that story about Steven’s crush on Sybil Fawlty a hoot”.
Writing my blog as my own personal therapy tool. I think I’m just going to press that key marked “publish”.
Last year I met the artist, Mary O’Toole. We had conversed before on social media but this was the first time we’d met face to face. Mary had just heard me tell the Get Steven Home story and she mentioned that she wanted to do some cartoons of the story. I was honoured. But it was her comment as we parted that I’ve not been able to get out of my head – “Stories of our family’s history of learning disability are really important”.
It brought back to the surface a cryptic comment made by a cousin, himself disabled, at a family funeral, 20 years ago. He was running through a list of my father’s siblings, all dead, and he mentioned a name I’d never heard before. I knew of the brothers and sisters who were before my time. Uncle Reg, the war hero, who survived the war but died at the age of 40 in 1952. I had seen my Dad’s collection of Reg’s war medals. I knew about Auntie Eileen who emigrated to Canada in 1949. One Christmas she sent me a box of 200 crayons, all different shades. I knew about Uncle Stanley, my Dad’s best man at his wedding who emigrated to Australia in 1956. I’d seen his picture in the wedding album and I liked his face. It was a warm and strong face. My Dad’s other sisters; Aunties Phyllis, Binnie and Eve were there throughout my childhood and we’re part of a rich tapestry. Auntie Phyl’s husband owned a toy shop in Southall and I would always get a discount with my pocket money. Auntie Eve’s husband, Uncle Tom, built an incredible model village in his back garden and I went to play there most Sundays.
But I knew nothing about the eighth name, Uncle Frank. There was something in my cousin’s comment that suggested either learning disability or mental illness. My cousin, who is deaf and 90% dumb doesn’t see himself as disabled but I got the impression that he saw Uncle Frank as “not quite right”.
When I set out researching my family roots three months ago, discovering more about Uncle Frank was one of my main goals. With Mary’s words as a soundtrack, I wanted to honour this man by at least including him in the roll call with his seven siblings. And trying to understand why nobody in the family ever talked about him. In the last three months, I’ve unearthed some wonderful family stuff going back six generations but precious little about Uncle Frank.
He definitely existed. He was born in 1917, the fifth child to my nan and grandad. My Dad, the youngest and probably an afterthought didnt come along until 1927, ten years later. Frank appears on the electoral register when he turned 21 and stays there, living with my grandparents until 1956. At the age of 39 he disappears and the trail has gone cold.
It has certainly left me with lots of questions. I keep looking at the group photo in my parent’s wedding album. By process of elimination, I’m guessing Uncle Frank is the chap kneeling in the front row, slightly apart from the row of younger boys to his right. Is that telling that he is with the kids? After all, he would have been 36 at the time. I stare at his face, looking for signs of a learning disability. He has a look of George Formby about him. Then I notice the solid Uncle Stanley kneeling next to him with his hand, gently on Frank’s shoulder. And then I remember all the photos of me and Steven in company and my hand on his shoulder, silently restraining but reassuring him. Then again, I could be making this all up.
Why was he not spoken of? A few weeks back, I heard a lovely story about my parents. Probably around the time Uncle Frank disappeared, there was another big family event. My two deaf and dumb cousin’s were due to start school. Their parents and wider family had accepted the professional view that they had to be sent to a boarding school in Margate for the whole of their childhood. My mum and dad, in an attempt to convince the family there was an alternative, enrolled for evening classes in sign language. It didn’t stop my cousin’s being sent to Margate but it meant my parents were able to communicate with my cousin’s in a way the rest of the family couldn’t. My Dad even found Phillip his first job when he returned home from Margate 10 years later. So, it begs the question for me, why, if my parents had such empathy for my cousin’s, why did they never talk about Uncle Frank?
By 1956, all Uncle Frank’s siblings had left home and he was still there with my grandparents. My grandfather was 77 and three years away from death. Could they no longer cope with a disabled son and was he sent away to an institution? If he was, I find it so sad that he may have been lost forever. He must be dead by now; it’s 100 years since he was born. He may have died back in 1956 but why can’t I find any record of his death? If he was institutionalised, where was it? Did my family visit him? Would his death in an institution have been noticed?
After all this, he may not even have had a learning disability. But I’m sure he did. I want to be able to finish this story. For me. For Steven. For Uncle Frank.
Steven had a bit of a shock last night at the Mencap Pool. There was a first timer there; a guy probably a few years younger than him with a carer.
Steven can be thoroughly ruthless with other learning disabled people – they almost become invisible to him. But he is very interested in the carers.
So he swam over to the new chap’s carer and did his usual; “Hello man. What’s your name man?”
The carer replied: “Oh come on Steven. You know my name. You know who I am”.
Steven got right up close to the chap’s face before delightedly exclaiming: “It’s John from M”.
It was one of the guys who used to work at the respite place Steven went to for about a year. The place that Steven has been too scared to go back to since he was released from his detention. It’s the place where he went for one night in 2009 before Whistler’s Mother dragged him off to the Positive Behaviour Unit.
When Steven was telling me about the encounter he became concerned for the young lad who was there with John. Let’s call him Alfie.
“Alfie will be going to M House for a long time. Alfie can’t go to his Mum and Dad’s house for a massive long time. Alfie will be sad”.
Steven has obviously got it into his head that anyone who goes to the respite place are automatically on a conveyor belt to the positive behaviour unit.
Who knows? He may be right. Since 2010, I’ve met several people locally for whom the care pathways in Hillingdon are absolutely terrifying.
I’ve been feeling confused. Perhaps you can help me with my confusion?
The 7 Days of Action campaign is being wound up, to be relaunched as something with a different tone and, hopefully, a wider reach. The original campaign had become too associated with me and the original seven families and unintentionally was in danger of becoming too self feeding and keeping others out. I’ve spent a lot of time lately looking at what worked and what didn’t work. The feedback I’ve received suggests that in attempting to present very human stories about peoples’ lives in ATUs became the campaign’s greatest strength but it’s greatest weakness at the same time. The same thing that engaged many, also turned off many. One of my disappointments was that we didn’t engage enough people within the professional front line of the social care system. I’m not talking about the academics, the writers or the researchers who all had a strong presence. I’m thinking about the social workers, the best interest assessors, the people who make the decisions and the people who work in the Units. Some got involved big time but the number of retweets, for example, from those groups was very small.
This blog is coming up for its fifth birthday. I had two reasons for starting it back in 2012. Firstly, I like writing and I realised that by being named in our court case, a space had been created to indulge my love for writing. Completely selfish motive. But secondly, the one thing I’ve never been able to reconcile about Steven’s unlawful detention (and I’ve had enough therapy in the past six years to try and get a handle on it) is the way Hillingdon turned Steven into a non human. At best, they made him an object. At worst, they made him an animal. As that is the person I love with all my heart, I’ve never got over the sadness and injustice of that. So my second motive was to redress the balance and relentlessly tell the normal, everyday stories of our lives.
I guess I approached the 7 Days of Action stories in the same way. I wanted the humaness of the seven dudes to come alive in a way that would prevent the reader from “othering” them. I didn’t want the dudes to be seen as case studies but as normal human beings caught up in unspeakable situations. And perhaps that was the problem of the non engagement of the professionals with the campaign.
Of course, the main reason may have been that we adopted a completely arse about face way of going about it. Not a day goes by without me seeing a call out by some professional group in social care for the input of “experts by experience”. Co-production, working parties, vanguard’s all calling for service users and their families to enter the professionals’ world and share their experience. With the campaign, we were doing the opposite and saying, “Come into our world. Come and co-produce with us”. I suspect that may have been a bridge too far.
Perhaps it was the tone. Someone told me that the campaign “exploded like a ball of fury”. Did it? I didn’t see it that way but if it did, perhaps it scared people off. The fury may have alienated the people we need to bring about change.
One thing that did strike me was the little Stories impacted as much as the big stories: there wasn’t much differentiation. Once you get the human in the stories, it doesn’t matter whether it’s a story about someone in an isolation cell & being fed through a hatch and a story about someone being prevented from watching their Fawlty Towers DVD. I experienced this within me during the campaign. When I watched the campaign film, Stuck In The System, I watched horrific stories of prone restraint, over medication, even death. But the thing that had me howling like a baby was the throwaway line from one mother that it would be “lovely” if her detained son could “just pop in for a cup of tea”.
I think what I’m saying is that whatever the story, it was asking people to take some sort of ownership for the part they are playing in the horror. It’s a big ask. I think it’s too much of an ask. I’m not interested in blame at all. That gets us nowhere. But I guess, if you work in the system and something you have done may be a reason why that dude can’t pop home for a cup of tea, that becomes too difficult to engage with. Only human stories can bring about an engagement but the more human they get, the more they run the risk of complete disengagement.
Yesterday, I was waiting at the bus stop as all these thoughts and questions were running round my brain. Who should drive past but the manager of the Unit where Steven was held for a year. I used to like him. I could imagine him being the sort of person I’d like to go out for a drink with. But back then, I started to see his weakness. I understand that perfectly human weakness but it was a weakness that was going to result in my son being sent 300 miles away for the rest of his life. I used to have a fantasy that I would take the manager out for a drink and get answers to all the questions I have; “Why did you let it happen?” “Why didn’t you speak up?” That fantasy died a long time ago because I can see that the sub text to those questions is, “Why, as a man, as a human being did you sell yourself out?” And that is a grossly unfair question to ask anyone, no matter how truthful it is.
I think that’s what happened with the campaign. The little Stories in Little places, inadvertently exposed that truth.
There’s been a couple of interesting reports in the past couple of days – both concerning money.
Firstly, Community Care reported that Northamptonshire Council have shelved their plans to charge people to have a care assessment. (http://www.communitycare.co.uk/2017/01/30/council-shelves-unlawful-plans-charge-social-care-assessments/)
Then I saw on twitter that there have been suggestions by providers of care homes (i.e. the managing authority) to charge the people being detained for their DoLS assessment at £250 a time. (http://www.communitycare.co.uk/2017/02/02/care-home-charges-residents-dols-authorisations/)
In the first case, the council spokesperson goes to lengths to reassure readers that the charge would only have applied to self funders. But that misses the point surely? What about the Care Act and the right to an assessment of needs? I listened to a programme on Radio 4 the other day which featured to senior officials from two major care companies. The first took mainly self funders; the second relied (about 80%) on their funding from the LAs and CCGs. There was a slight suggestion (although it wasn’t developed) that the self funders are extremely attractive to care companies because they can carry the burden of the costs. Once you have that mindset, that self funders are lucrative cash cows, it doesn’t take too much imagination to see how a charging policy for an assessment would have the money men drooling.
In the second case, I cannot seriously believe that anyone in the care provider board really think charging a resident to be detained is a cool idea. A decent chunk of people who would fall under the DoLS scheme won’t want to be living where they are detained but will now be expected to pay for that privilege. Least we forget, the “S” is DoLS stands for safeguards. It turns the spirit of the Mental Capacity Act on his head that rather than safeguard that fall within its scope, the safeguards can now be used to rip people off. And what happens if you don’t want to pay? Will the managing authority ignore the DoLS process and detain the person unlawfully?
There are precedents for this in the care world. Steven has to pay the Office of the Public Guardian £350 per year for the pleasure of having me as his financial deputy. I’ve mentioned before that I’ve worked out if I spend none of Steven’s savings, in six years time they will all be gone, eaten up by the OPG.
A few years back, I did a FOI about carers assessments. I know that some LAs are charging for a carers assessment. In my local authority, in the year the FOI request covered, they carried out 1121 carers assessments. Of that 1121, only 8 produced anything for the carer. If all those 1121 people got charged for their assessment, that’s quite a tidy income for the council.
It’s the double standards that astound me. The State goes to extraordinary lengths trying to prevent people from getting something to which they are entitled. Twitter is awash daily with tales of parents having to fight long and bruising battles over SEND issues. Expensive lawyers are hired to stop the LA having to provide special educational needs provision. I’ll never forget my housing benefit appeal and turning up for the tribunal to discover that the LA had engaged an expert housing barrister to represent them. At the second hearing, the judge found that the LA had acted unlawfully. Whatever they saved by not paying my benefit would have been cancelled out several times over by the legal fees. And the biggest areas of this horrid mismatch happens at inquests. The family of the bereaved can seldom get legal representation via legal aid but the State bodies can spend an absolute fortune of taxpayer’s money on defending their reputation.
LAs will try and rinse their clients off every which way these days. When Steven was in the ATU, I kept receiving invoices charging him £118 per week for his stay there. I wrote last year that the council has a policy to “reset” disability expenditure to zero every year when calculating the financial assessment and subsequently send out out a bill of charges towards the personal budget. You could easily miss that your expenditure has been ignored and start paying a contribution that you don’t need to make. When Steven moved last year, I discovered the LA does exactly the same thing with their council tax. Each year, or each change of address, the LA removes the disability marker from the council tax resulting in the disabled person receiving a full charge.
Every single example I have raised in this post has come about because of a conscious decision by a council committee. A group of men and women, with their integrity left outside the door, have sat around a committee table and discussed how best to rip their most vulnerable clients off in a way that won’t be found out or in a way that makes legal challenge virtually impossible.
I had an astonishing conversation with Steven’s psychiatrist on Tuesday.
It was Steven’s six monthly check up. I haven’t been to any of the appointments for ages. I had that awful experience at the mental capacity assessment in 2010 when the psychiatrist threw me out of the room. Although he retired a couple of years ago, I’ve left the support workers to go with Steven to the appointments. Mainly because the appointments have been so facile – ten minutes of ticking boxes about his appearance, his sleeping, his appetite and his behaviour.
On Tuesday, Steven got up late and the support worker phoned me to say that Steven was refusing to go. I phoned the clinic and the secretary said she would get the doctor to phone me at the appointment time.
It was a new doctor. Since the old chap retired, Steven has seen a different doctor at each appointment. That immediately starts things off on a stressful foot because we are unable to prepare him for who he is going to see. This time it was a female doctor and we went through the usual questions. However, her responses were nothing like what I’ve experienced before.
She asked me about his behaviour since stopping the anti-psychotics last July. I said that his meltdowns have been exactly the same. They were the same pre-medication, during medication and the same post medication. The tablets have made no difference at all – that is autism. She said, “That’s interesting Mr Neary. We need to know and learn from this information”. I was stunned. Never before has a psychiatrist said to me that they might be able to learn something from the information I was giving them about Steven’s reaction to medication.
Then we discussed Steven’s weight loss. The support worker weighed him at last week’s swimming and he has lost just under 11 stone. The psychiatrist said, “That’s incredible. And more important data of us”. She didn’t ask me about diet. She believed what I was telling her. I can’t begin to describe what a breath of fresh air that felt like.
We discussed the change in Steven’s sleeping pattern and she asked whether I thought it might be worthwhile prescribing some sleeping tablets. I said that the number of hours he sleeps hasn’t changed; it’s just that he sleeps later and wakes later. That doesn’t seem to me to be a good reason to introduce another tablet that could play havoc with his chemistry. And why would we be doing it? – for our convenience, not Steven’s. She agreed with me.
Finally, she mentioned about arranging Steven’s next blood test. I told her that last time, I was able to arrange for one of the male GPs at our surgery to take the blood as Steven finds waiting (potentially hours) in the blood clinic at the hospital very anxiety provoking. I asked her whether she could include in her report to the GP, a request that the blood test takes place there. And she replied, “Of course. That’s just the sort of reasonable adjustment we should be making”. I laughed. She asked me why I was laughing and I told her that she was the first person in ten years of Steven attending that clinic who had used the phrase “reasonable adjustments” to me. She just got it.
None of what I’ve written about is rocket since. What I asked for is not asking for the world. It doesn’t put people out and makes for a far less stressed Steven. And for once, I spoke to a psychiatrist who got it exactly spot on.