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No Neglect

Yesterday the inquest was held into the death of Stephanie Bincliffe. Stephanie was a 25 year old autistic woman who for seven years had been detained under the Mental health Act in an assessment and treatment unit run by the Huntercombe Group. For years, Stephanie had been held in a padded room with no fresh air or access to any form of exercise. Her weight had increased by 10 stone to 26 stone during her time in the Unit and she died of heart failure & sleep apnoea, both, the coroner decided as a result of her obesity.

The coroner was quite critical of the Unit for its lack of a treatment plan (!!) but at the same time ruled out neglect on the part of the care providers but also said that because of Stephanie’s challenging behaviour, any treatment plan to tackle the obesity would have been very difficult to implement.

Stephanie wasn’t neglected?

Read the press release and the heart-breaking statements from Stephanie’s family and then think again about your definition of “neglect” – http://www.challengingbehaviour.org.uk/cbf-articles/latest-news/death-of-a-young-woman-with-a.html

As usual, in these sort of inquiries there is no mention of the commissioners who sent Stephanie to her doom. They shelled out £12k a week for the “assessment & treatment” and have now got off scott free as nobody seems to be asking questions about their commissioning decisions.

At the same time, nobody seems to be asking questions about how Stephanie’s weight managed to increase so dangerously. The Unit management talked about having to balance any weight control programme versus Stephanie’s tendency to self harm around unmet food demands. What they fail to mention, and I realise I’m guessing here, is the impact a major drug programme has on someone’s weight. Once again, I’m guessing, but I bet that in order to deal with Stephanie’s “challenging behaviour”, she would have been on some serious medication. But that doesn’t warrant a mention.

And as so happens all the time, nobody is asking the question – “what the bloody hell was Stephanie doing there in the first place?” Even if someone truly believed that she needed medical intervention at some stage, seven years later, why wasn’t somebody reviewing whether the intervention she was getting was working. The trouble when someone enters an ATU is that these questions aren’t asked. The person is lost. They are forgotten. They become a cost figure in the commissioning body’s monthly outgoings.

Yesterday, I had my first overnight stay in my new flat. Shortly after arriving, I took a phone call from the producer of a radio programme. The inquest verdict hadn’t been announced at this point but he was planning to devote a large chunk of his 6 o’clock programme to Stephanie’s case. He admitted that the production team were working on the assumption that the verdict would be pretty damming and he had lined up Mencap to contribute to a discussion of the case. he wanted me in on the discussion because of Steven’s experience of an ATU. I was uneasy because Steven’s experience was nothing like Stephanie’s but I thought it might be useful to get a parent’s perspective to the wider question of Assessment & Treatment units. I agreed to be interviewed live during the programme.

At 5.55, he called me back and told me that, following the verdict, they had decided not to run the story. The verdict wasn’t particularly critical of the Unit or the “treatment”, so there wasn’t really a story. I was fucking furious – “That is your bloody story then” I despaired.

But no. Despite the thousands of questions to be asked about this case, the fact that Stephanie’s death was seen as inevitable, there became no story to tell.

And that is why Stephanie was taken to an ATU seven years ago. That is why she was allowed to be kept in a locked padded room for seven years. That is why she died.

Because there was no story. Nobody was interested. Nobody making the decisions cared.

Blurred Lines? (or Human Beings?)

This afternoon, I read a rather alarming article in Community Care magazine. The link to the full article is here: http://www.communitycare.co.uk/2014/11/19/personal-assistants-risk-abuse-poor-support/

The headline is: “Personal assistants at risk of abuse because of poor support” and goes on to discuss the “vulnerability” of a PA on the basis of their isolation at working in their client’s home. Here is a typical quote from the article to give you a flavour of the author’s position – “Their close working relationship with their  employer also meant professional boundaries could get blurred, leaving both sides more vulnerable to abuse. PAs face unique risks and challenges associated with their isolation and vulnerability, working often in people’s own homes.”

It made me wonder what the author would have made of the week I’ve just had.

All the furniture for my new flat was meant to be delivered on Wednesday. The shop gave me a very wide delivery space of between 7am and 6pm. I would have been very hard pushed to get Steven sorted and at the flat by 7am. One of the support workers finishes his Tuesday shift at 6pm and starts a Wednesday shift at 6am. On Tuesday lunchtime, he nabbed me in the kitchen and asked me whether I wanted him to stay overnight on Tuesday – “you can slip away before Steven gets up tomorrow. I’ll take charge of bath, breakfast and Mr Bean”. What an offer, which I accepted.

Before he was leaving last weekend, the Saturday worker asked me whether I needed his help with the move. He volunteered to come in on Wednesday and help with whatever needed to be done. I remembered from our move to Steven’s house last year what a dab hand he is with an electric screwdriver and took him up on his offer. I got to the flat by 6.30am and he arrived about 8am. It was 11am before the first delivery came and we spent a lovely couple of hours chatting about stuff and nonsense. Looking out of the window across the river, he told me several stories about the men back home in Nigeria who worked on water. I found it enlightening and moving. Perhaps, someone with different eyes may have seen a blurring of professional boundaries. I saw it as two human beings sharing precious stories.

This great support carried on throughout the week. Since we moved into Steven’s house, my books and DVDs have been stored away in the fitted wardrobe in my bedroom. Now I have my own space, I thought it was about time they saw the light of day. One of the other PAs asked me weeks ago what I planned to do with my collections and he offered to come in at a time Steven was out and help me move them to the flat. That scores points for me on several levels, especially that he knew Steven might be a bit spooked by me carrying some of my belongings out of the house. Although, I don’t think Steven even knew they were in the wardrobe, he would have noticed us carrying four large packing boxes down the stairs! And if that wasn’t enough, he stayed on afterwards and helped me assemble the bookshelves.

Whenever any of the PAs offer to do something that I might consider above and beyond the call of duty, they always say the same thing – “If you’re okay, then Steven is okay”. They make a big deal about me having a “rest” and are forever shovelling me up to my bedroom for a lie down. They know that Steven’s time with me is very intense -his conversation is on the go from morning to night. All of them, at one time or another has talked to me about their values and the importance they put on family. This attitude couldn’t be more different from the staff at the Unit in 2010. I couldn’t speak to any of them. They weren’t interested in anything I had to say. I always felt like a massive interference to the rigid running of their home. And, of course, they consistently held the “we know best” view. I believe that what makes the relationship with the current PAs work as well as it does is the mutual respect. Working in someone’s home is very different to working in a home. I’m not saying that you become part of the family but it engenders a very unique, close relationship. I guess the author of the report and the social care world in general is very threatened by that concept.

Boundaries have been on my mind a lot this week because I will be using the second bedroom in the flat as my counselling room. For the first time in my 16 year career, my clients will be coming into my home. I’ve had so many people issue warnings about this and announce that for them it would be a complete no-no. I don’t really share that foreboding. My relationship with my clients changed a lot in 2011. For years, I had been this fairly anonymous figure that they met once a week and then all of a sudden, after our court case, I was appearing on the front page on the national newspapers and the BBC. Since then, I sometimes get asked about Steven and occasionally get a bit of a ribbing along the lines of “Are you appearing in Hello magazine this week?” At the time, and since, I have checked out with my clients how they feel about this and the response has always been positive. It’s leavened out the power dynamic for the advantage of the clients. I was trained as a person centred counsellor and I like the idea of person centred care. But I think the people who hold the power in both professions are threatened by the model. It means letting go of the expert role and accepting that the person you are dealing with knows themselves better than anyone. A massive challenge. The people using the service become more important than the people providing the service.

Anyway, back to the PAs. Of course, I paid them for the extra work they did this week. And out of my pocket, as they were helping me, not from the personal budget. I don’t believe for one moment that money was the driver for their offers. They did it because they recognise and respect the unit that is a family. I don’t think that is making them vulnerable or crossing boundaries. I call that being human.

Littles & Bigs

When I was a kid, my Auntie Rose had a cleaning job for a local doctor, Dr Pragnell. He was our GP but he also had a very successful private practice which afforded a grand house in one of the posher parts of Southall. I used to call it the mansion. It probably wasn’t but to my 10 year old eyes it was mightily impressive. For four weeks during the summer holidays, the doctor took his family to Cowes (yes – they had a yacht) and my auntie took me with her to work. What a place! They had a gypsy caravan in the garden where I’d go to eat my wagon wheel. I used to spook myself by going into the consulting rooms with the skeletons hanging in the corner. My favourite room was the children’s playroom. It was bigger than the whole of the ground floor of my house. It had a dolls house with a roof garden and a swimming pool in it.

One day, I spotted a door at the back of the playroom. I went through it and discovered a library of solely children’s books. Thousands of them! It was here that I came across a collection of books about the Cherrys. They were derivative of the Famous Five but what marked them as different to the Blyton characters was that the grown ups got involved in the adventures too. The kids were called “The Littles” and the adults were “The Bigs”. Inevitably the Littles solved the mystery before the Bigs. I was totally inspired by the Cherrys and set up my own gang that went about solving perplexing mysteries. Once we found a box of clothing coupons from the war dumped down an alley and set out to find their owner. For our mission, we decided we needed to be in disguise. I dressed as a tramp whilst Gary Saunders wore my Auntie Hilda’s old crimplene coat and Ascot hat.

Reading through an old exercise book, I was reminded of one of our cases. My neighbour, Miss Twinnie’s budgie escaped one day and we swore to track it down. Here is my 11 year olds’ report:

” Saw Mr Hutch from the cafe. Told him to put him posters of Bluey in his window. Went to the police station and told PC Walker to have his eyes peeled. Trevor’s mum took me to the town hall to tell the Mayor but he’d gone out, so we had a sausage roll instead…….”

Reading this back, the name dropping is shameless. Shit – I was a mini Sir Stephen Bubb. Read any of his blogs and you know who he met and what he ate but precious little of what he did. His writing makes him sound 10 at times. The difference between us is that I was tasked with finding a budgie, whilst he is tasked with rescuing thousands of people from ATUs. Bubb is clearly a Big but sounds like a Little.

They’re all in it. By they, I mean all the big players in the social care world. Today in the Sunday Times (theres no point liking to it as it’s behind their paywall) there’s the dreadful story of Lisa, who was first reported in the Three Lives report, several months back. It’s an odd article because it doesnt really focus on Lisa but reads more like The Bigs, The CBF & Mencap blowing their own trumpets. Neither rescued Lisa but they’ve both got plenty to say, after the event. Like Bubb, they announce rather than do.

When I do stuff for #LBBill, I often feel like a Little. The DofH are the Bigs. I know where that comes from. After all, like Bill & Ben, I could only come out to play as a kid when the Bigs went off to Cowes. But then I remember the Cherrys and in every book, it was the Littles who got things done and solved the problem.

Polar Bares

It feels like a very strange time. I pick up the keys to the new flat on Friday. I’ve spent most of today sorting out the utilities, broadband, tv license etc. The furniture is being delivered next Wednesday and I’ve taken a week off work to get the flat straight. Emotionally, I’m swinging between excitement and a real deep sadness. The excitement is good – I’ve never lived on my own before and although it will only be a couple of nights each week, it feels like a big adventure.

The sadness is two things. It was my wife’s birthday on Monday and I’m constantly aware that none of this would be happening if it wasnt for her death. I don’t feel guilty about that. It’s more an existential ache. Steven and I marked her birthday with a music session of lots of her favourite soul songs from the 70s. That felt apt and nice. Then later, I went to the hotel where we’d shared significant times together. We spent our honeymoon night there and sat outside drinking and discussing our future life together. I did the same on Monday, except our honeymoon was in July and this is November. After half an hour my teeth were chattering and I couldnt feel my feet. And the future from 2014 felt very different to the future of 1981.

The other sadness is Steven’s future. Since getting the flat, I keep getting the same voice – “If I die tomorrow, I’ve done all I could possibly have done to secure his future”. From rescuing him from a potential life in a hospital in Wales, to the massive struggle to get a personal budget, the year long threat of homelessness, to building the great support team he has. And now the flat means that he will have his own home that he will own one day.

But I know it will probably not be enough. More than likely, within a week of my death, Steven will be institutionalised. The support staff will be dispensed with and the State will have started to sell the flat to fund his care.

I know I can be a melancholic old bastard but all those thoughts and feelings are there as I shop for pillowcases and towel racks.

Nothing is sad or happy. Everything is sad and happy.

Buffered

Regular readers of this blog will know that following my wife’s death, I have sold the old family home and am in the process of buying a flat that I will use both for my respite nights and for my counselling practice.

The good news is that I pick up the keys on Friday and the furniture will be delivered a few days later. It will be all ready for work, rest and play (Ive treated myself to a home gym) a fortnight today.

On Friday, I emailed Steven’s social worker to let her know this and to see how the revised care plan was coming along. I got a response this morning.

Panel have only agreed two nights instead of three. But weirdly, I was informed that the revised personal budget would have to be amended because “you have already received your buffer”.

What is a buffer?

Have I been buffered and not noticed?

I have no idea what this means. Then I started to put two and two together (possibly making 86). Was the ” buffer”, the extra 6 nights I was “awarded” back in May when Julie died? It was a horrible time and I was extremely grateful for the additional support. Steven was struggling with the loss. So was I. Having nearly a week of extra help was brilliant.

If I’m right and that is what the buffer was, is that right? Is it legal? I didnt actually ask for the extra support in May – the social worker offered it and I was made up by her kindness. But that a need six months ago. This is a new need that hasn’t existed until next week. Nobody ever told me about a buffer before, let alone, that the buffer could be offset against future need.

Needless to say, the tactic does the trick. I’ve been feeling guilty all day. I keep poking myself with thoughts like: “Am I being unreasonable?” “Am I being greedy?” I guess the system relies on carer’s guilt in order to bypass statutory duties. And they know they have me over a barrel. There’s no way I’m going off to the flat for a night, leaving Steven at home on his own.

Still, at least I’ve added a new phrase to my Carespeak book – the personal budget buffer.

Midnight Rave Up

Nice Twitter conversation this morning about pasting song lyrics from Smash Hits into a notebook. I used to do that and it’s sent me off down memory lane.

Woolworths used to sell a pack of 4 rough exercise books for half a crown. The one with a red cover, I used to use for my own song lyrics. When we clearing my Dad’s stuff out after he died, I found one of the red lyric rough books in his bedside drawer. He never showed much interest in my musical interests when I was growing up, so it was a shock and very moving to find he’d held on to this. The book was from around 1973, when I was convinced me and Marc Bolan were seperated at birth. For about a year, I dropped the “k” from my name and inserted a “c”. Some of the song titles are heavily influenced – ” I’m A Groovy Cat”, “The Brazen Serpent”. One title, has the rather hopeful title, coming from my 13 year old perspective, ” The Girl In My Bed Is Magnificent”. Trouble with that one was I struggled to find words to rhyme with magnificient and in one verse, twinned it with “pants”.

My favourite, and the only one I can still remember the tune to is, ” Midnight Rave Up At The Ritz”. The chorus, with blinding bewilderment goes:

“Princess Anne sure did get her kicks
” At the midnight rave up at the Ritz”.

Goodness knows where that one came from! Even in 1973, Princess Anne could never have been classified as a groovy chick.

The green rough book was the one I used to paste in song lyrics, cut lovingly from Disco 45. I found one of them when Julie died this year and we were clearing out the loft of our old family home. This one was from 1974 and by now, not only was I pasting in the lyrics but also a review of the song from Record Mirror. I also wrote my own notes, including rather obssessively, where I’d brought the record. The marvellous, long gone, Memory Discs in Hounslow showed up most regularly. I used to think it was the hippest hanging out place on earth. I was a bit thrown to find I had brought Amateur Hour by Sparks from Mr Singh’s Electrical Bazaar”. I have no recall of that place at all.

Next to Teenage Rampage by The Sweet, I’ve written in purple felt pen – “Going to ask Mum on Friday if I can have a haircut like Brian”. I like the ” on Friday” bit. This must have involved a lot of tactical planning and building up of courage. I never got a Brian Connolly haircut, so either I chickened out or Mum put her foot down.

Steven’s memories, his past, isn’t in the loft. They are all still very much part of his present. He likes his stuff around him. In the living room, we have 3 stacking boxes of his old model figures – everything from Gladiators, Toy Story, My old Camberwick Green figures, Star Wars. Everyday, when I get home from work, he has taken one figure from the box and placed it on the dining table. It’s my return home question each day. Yesterday, was one of the Star Wars figures – “Dad – who does Obi Wan Knobi look like at Mencap Pool?” I answer, (Chris) and the figure is returned to the box.

I worry for the future about the importance of Steven’s belongings to him. I can’t see anyone respecting that importance. When he was in the Unit, Steven quickly wised up to the fact that his things of value were in danger. CDs went missing from their cases. We never ever found the brown Fawlty Towers video. By his birthday, in the March, Steven opened his presents in the Unit and then made me bring them all home with me.

One final entry from the green rough book. Next to “Rock Your Baby” by George McCrae, I wrote – “This song is so flavoursome, I want to jump into Southall swimming pool with no trunks on”.

Five Go For A Bill In Whitehall

Chuffing Nora – it’s been a heck of a two days.

Yesterday, Sara, Rich, Steve, George and me went up to the Department of Health and met with two of the most senior staff there to discuss #LBBill. I’m still finding it quite un-nerving discussing the Bill. Regardless of what the other person’s agenda is, it still feels strange that what started with a Tweet, then a blog post has now made its way to Whitehall. They were very interested in the background to the Bill and asked some challenging questions about the detail of the Bill. But we held our own and all in all, I would say it was a very productive meeting.

Flushed with the success of the meeting, I rather hoisted myself with my own petard later. I got back to Uxbridge much earlier than I expected, and as it was a respite night away, I decided to jump into a black cab to take me to the hotel. As the car drove away after dropping me off, I suddenly realised I was at the wrong hotel. My fault – not the driver’s – he took me precisely where I’d asked him to take me. I then had to wait just under an hour for another cab to take me to the right hotel.

This morning saw the official launch of #LBBill. The full Bill, easy read version and explanatory notes are here:

http://lbbill.wordpress.com/2014/11/04/lbbill-draft-one-launched/

Steve has written a fabulous blog post about the Bill:

https://rightsinreality.wordpress.com/2014/11/03/lbbill-justice-for-all-the-dudes-thoughts-on-first-draft/

And like a whippet, Lucy Series has already blogged about the Bill:

http://thesmallplaces.wordpress.com/2014/11/04/update-on-justiceforlb-the-lbbill/

Over the next few days and weeks, there will hopefully be lots of conversations about #LBBill. I love the collaborative nature of the #justiceforlb campaign and this is already the course the Bill is taking. It’s highly unusual and I can see that some people are mightily unsettled by this. But most people are energised and just jump on the bus, happy to be part of the journey.

One area of the Bill, as we expected, is already showing up as controversial. This is the final clause which seeks to remove learning disability and autism from the Mental Health Act. Concern is being expressed that without the MHA, some people could be left up shit creek without a paddle. I’m not sure about that – The Mental Capacity Act exists for the people we are focusing on and although it is still often ignored by professionals in the field, I still think it is the best mechanism for dealing with issues like capacity, best interests and deprivations of liberty.

I remember when Steven hit 18, being very shocked by how the support changed. From 5 until 16, he was under a learning disability paediatrician. Then we hit the two year void from 16 to 18 when nobody is responsible – discharged from children’s services but not old enough for adult services. And then two weeks after Steven’s 18th birthday, we suddenly received an appointment with a psychiatrist. I didn’t get that. Steven wasn’t mentally ill – he has autism. And then the inevitable happened – within two appointments, Steven was prescribed anti psychotics. I don’t know why. But it’s a familiar story. And it seems to me, it is usually done to cover the woeful or lacking provision of support. Medicate the person – that’ll shut them up.

Is autism and learning disability a mental illness? No. can people with autism or learning disabilities becoming mentally unwell? Yes, of course. If the latter happens, then the MHA will still apply, as it does for every other person in country.

But I think it would be great if #LBBill can stop that depressing cycle of: person starts to struggle with the transition into adulthood, no or inadequate services are set up; a psychiatrist is introduced, the person is moved to an ATU or long term hospital/residential placement, and then is put on a heavy duty medication regime. The problems of poor commissioning, awful support, the scandal of ATUs and the serious impact of medication get ignored and in the meantime, lots of people make lots of money out of the situation.

For me, Clause 8 follows on from the previous 7 clauses of #LBBill. The first 7 clauses are about the person’s right to live in their own home, of their choosing, in their own community. If we succeed in those, we could still be trumped by a ruthless authority that will contrive a mental health section to get their way in moving the person away. It nearly happened with Steven. It has happened with Claire Dyer and hundreds of other people. I, for one, would like to see that stopped.

Please get behind #LBBill. The next few weeks are about consulting as widely as possible. Pleas leave your comments on the #LBBill website, or on Twitter or Facebook. Something has started and it could be a game changer.

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