This post is an in depth analysis of all the activity and change since the Mazars report into the unexpected, uninvestigated deaths of learning disabled people at Southern Health NHS Foundation Trust, was published last December:
After another dire week on Planet Social Care, some fantastic news to end the week.
Chris, who became known as “the boy in the blue room” after the residential school he was living in repeatedly kept him in a padded room, is finally returning home on Monday 29th February. Chris has spent the last ten years of his life in various residential schools, in patient services and ATUs. His mother, Lynne and brother, Luke have campaigned like real Ninjas for Chris to be at home and their 10 year horror is finally at an end. Chris will be moving into his own home, which is just a few minutes walk from his mother’s house.
I remember Chris’s case coming to the Court of Protection back in 2011, a few months after our case had been heard there. It seemed that a few short months in 2011, Deprivation of Liberty cases were never out of the news. This was also the early days of Cheshire West, the infamous Kensington & Chelsea vs McDonald case, and the wonderful case of Peggy Evans who had been stopped by her LA from going on her annual cruise. I’ve also heard Justice Ryder, the judge in Chris’s case, speak and the case is quite rightly called a landmark case. Although Justice Ryder did rule that Chris was being deprived of his liberty at Beech Trees, an establishment run by Scope, the story didn’t have a happy ending at that point. Chris was moved to Calderstones and it turned out to be out of the frying pan into the fires of ATU hell.
It is heartbreaking now to watch the TV clip of Lynne in 2011 and to hear the hope in her voice after the Scope hell was over.
Then watch the interview Lynne gave to Channel Four last year and hear how, what had been hoped to be a sanctuary at Calderstones had turned into something even worse (albeit, no blue rooms). Rage and weep as you hear Lynne talk about the assaults that Chris had to endure
10 years is a terrible long time in a 25 year old young man’s life. Thankfully, Chris has a loving family and will get the support he deserves to start living his life again.
Welcome back Chris.
Here is the 2011 Court of protection judgement, addressing Chris’s deprivation of liberty – http://www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWHC/Admin/2011/1539.html&query=deprivation+and+of+and+liberty&method=boolean
You may have noticed that since the Bubb final report was published on Monday, I’ve been playing a variation of the old game If I Ruled The World. In this instance – If I Was Bubb’s LD Commissioner.
I’ve been sharing my thoughts in this blog and on social media and am struck by two things. Firstly, the amount of criticism that has been slung my way by people on the inside. It normally takes the form of – “You are too simplistic”, “You don’t understand how difficult most of these people are”, “You don’t see the bigger picture”. Fair enough?
Secondly, and this is where I’d like to tackle the criticism, is I’m still shocked by the long list I posted yesterday of all the organisations (48) involved in the Winterbourne View Concordat. I can’t get the images out of my head of them all sitting round a very large table talking about co-production, vanguards, all the stuff that organisations get caught up in.
The reason why those 48 organisations gathered together was 3500+ human beings stuck in ATUs or in patient services. Organisations assigned to deal with 3500 individuals. Could it ever succeed? Would it work if it was 3500 individuals dealing with 3500 human beings?
Just going off track for a moment, we often hear LA & CCG Commissioners exclaim that they can’t be certain of the actual numbers. Surely there is a simple (simplistic) answer to that: “You have a legal duty of care to these people. Go and find them. Now!” But in the absence of an exact figure, let’s work with 3500 for the time being. One other thing that seems to piss off the people on the inside is when I talk about the “social care industry”. Let’s face it, all those 48 organisations have become part of the social care industry (whether they wanted to or not). 3500 people in an ATU is a horrendous statistic but it is piddling when compared to the number of people in the industry. I’m sure that I read recently that there are currently 26000 people employed in administering DoLs. That’s 7.4 people for every person in an ATU.
So, here is my latest idea if I was Bubb’s LD Commissioner:
I’d assemble a team of 3500 individuals. They could come from anywhere – Best interest assessors, AMHPs, IMCAs, CQC inspectors, Experts by experience, Learning disabled people, Family members, social workers, solicitors, housing professionals, care workers. You name them, we could have them. Each LD Ninja would be allocated one of the people currently in an ATU. 3500 Ninjas for 3500 human beings. They would then be given six months to understand the person’s needs and find them a home and set up the necessary support to live in that home. The money would follow the person from their in patient setting into their new life.
Anyone fancy being one of the 3500 Ninjas?
Sir Stephen Bubb had recommended that we need a learning disability Commissioner. The role will have to two main functions: to co-ordinate and drive forward the plan to get people out of in patient services and institutions and into a home and life they can call their own. And secondly to hold to account any of the people and organisations responsible for making this a reality.
To be honest, it’s my idea of a job from hell but I thought I’d better pitch my application.
To remind ourselves, Sir Bubb got involved after the Winterbourne View Concordat went tits up. Perhaps, now is a good time to recall all the organisations who signed up for the Concordat with the rather grand title of “Learning Disability Professional Senate”. (Deep breath because it’s a very long list):
I told you there were a lot. (By the way, I slipped a fake one in there to see if anyone noticed). That is one heck of a gravy train. That achieved nothing and slipped away two years later.
Back to my pitch for the job of LD Commissioner. It’s four questions to all the people involved in the senate:
3. Would you make a commitment to stop calling for others to do things and acknowledge your responsibility and accountability in making change happen?
4. Would you state what your organisation will be doing in the next twelve months to achieve the goal of releasing people with learning disabilities from in patient services/ATUS/institutions into a home and life they can call their own?
Today Sir Stephen Bubb presented his final report in his trilogy of reports into learning disability care. It seems a long time ago that the Winterbourne View Concordat collapsed and Sir Bubb was tasked with the transforming care programme. Today marked the end of Bubb’s input. Where are we?
Most of the recommendations from the first reports still stand but today Sir Bubb introduced two further ideas. Firstly, an LD Commissioner is needed to bring all the interested parties together and to hold those parties to account. The second recommendation was to have a national PBS standard for all care workers.
A Commissioner may not be a bad idea but we shouldn’t hold our breath that there will be much holding to account. When Jeremy Hunt announces that he hasn’t the power to intervene at Southern Health, will an LD Commissioner have any more success. Will an LD Commissioner be able to hold to account those invisible, silent LA commissioners who always get off Scott free whenever there’s a national LD scandal.
As for having a national Positive Behaviour Support accreditation… I know the PBS possee will jump on me but having a PBS qualification would be a single reason for me not to hire a support worker. A PBS badge wouldn’t get within a mile of my job spec.
What has the LD world made of Sir Blubb’s last course? Alistair Burt rather dismissively announced that there is currently another action plan being drawn up. Just what we need – another action plan. The Department of Health gobbled up and spat out Sir Bubb with their usual bland, empty statement. Professor Richard Hastings unsurprisingly jumped on the PBS announcement and preened as he saw some serious nest feathering in the pipeline. Harold and Hilda, who are back together again, called for…..stuff. (It’s funny how Harold and Hilda never mention they were key members of the original concordat. Must have slipped their minds). And thousands of LD people and their families across the country nutted their living room walls.
Everything is dehumanised. Everything is presented as so complicated and challenging. Processes and buildings loom large. People hardly appear at all.
Let’s pare all this back. What do people need? A home. A support package. That’s it.
A home shouldn’t be too difficult. Either the person moves back to the home from whence they came or they move to a new home. The homes already exist. Not units. Not placements. Real actual homes. Given Steven’s current situation, I had a look for two bed properties locally this morning. I found 37 possibles. In one small village. No more fudging – the homes are there.
What about the staff? I think it’s a real shame that there isn’t a national register/directory of care workers. I can search the internet and find individual counsellors, plumbers, personal trainers but I can’t find any support workers. The reports always bemoan the lack of training. But don’t we have to take a leap of faith and let people learn on the job. I want someone skilled to work with Steven and aren’t that interested that they’ve worked with a man with dementia in Croydon. My requirements in a support worker initially are embarrassingly straightforward:
1. They need to be interested in Steven.
2. They need to understand that Steven’s human rights are the bedrock.
3. They need to be willing to throw themselves into pretty much anything that interests Steven.
4. They need to be interested in learning and their own personal & professional development.
5. They need to have a good sense of humour.
That’s it. Specifics can be learned as they learn about Steven. Great that you’ve done lots of courses about autism but I want you to engage with my son, not a case study. You are employed to be a co passenger on his journey. Let him navigate. Let him drive. You’ll learn loads and you’ll have a bloody good time.
Back to Bubb. As the waitresses clear away the black pudding smeared plates and the cleaners Hoover up the last of the croissant crumbs, what happens next? Who knows. We know there’ll be another action plan. Fair play to Sir Stephen, at the last knockings he attempted to join the dots and referred to the Mazars report.
Sadly, therein lies the clue to what happens next. What’s happened since Mazars? Absolutely fuck all. Except a deliberate and purposeful suppressing of any action. Mark Lamb wrote today that more taskforce, more action plans and zilch change is a form of psychological abuse of learning disabled people and their families. He’s right. Despite your gut instinct and the knowledge of years of experience, it is human nature to hope. The players know that and use that to maintain their power.
Now that the Bubb breakfasts are history, there is likely to be a surplus mountain of bacon. I suggest we fill our faces. We need our stamina because the change is only going to come from us.
Before the bulldozers move in.
This is not a placement. This is not a unit.
This is a home.
Hot on the heels from Tuesday’s news that Steven will be getting a new social worker, we learned yesterday, that we will have to shortly start looking for a new home for Steven.
Steven moved here in November 2013, after the 18 month struggle to find a place after being made homeless. We knew from the outset that Steven was only being allocated “temporary secure accommodation” (which sounds like an oxymoron) but we never dreamt that he’d have to move because the whole road is being demolished. The facts are a bit sketchy at the moment but it looks like the demolition is happening to either make room for an expansion of the Brunel student accommodation, or, more likely, our road has become the latest attractive proposition for the property developers who are seeing big bucks with HS2 on the horizon. Either way, the chances of the new development being social housing, are probably zero.
Our road is part of a three street estate that was built towards the end of World War II and was built to house American servicemen and their families. These houses are solidly built properties, nothing like the pre-fabs that the UK were building at the time. The houses have obviously been modernised over the years and apart from needing a bit of TLC to the exteriors, they are in remarkably good nick. They are not being demolished because they are inhabitable.
Since Steven has been the tenant here, I have meant to be checking the local Locata site every fortnight and bid for a permanent property for him. I confess that I haven’t been particularly motivated. This is because the house is almost too suitable for Steven. It’s a good size. Considering we have support staff here most of the time, we never feel cramped. It’s close to all the places that Steven goes to during the week. And it’s very close to our extended family and this has been enormously positive for Steven, who gets to see his aunt, uncle and cousins a lot more than he used to. Why would I want to rock that boat and move him to a flat on the 9th floor of a tower block? I had a quick look at Locata today and there were 8 properties on show in our area. Seven of them were one bedroom flats and the other one was on the 9th floor in the neighbouring town. Most of them had the condition that you had to be over 55 to be in the running. This has been my experience of Locata on the few occasions that I’ve browsed the site over the past two years.
It’s funny because a couple of days before this news, myself and a support worker were talking about the confidence Steven has as he goes about his business in his home. This is such a stark contrast for the first couple of years after Steven came home from the ATU. He had no confidence and needed constant reassurance that he was staying put. Also, because he had been so institutionalised, he used to ask for permission every time he went from one room to another. We got none of that now. I’m proud of how we have built Steven’s home, so that all the things that are important to him are within easy reach within the living room. Walk into the lounge and you’d never know that I lived there too. It is the home of a young man and clearly has his mark stamped on it with his life size Mr Bean cardboard cutout, his Abba coasters that mark the spot for the remote controls, his Holby City cast photo and his Basil Fawlty car on the sideboard. When we talk about placements, units, supported living – this is a home.
There’s not much I can do to stem this wibbly wobbly feeling that bounces around in my gut. People in homeless temporary accommodation are probably at the bottom of the pecking order when it comes to consultations and being kept informed. We will just get a phone call one day, telling us the date we have to move out by. For a Mr Control Freak like me, that can be agony. But the council aren’t interested and the housing association aren’t interested in helping people manage their anxiety about the prospect of homelessness. It could be two years away but that still feels too vague for my stomach.
You might be thinking, why can’t Steven move into my flat. Of course, if the worse comes to the worse, that will have to happen. But it will mean bang goes my workplace – I can’t see clients in the flat whilst Steven is there. I’d have to look for a new room to rent which I won’t be able to afford. The good thing about the flat is that although I have to pay the council tax and the annual service charge, I’ve saved a lot on the room hire I used to pay at the Arts Centre. I couldn’t afford to pay out for all three. Checkmate. But also, Steven will be 26 next month and needs that space away from me. I remember in the first few months after Steven came home from the ATU, I was harangued at every meeting by Whistlers Mother and her manager with the question, “At what point do you expect to see Steven living independently from you?” I wanted to say, “Christ – give us some time – he’s only just come back home” but instead used to mutter vaguely “I dunno. perhaps when he’s about 25”. They don’t ask anymore. They know it’s much cheaper if we live together and money always trumps independence.
I registered with Lets For Life earlier. They’re an organisation that sets up housing for people with disabilities. We went through a similar thing with Housing & Support Alliance back in 2013, and although it can be quite stressful, it does open up possibilities. We only dropped out of the scheme because at the last minute, the council came up with the Cowley house. Steven wouldn’t need much input from Lets For Life – he already has a support package and a team of workers. He has his own furniture. All he needs is the home to put them in. I found myself browsing Zoopla this morning and came across two properties that would be ideal (ish). One is a flat, exactly the same as mine, directly underneath it. It put me in mind of Kenneth Williams living next door to his mother and popping in each day for his cod in cream sauce. Perhaps that will be too close. But there is a block identical to mine down the next road, overlooking the river and there is a two bedroom first floor flat currently available to rent there. Wouldn’t that be the dogs bollocks.
Whatever happens, it’s the start of yet another stressful few months (years?). I read back some of the blogs I wrote back in 2013 and they were a repetitive dirge of homeless anxiety. I don’t want that again.