Fatal Placements

Last weekend I blogged about some of the lessons that families need to learn that have arisen from the evidence at Richard Handley’s inquest. One of those lessons was about trying to recognise the sham of rebranding a care home into supported living and the dangers that can follow that move.

The last two days of the inquest have seen staff from Bonds Meadow give evidence. Some of them have only worked there since the place was reclassified whilst others knew both regimes. I’ve been horrified but fascinated about the little details that reveal the bigger picture and the language used that gives the whole game away.

I have to admit that my idea of good supported living is very sketchy. Most of the examples I’ve come across are purpose built (or converted) complexes with several flats being housed in a single structure. The sizes vary dramatically. The one by me has 24 flats. I’ve heard of others with just six. I guess my image of those flats is of a self contained home: a living room, a bedroom, a kitchen and a bathroom. Sometimes they are studio flats with a living room and bedroom combined. The bigger ones often have a large communal indoor space for social gatherings and often tend to have an office on the premises for staff to gather. But the life someone would lead inside their own front door would pretty much self determined, independent and with the support they uniquely need.

Bonds Meadow sounds nothing like that. Here’s a few statements from the inquest that reveal that perhaps it’s still a care home in all but name:

“Richard spent a lot more time in bed. He didn’t really come down for tea”.

Coming down for tea suggests there was still a communal dining room and kitchen. If he had his own flat with his own kitchen wouldn’t it have been, “He didn’t really get up for tea”.

“There was a budget for food and cleaning supplies”.

Why? Richard had his own income. He could have brought his own food and washing up liquid out of his own money. Does this mean that all the residents’ money was pooled and supplies bought en-masse? How would the Office of the Public Guardian feel about that considering I had to differentiate between my toilet rolls and Steven’s toilet rolls at last year’s audit?

“He would be encouraged to join in but he did spend a lot of his time in his bedroom”.

Join in? With what? With who? Again this suggests lumping all the residents together in one space. Surely having your own flat means you can chose times when you socialise and invite people in or go out and times when you can be by yourself. Joining in immediately makes me think that there were never enough staff on duty so to cover that up and make it easier to manage, the residents were herded into a communal space.

On the subject of shopping: “We’d always encourage the service users to come with us so there was some participation”.

By referring collectively to the “service users” the implication is that again, the residents are grouped up together. A trip for three to Tesco? I dunno but that makes it sound harder to achieve a truly person centred shop. For many people, shopping is a chore. A necessary evil. I do both mine and Steven’s weekly shop online because Sainsburys is likely to trigger a meltdown for both of us. And what’s with the “participation”? Its service speak. It’s someone on the outside being allowed to come inside.

“Originally supper was for people who needed something with tablets before bed but they all jumped on the bandwagon”.

“They”. Typical othering. The dehumanising of the learning disabled person. And jumping on the bandwagon! They were talking about supper snacks! There’s a contempt in that statement that makes me heave. The follow up piece of evidence mentioned that Richard kept his snacks on a “shelf in the kitchen”. Once again, I suspect this was communal – “the” kitchen, not “his kitchen.

Somebody on Twitter tweeted “This is so different from how Steven lives his life in his home”. That thought kept me awake for hours last night. It never occurs to me that Steven’s home is supported living. Nobody I know has ever used that term in reference to his house. One social care professional once described it as his “placement” but I made her eat 6 hard boiled eggs whilst singing Green Door and she’s never used that phrase since. Steven’s life and the life of the Bonds Meadows guys are poles apart.

How does this deregistering a care home business work? Does the manager of the home ring up the CQC one day and announces they built several front doors and everyone is now wonderfully independent? Do the CQC check that the new regime is what the provider is claiming? Deregistering seems very popular at the moment. I’ve read of several ATUs that are going down the same road.

Everything changes. Nothing changes.

But from the information from the inquest (and my gut tells me this is commonplace rather than a rarity) deregistering can make a place become dangerous overnight. Standards and checks that would have been in place become history overnight. And the residents are left with a regime that they are unable to manage.

Where is the Mental Capacity Act? At the time of Richard’s death, the Deprivation of Liberty Safeguards didn’t apply to supported living. But they do now. Is anyone checking that the residents’ legal rights are being upheld? We know the answer to that question. Who gives a toss!

The more I learn about Richard’s and the other residents’ experience of supported living, the more terrified I become. To imagine that as Steven’s future breaks my heart.

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The Hermeneutics of Victimology

The last five days has seen the first week of the inquest into the death of Richard Handley.  The inquest has been expertly live tweeted by George Julian and following the testimonies unfold has been harrowing reading. If you want to catch up on the evidence to date, follow @HandleyInquest on Twitter.

Richard died an appalling death. Constipation had been a problem from birth but his family, and latterly the care home had managed this distressing issue. Things started to go wrong when the owners of the care home deregistered its care home status and rebranded itself as supported living. The level of support that Richard had previously received dropped off alarmingly, all in the name of “independence” and “choice” but was really about saving money for the care company on that pesky thing called “care”. The “flats” became dirty as it was no longer seen as anyone’s job to do the cleaning. More seriously for Richard, his diet, which had been a mainstay in managing his condition changed as it was decided that Richard had the capacity the decide what he should eat. The rebranding was the starting point for the catastrophe that was to follow. Two days before Richard died medics removed 10kg of faeces from his rectum. That was just a small amount in his body as the post mortem revealed much more had become impacted in Richard’s bowel. His abdomen was so extended as to resemble someone “40 weeks pregnant”. Richard vomited up his own faeces. In the end, his heart gave out. We hear a lot about “a good death”. This was a very bad death.

The inquest has been distressing but compelling reading. The importance of George’s work has become more and more evident as the week has progressed. We are learning things of such importance about the coronial process, the state of adult social care, the tactics that professional bodies use to subvert justice and to avoid accountability. I knew some of this stuff through my experience in 2010 and others’ since but this week feels like we now know what the template is. This inquest is so similar to Connor Sparrowhawk’s inquest, it is beyond coincidence. It is data that we must learn, absorb, pass on and use to bring about the change we need. The change to seeing learning disabled people as valuable, as having human rights, in life as well as death.

There are a number of things that families impacted by social care need to learn from the remarkable records that are being compiled. To use that old professional cliche – “lessons must be learned”.

Richard’s inquest is glaringly revealing how dangerous supported living can be when the providers have a different agenda. We know this already from the death of Nico Reed but the evidence this week shouts at us that when money saving/profit making is disguised as person centred independence, horrific outcomes are just around the corner. Barren lives lived because the care provider won’t provide enough staff to facilitate meaningful activities. Good health maintenance jetisoned because “choice” is used to disguise the truth that the provider can’t be bothered to invest in the health of their customers. Lesson one – we have to improve our laser vision. We have to see what is going on behind the person centred, independence smokescreen.

In order to achieve the above, the State and the care providers have to exclude the families. And to be brutally frank, part of the exclusion is to lie to them. Richard’s family genuinely believed that his diet was being followed. They sincerely believed that his toileting routines were being maintained. Why should they think otherwise? Lesson two – we need to think otherwise. We cannot trust that there isn’t an alternative agenda in play.

As sure as night follows day, family blaming follows the exclusion of families. In the cross examination of Sheila, Richard’s mother, the suggestion was made that the family hadn’t told the providers or monitored Richard’s diet and toilet plan. Reading it felt like Groundhog Day. At Connor’s inquest, the psychiatrist’s brief battered Sara with questions along the lines of; why didn’t Sara inform the unit that Connor needed bathtime supervision. It’s nigh on impossible for the person (the bereaved person) not to take this personally. They musn’t. Lesson three – do not be drawn into the blame game and do not take it personally. Obviously when you are under attack, the tactic has more purchase. But as we have learned through following these inquests, the name of the game for the various barristers is to shift blame anywhere than on their client. From their point of view an inquest isn’t a fact finding inquiry. It is a vehicle to avoid any accountability at any costs. Yesterday we heard the testimony of the lead GP in the practice Richard was registered with. In the space of ten minutes, the blame was shifted from the computer system, the trainee GP, Richard’s mother, the care company. It was hard to keep up. It was the most horrid game of non accountability bingo. But that is the purpose of an inquest for the professional “interested parties”.

It still shocks me to my bones, how much the Mental Capacity Act is ignored or abused. One of the witnesses said that they assumed Richard had capacity because he wasn’t disagreeing with the professionals! It became clear very early on that the and the notion of best interests didn’t appear on the radar of most of the medics involved in Richard’s care. I tweeted that I felt that in case after case, the ignoring and manipulation of the Mental Capacity Act must be wilful. It can’t be accidently forgotten about. After all, the law is over 10 years old now. A social care professional who I respect enormously replied that the professionals know their law and tend to ignore it when it doesn’t support their own agenda. This is terrifying confirmation if you have a learning disability or are a family member. The piece of legislation that is meant to protect and enable you doesn’t work unless you are compliant with the State agenda. Lesson four – know your law. You can be trusted more than the State to make a best interests decision without an unpure motive.

The final lesson from this week is utterly bizarre but led to the title of this post (Thanks to my friend Val for the title). As yesterday’s hearing was wrapping up, one of the barristers announced to the coroner that the CEO of the hospital trust who he was represented, reported that he had been “goaded” on Twitter. George was understandably horrified by this accusation & trawled the Twitter feed for any goading tweets. Unable to find any, she tweeted the CEO to ask for clarification & he replied with the following screenshot:

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Can you see what the CEO did here? This was evidence from the morning session. If it was “goading” it was done from the witness box. The inference in his complaint though was very different. Does this ring any bells? How about the time that Katrina Pearcy reported that Justice For LB supporters had hacked the Southern Health account? It happened to me in court. As the social work manager took to the witness box he asked if he could make a statement before taking counsel’s questions. He announced that the social worker was absent from the court due to sickness. Her sickness being stress brought on by receiving an anonymous, threatening letter signed by “a friend of the Neary family”. No letter was ever produced to back up the accusation. Thankfully Justice Jackson gave the claim a nanusecond of attention. He didn’t mention it all in his final judgement.

So what’s the point? Nobody is taken in by these allegations. They must be dreamt up by the bodies’ PR departments. They are designed to shift the “perpetrator” into the victim position. Grandstanding for sympathy. It’s not meant to appeal to the court but to the wider audience. After all we have a strong victim culture now, so any claim of “goading” or trolling or threatened violence is likely to resonate. Job done. Lesson Five – do not engage with this game. You are being used as collateral. Just trust that the people who matter will see straight through the nonsense. It’s horrible. A well paid CEO is so brittle he needs to wrestle the Handley family from the victim position (not that once have Richard’s family played the victim card. They have far too much congruence for that).

There’s bound to be more lessons that I’ve overlooked and more to come as the inquest continues.

But we have to get a handle on all this. We’re in this for the truth; our lives. We have to understand the rules of the game that our search for truth takes place in.

CaminoLB @ Cowley

I’ve had a little idea.

Anybody want to join in?

In the autumn of 2016, the Justice for LB crew did the Camino walk. Sara, George, Alicia, the My Life My Choice gang and several other campaign supporters did the inspirational walk to honour Connor and all those other people who have died preventable deaths. The daily updates, the photos, the stories certainly made the heart sing.

From 31st March to 14th April the Justice for LBers are off to Spain again to complete another phase of the Camino walk.

Join us on the #CaminoLB 2018

This morning Alicia tweeted that someone who is unable to go to Spain wanted to support the campaign and suggested a local walk to them during the big fortnight.

I thought this sounded a brilliant idea and said that I would like to do a #CaminoLB@Cowley. As the day has progressed, I thought it would be quite powerful to do a walk from Steven’s house to the ATU that he was detained in during 2010. It’s not very far actually so decided to take the long route via the canal towpath.

Wouldn’t it be great if any day during the fortnight supporters did a similar walk in their area? A walk from your home to the nearest ATU. A photo at the beginning and a photo at the destination? To

Who is in?

UPDATE (19th January)

I’ve received some feedback expressing the fear that if the destination of the walks are ATUs, this may piss the ATU off and this could lead to negative repercussions for the person detained. I do understand that fear and it came up often during the 7 Days of Action campaign. At the same time though I can’t recall seeing any evidence that there are better outcomes for families that don’t speak out about their experience.

Walking to an ATU is just one suggestion. If people are interested in taking part to honour those who’ve died preventable deaths, the walk can be to anywhere.

For me, the most important thing is to show solidarity with the #CaminoLB walkers.

One Of Our Own

Bear with me. I’m trying to pull several strands together in this post.

Yesterday I saw one of those almost daily conversations on Twitter about what do you call a disabled person – a client or a service user? I cheekily contributed that perhaps we should follow Jeremy Hunt’s lead when he spoke about learning disabled people at a House of Lord’s select committee and call them “commercial opportunities”. It would be more honest. My problem with “service user” is that it infers that someone is using services but we all know there are no longer any services left to use. In 2018, it’s a meaningless term. But the term “service user” others and I guess that’s the point of it. It establishes the unequal dynamic which most “commercial opportunities” encounter.

Since last Wednesday, Steven has had a whole army of workmen in his house sorting out the damp problem. It’s been fascinating watching how they interact with Steven. Steven doesn’t discriminate so to everyone of them it’s been, “Hello man. What’s your name man?” The most heartening interactions over two days was with the younger of the two bathroom fitters. Whilst the guys were working Steven put on his Amy Winehouse DVD. Amy was obviously a favourite of the workman and he started singing along to Back To Black. This excited Steven no end and a relationship was formed. Pare back the quirkiness of Steven’s conversation and it was just two guys sharing a mutual interest. When they were saying their goodbyes on Thursday, the workman shook Steven’s hand and said “Goodbye Steve” and it was genuinely warm. He’ll remember Steven. Needless to say, Steven will remember Lee forever. After all, he still remembers Eric the boiler man from 1997, who liked Lionel Ritchie.

I had a nice moment in the gym on Monday. On Friday, I felt something go pop in my right tricep. It was quite tender all weekend and I was tentative to say the least as I started a chest workout on Monday. Later in the changing room, one of the regulars who I’d nodded to before but never spoken to asked me how my workout had gone. I told him I’d been a bit cautious after what happened on Friday. He said, “You should have asked me or Mo (his training partner) to spot you”. I replied that I didn’t like to as they were immersed in their workout. He then came out with the classic, “You daft cunt. We look after our own here”. It made me laugh and I found it quite touching. I’m not sure what I’ve done but I’m now classified as “one of our own”.

This morning whilst channel hopping I came across a debate entitled “Is autism a gift?” It was an irritating experience and within seconds it became about “those people with incredible gifts”. One caller phoned in to say that autism was both a gift or a curse. Whatever your view, it was a classic example of them and us. The gift and a curse comment covered all bases as it allowed the speakers to express admiration and sympathy in equal measure. The discussion petered out but the overriding impression was that autistic people are not one of our own.

I remember one of Steven’s cab drivers telling me how much he enjoys driving Steven around whereas some of his colleagues had asked to be taken off the rota. I thanked him and he said, “you either get him or you don’t”.

Is it that simple? Are you either “one of our own” or a gift that elicits admiration and sympathy?

Or are you just a person? Another human?

Flawed Floors

It seems such common practice in the world of social care that requesting support or meeting needs gets expressed in terms like “fight” or “battle”. The words aren’t accidental. They get used because they describe exactly the situation so many people find themselves in. It cuts across ages: from SEND experiences in early life through to building a support package when you’re transitioned into adult services.

Do you remember that advert where the logo was, “the bank that likes to say yes”? Social care is the bank that likes to say no. It does so with such alarming frequency that it can’t be an accident. It must be intentional. That’s when the battles start. Tribunals, appeals, ombudsmen, court of protection all come into play as arenas for the fights and thousands of pounds are spent (wasted) in justifying the “no” position.

I’ve been so immersed in the social care swamp for over 20 years that I tend to take a battle for granted. Sometimes I ponder whether the sort of battles the learning disabled and their families encounter happen anywhere else. I spent 16 years working for a local authority. Firstly, I dealt with claims in the Housing Benefit department. I remember delays in processing claims but I don’t recall any policies or practices that denied people what they were legally entitled to. I never attended meetings or training where we were instructed how to circumvent the regulations to stop people receiving their benefits. Later I became a training officer and my memory is that if a training need was identified, it was acted upon. Also, I was never asked to manipulate the training that I was delivering to save the council money. I left there in 1999 and wonder how much has changed since.

Steven moved into his Cowley home in October 2016. Almost immediately we realised there was a damp problem: mainly in his bedroom but also in the bathroom and hall. I reported the matter straightaway and realised that another battle might be looming. Typically, the first inspector tried to blame us for the damp. Not opening the window enough. Putting wet clothes on the radiator. Breathing at night. I made that last one up but the initial response from the council focused resolutely on avoiding accountability rather than instigating repairs. This position lasted months and in the meantime the damp worsened. I brought a humidifier. Washing down the walls was added to the support workers’ weekly rota.

Last year, the shower packed up and gave the first evidence that our suspicion that the shower was creating the damp validity. After the workmen took the tiles off the bathroom wall, we found the wall the soaking. But still nothing changed. New shower and new tiles but the damp persisted. The walls have been sprayed several times. I’ve spent hour upon hour on the phone to council repairs. But still the damp spread.

Just before Christmas we had another inspection. The inspector obviously hadn’t been on “the bank that likes to say no” training course. For the first time in 15 months someone took the issue seriously and he was focused on sorting it out. Last week, they took the shower out and replaced it with a bath. This week the walls are being stripped back to the rendering and being replastered. An air vent is being fitted. Last week’s bath fitters showed me the extent of the problem. The floor was sodden. The back wall was sodden. They couldn’t finish their work until the area dried out. Tomorrow, they’re coming back to lay a new floor and fit the bath panel. The plastering should be completed by tomorrow evening too. Hopefully by the weekend we’ll be able to redecorate Steven’s room and he can move back into it. Steven has coped very well with the disruption. He made a new friend in the bath fitter in their mutual liking for Barry White and he is enjoying the adventure of sleeping in my room.

I’m not saying that the 15 month fight to right this problem is because Steven has learning disabilities. For once, that doesn’t come into the equation. This must be widespread. A deliberate policy to avoid accountability through blame followed by patchwork repairs and interminable delay must be commonplace.

As a way of dealing with people, it’s as mouldy as the bedroom wall.

 

Could It Be Forever?

Determined to be a bit more upbeat after yesterday’s sad post.

For Christmas I got a copy of the Boys Book of Knowledge annual from the year I was born (1959). Amongst its many joys is a section on how to construct your own time machine. It tempts the boys with the premise of flying forward to 1982. Disappointingly it doesn’t prepare boys for an encounter with Duran Duran. I’m no expert on time machines but the article does seem over reliant on cardboard and “pieces of wire you will find in your father’s workbox”. But I’m prepared to give it a go. I don’t have a workbox ( I don’t remember my father having one either) but I’ve smashed up an old toaster to collect the necessary wires. I need to pull my finger out because I need the time machine to be assembled by Wednesday. Then I can transport myself to Tuesday 17th and all the repair work at Steven’s house will be complete. Also, by then, we’ll be deep into January and the annual anxiety about being taken away will have started to fade.

As I wrote yesterday, Steven wants to “live in the Cowley house forever”. Forever? It’s a tricky prospect at the best of times but when you’re learning disabled your “forever” is so reliant on other people. It’s probably better to focus on the next week rather than on forever.

One thing that 2017 showed was that there is no reason why Steven shouldn’t get his forever wish. He’s blossomed in his own home. My favourite memories of the year are the smiles of utter contentment.

Here are some forever moments from 2017:

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