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(Not) Joining The Dots

We hear a lot in social care about joined up thinking. Joined up working is pretty popular too. It’s such a shame that not much effort goes into joining up the dots. This post is a clumsy attempt at joining the dots of a few recent social care/ ATU stories.

There have been a number of news reports about the Cygnet owned hospital in Woking. This is the place that Matthew Garnett’s family fought like mad to get him moved from as they were so horrified by how much Matthew deteriorated whilst there. This week the CQC published their latest inspection report with an horrific overall rating of “inadequate”. Please read the report below. It makes for very distressing reading though:

http://www.cqc.org.uk/location/1-131834861

The report is expertly hidden on the Cygnet website but what takes pride of place is the news of a second unit currently being built in Harrow. This new 14 bed unit adds to the existing 44 bed unit on the same site. The most recent CQC inspection report for the current Harrow Unit carried a “Requires Improvement” rating.

https://www.cygnethealth.co.uk/news/building-work-begins-extension-cygnet-hospital-harrow/

Cygnet are clearly on an expansion roll. The new Harrow Unit follows their new 56 bed hospital that opened in Coventry back in April.

Another private company currently on an upward trajectory (profit wise) are ASC Healthcare. Back in August they opened an 18 bed unit in Manchester. Now, they have announced that building work has started on a 54 bed unit in Wrexham. I don’t know about you but that seems quite an investment to me. Local commissioners have distanced themselves from the project but you know the catchphrase from A Trade in People – “If you build it, they will come….”

http://www.aschealthcare.co.uk/news-story/wrexham-low-secure-hospital/

Arcadia is the huge American company that recently snapped up all the Priory Group facilities. They have are also the parent company of Partnerships in Care. You may remember Stephen Andrade, one of the original dudes from the first 7 Days of Action campaign. Stephen has been in one of the Partnership in Care units for nearly five years. Back in March, the hospital received a “Requires Improvement” CQC rating. This week Stephen’s mother, Leo, posted a very disturbing update on her petition page. A police investigation is currently taking place so it would be inappropriate to comment further than the details Leo has already disclosed. It was recently discovered that Stephen’s clavicle was broken. Clavicles don’t just suddenly break for no reason. CCT footage has shown constant use of physical restraint, which appears to be the cause of the injury. Will the dots be joined on this one? What has happened in the six months since the “requires improvement” report? Will local safeguarding take this seriously?

https://www.change.org/p/nhs-islington-bring-my-son-stephen-home-care-for-him-in-our-community-bringstephenhome/u/21700942

Perhaps the strangest announcement of the week is the news of a 22 bed unit opening in Oxfordshire. What makes this one stand out is it’s an NHS unit. Qué Transforming Care? The mantra of TC is that it is about closing beds. Building 22 new ones doesn’t make any sense. We know that STATT was closed after the preventable death of Connor Sparrowhawk. We know of Oxford families who have campaigned tirelessly for crisis support. I think they had in mind at home support or short term respite provision. I don’t think they were after another 22 bed institution.

https://www.bbc.co.uk/news/amp/uk-england-oxfordshire-41611668

The awesome Julie Newcombe expressed her dismay on Twitter and asked for the rationale behind the build. She received the following reply from Anne Webster of NHS England:

“It’s part of the overall plan to reduce the overall number of hospital beds whilst being closer to home. A secure hospital closer to home = shorter length of stay & maintains relationships with family & community easier. Closures in other regions. It’s not alternative to crisis beds which would be part of CCG (non secure services) planning as alternative to admission to ATUs  “.

I find that baffling. Do you reduce beds by building 22 new ones? Local doesn’t mean shorter stays or maintaining relationships. Steven Neary was in a unit about half a mile from his home but was still kept there for a year. STATT was just down the road from Connor’s home and we all know how difficult the Unit made it for Connor to maintain his family relationships. I can’t find any logic in the response to Julie’s question.

Hard to know where all this leaves learning disabled people and their families. As I’ve been writing this, Steven has been listening to The Beautiful South song “Hold On To What”. He likes this song because it’s got a cheeky swear word in the lyric:

“Many years of service with a smile.

Up shit creek and down the Rhine”.

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The Broccoli’s In The Bin

Something rather wonderful was suggested on Twitter this morning. Inspired by yesterday’s post “The Advocacy Games”, @ChoiceAdvocacy put forward the idea that we need a new metaphor to call out the spin of social care. A 2017 version of “Hey, the king’s not wearing any clothes”. The suggestion was that we adopt Steven’s response when he exposed the lie of the Unit’s food logging system:

“The broccoli is in the bin”.

Don’t get involved in a debate with the spinner. Disengage from the nonsense. Just simply tweet back, “Lol. The broccoli is in the bin”.

There were two fantastic examples of where this response would be the perfect reply earlier. The only reply, frankly.

There seems to be a gamut of social care conferences this week. It’s impossible to keep up. I saw a tweet from one where the delegates were assembling for a “Keeping it Real” plenary. I have a small tip for the organisers – your client’s lives are very real. It’s when you come along that they become unreal. Take Steven’s Community DoL. What could be more real than a man going off to Brighton with his mates to have a swim and meet up with an old friend? Just imagine a quaint version of Quadrophenia. In the eyes of the state, that trip, because it involved support workers amongst the Brighton bathers, constitutes Steven being deprived of his liberty. Perhaps the conference session should be titled, “Turning the Real into the Unreal”.

“Lol. The broccoli is in the bin”.

A quick scroll down by Twitter timeline and another conference, another tweet: “There is a long way to go before service users and their families accept partnership working”. Oi, Mr Tweeter. Families don’t want partners. Whatever happened to Munby’s famous quote about the state being the servants and not the masters? Partnerships is such a self important idea. When these people are in their own homes and their toilet floods, do they consider themselves in partnership with the plumber? It’s making out a level of input that is far more valuable than it really is. What do we want? We want you to provide services and we want you to provide the money to pay for the support. That’s it. Off you go now. Thanks.

“Lol. The broccoli is in the bin”.

Not a day goes by without an NHS Leaders conference. They always come up with prime material for the nation’s new catchphrase. Here’s just two from this week:

A call for “Disruptive Innovators”. Or it could have been “Innovative Disrupters”. I’ve forgotten already.

How about the great and the good going through a “Leadermorphis”? Altogether now….

“Lol. The broccoli is in the bin”.

If you’re actually in the same room and hear one of these gems, you need to act out the “Lol”. Bend double. Clutch your sides. Wipe your eyes. Impersonate the laughing policeman. Much more satisfying than debating the finer points of Leadermorphis.

If the disruptive innovator gets pissed off by your collapse into mirth, just say, “Look. We’re a partnership. I see our partnership along the same lines as Morecombe and Wise. You’re Eric, the comedian and I’m Ernie and my job is to crack up at your jokes”.

All catchphrases have to start somewhere. Even Bruce had to work his “Nice to see you, to see you nice” before it caught on.

Steven is watching.

The Advocacy Games

I’ve been invited to speak at an advocacy conference next week and have been asked to talk about the various aspects of Steven’s life where I have had to be his advocate. In preparing my talk, it’s brought home again that since transition to adult services, the areas where I’ve had to advocate are the very biggest stuff of life. The foundation stones to a normal human life.

Throughout 2010 to 2011, I had to advocate for Steven’s liberty. A fight to release him from unlawful detention, with the spectre of a life of institutionalism in the future should his liberty not be secured.

Then from 2012 to 2016, the fight was to get Steven a home. From being made homeless in 2012 (again unlawfully), until finding a home last year, the fight to be heard and for Steven’s needs to be respected was relentless.

And finally, from 2013 and ongoing, I have to advocate for Steven to get the right amount of funded support to enable him to live in his own home. Although the process is easier for me now, maintaining it is a very precarious venture. A change of social worker, a change to policy, an over officious direct payments manager can cause everything to come crashing down. It’s always unexpected so you have to be in your toes at all times.

Families are between a rock and a hard place when advocating for their children. Post 18, families are considered irrelevant and are actively excluded. Their input cannot be acknowledged because that exposes the void in services. From 2012 until the very last month of our homelessness adventure, the Local Authority did absolutely nothing in helping to find Steven a home. It left me to wander down the many blind alleys of private renting. Then I was left to navigate the labirynth mazes of the council housing bidding process. It would have been completely beyond Steven on his own: it was beyond me much of the time. It was taken for granted that I would do this but having got through the maze, I ended up dismissed as just a “live in carer” on the tenancy agreement.

The State sees families as a hindrance but relies on them totally for the stuff it is not prepared to do.

How much of the advocating that I do could Steven do for himself? The answer is a fair bit if the State was to view him as a human being. If the Local Authority had a genuine committment to human rights and the Mental Capacity Act, Steven’s voice may be a little more respected. Unfortunately we live in times where what should be positive legislation for learning disabled people is manipulated or ignored to serve the State’s hidden agenda. Lack of capacity is assumed; best interests decisions are contrived and violent repercussions are never far away for the learning disabled person who inadvertently exposes this.

Long time readers of this blog may remember the food recording story from Steven’s time in the Unit. The social worker had decided that I used food as a means of gaining Steven’s compliance. She kept boasting of how they’ve turned Steven’s diet around. I saw one of the logs and said to Steven, “Well done mate. You ate steak and broccoli last night”. He replied, “Just the steak. Threw the broccoli in the bin”. This honest answer from Steven had terrible repercussions. It exposed a lie: they recorded what they dished up, not what he ate. But because the lie couldn’t be admitted, Steven and I were severely punished for exposing it. The point of retelling the story is that revealing the kings new clothes of services is a tightrope that has to be precariously walked whenever there is some advocacy that needs doing. It’s horrid because it leads to full strength incongruence.

The truth is there are many areas of Steven’s life where he is capable of advocating for himself if he was afforded the respect of being listened to. Because he’s not, I have to step in. I’m rarely listened to either but I can play a tactical game that Steven wouldn’t be able to. I can study the law to firm up the ground I stand on.

So let’s give family advocates a bit of latitude. I don’t want credit. But I don’t want the lie that I’m irrelevant either.

Without me advocating out of love and duty, none of those three foundation stones of Steven’s life would be in place. Nobody from the State would be bothered.

Old Dreams: New Days

Yesterday, I stumbled across a ghost. It was me.

In preparation for my return to the gym today after a five year hiatus, I’d slipped down an Amazon wormhole. I’d only gone into Amazon to buy Steven the new Benny Anderson CD for Christmas. (I do think it’s wonderful that a man in his late seventies has managed to get primetime TV advertising for his latest album). Anyway, whilst there I thought I’d check out the gym gear and came away with some boots, three pairs of workout bottoms and five sweatshirts. It’s been an expensive few days as I’d already done a bulk Holland and Barrett order on Friday.

My other job for the day was sorting out our online photo albums. Steven loves looking at them but has an uncanny knack of moving photos from one album to another. It was while sifting through the Somerset 2011 holiday collection, I saw the ghost. It was a photo of me taken at the end of a three month bulking session. The biggest shock was that it was taken 10 years ago in 2007. I know it’s a sign of getting old and time speeding up but I thought it was more recent than that.

I remember the plan well. My trainer at the gym had the idea that I should enter a bodybuilding competition. I was 48 at the time and he was convinced that with two years hard work, I’d be more than ready to enter an over 50s contest. I wasn’t convinced at all but he persuaded me to try an experiment – to do a three month bulking programme so that I could see what could be achieved. I had to follow his every word – train how he told me to train; eat what he shoved down my throat. And much to my surprise, in amongst the pain, I actually found myself enjoying the experience.

I got much bigger than I was in the photo but we never took any more snaps. I never did the competition. I damaged my shoulder in 2008, so everything got put back a few months. Then one day he came into the gym with the flier – an open bodybuilding show in High Wycombe in April 2010. A month after my 52nd birthday and a passport to the Masters category.

Regular readers will know where the story is going by the date. In the midst of my contest prep, Steven was taken off to the ATU. And that was that. My mind went. I couldn’t find time for the training as I was in and out of multi disciplinary meetings. The times I could have been devoting to a monster leg workout, I was having to have a monster phone workout, trying to find a solicitor. By the summer, I’d stopped training altogether. I was exhausted from the fight and had no energy for anything else.

I did go back to the gym when Steven came home but six months later, Whistler’s Mother pulled another stunt and cancelled the contract with the support agency at a moment’s notice. For two weeks I had no support at all and couldn’t go anywhere – work and the gym went out of the window.

Fast forward 10 years from the photo. This is the little seed that got planted in my head yesterday. “You missed out on the over 50s. How about you aim for the over 60s?”

After all, if Benny Anderson can still do what he loves and does best at 77…..

received_10154514963772274

Transforming Care with Brian The Snail

I don’t know about you, but for me the word “Transforming” conjures up pictures of something dynamic taking place. Action. Movement. Things significantly better afterwards than before. You hear the word a lot on TV makeover programmes – “With the help of Gok’s team, Brenda was transformed from a 50 year old frump into the classy woman you see before you”. It’s very much a word of our times.

The NHS Transforming Care programme can claim none of the above adjectives. In terms of dynamism, it is less Gok Wan and more Brian the Snail. There is no sense of urgency. Nobody seems particularly bothered about the appalling human stories behind the bland statistics. It has become another uninspiring bureaucratic exercise.

NHS Digital publish monthly stats. The pace of change is glacial. The human tragedies rendered meaningless by the endless sea of figures. As you plough through the spreadsheets, it is impossible to retain the truth that the pages contain the daily realities for 2460 human beings.

Here are the lowlights of the August report. To demonstrate that Brian the Snail is truly in charge, I’ve compared the latest figures with the March 2017 figures.

But please remember these figures tell the story of Eden Norris, Tony Hickmott, Tianze Hi, Stephen Andrade, Pete Lawton, George Bartzis & 2454 other human beings.

Total number of people in LD in-patient services:

August 2017 = 2460        March 2017 = 2595

Length of time in services:

1 to 2 years = 295

2 to 5 years = 650

5 to 10 years = 520

10 years + = 360

Distance from Home:

Less than 20km = 630

20 to 50 km = 475

50 to 100 km = 440

100+ km = 560

Unknown???= 350

Top Ten Private Providers of in-patient beds (current patients):

Partnerships in Care: March 290 – August 270.

St Andrews: March 210 – August 195

Cambian: March 150 – August 140

Huntercombe: March 90 – August 100

Danshell: March 90 – August 95

Priory: March 70 – August 80

Cygnet: March 80 – August 75

Lighthouse: March 60 – August 60

Jeesal Akman: March 40 – August 40

Cheswold Park: March 25 – August 25

Top Ten Commissioning Areas:

Cumbria & North East – 210

Cheshire & Merseyside – 140

Greater Manchester – 120

Lancashire – 100

Black Country – 95

London South East – 90

South Yorkshire – 85

Kent & Medway – 85

Birmingham – 80

London North West – 75

One final statistic. 740 human beings included in the total 2460 currently in in-patient services are classified as “Do not need in-patient care”.

Brian – pull your finger out mate.

 

 

 

Vim

I don’t know what on earth has happened but I’ve suddenly been overtaken by great whooshes of energy. A week ago I was planning a series of long lay ins but since Monday, I sneer at lay ins and bound out of bed as if I’ve been mainlining Red Bull.

On Monday, I woke up with the very clear notion that I wanted to enrol on a law course. Nothing major – who is going to want to take on a 58 year old pupil? But something about the Human Rights Act or Mental Capacity law would suit me fine. I put out a tweet requesting ideas and within half an hour someone had found me exactly the right course. The first pleasant surprise was that the course was written by Lucy Series. Historians may remember that it was Lucy who found us our solicitor back in 2010. Then I downloaded the course material and one of the key modules is on Neary vs Hillingdon! That’s a bit of a double edged sword. I don’t really want to fail a course over a question about myself.

On Tuesday I was back at Steven’s. I noticed that the TV remote control had unexpectedly acquired a Netflix button. One of the support workers told me he set it up during one of his shifts last week. It was another kind gesture. I must admit that I’m not that bothered about Netflix but noticed that we can now access YouTube on the telly. This will please Steven no end. So I spent the rest of Tuesday compiling a channel for him of 500 of his favourite songs. It’s a tricky one. 500 songs may overload him on first encounter because Steven’s tendency is to start at the beginning of something and not stop until he gets to the very end. Will 500 songs be too much. Trouble is, once something has been set up, for Steven it is set in stone. I couldn’t start with 100 and add another 100 in a months time. Still at least it fills the diary for the first two weeks in November.

Yesterday was my most vim inspired day yet. I woke up at 7am with the absolute certainty that I was going to join a gym. After 14 years of taking my bodybuilding very seriously, I haven’t set foot in a gym for five years. I know I can’t get back to where I was but that doesn’t matter. So, by 9am, I was enrolling at Panthers – the gym owned by the former Gladiator. It’s five minutes along the towpath from me. I didn’t do a workout yesterday because I’ve got a day with Steven today and know that after 5 years of not training, my body will go into complete shock even after a very light workout.

I got back to the flat and did the housework and in preparation for my new regime, I cleared the cupboards of all biscuits, crisps and cakes ( Got to make room for those cans of tuna and ricecakes). I had to stop myself running before I started walking again and didn’t do an online Holland and Barrett order for Creatine and Protein shakes.

To round off the day, I wrote two chapters of my new book!

Where has this come from? A week ago, in Birmingham, we walked half a mile up a moderately steep incline and I feared I might have need for an oxygen cylinder. For weeks, I’ve been declining social invitations because the lure of the sofa felt so much more attractive.

Steven often quotes Gary from Men Behaving Badly – “Bed! Beds are for sleepy people”. Over the course of three days, I’ve gone from being a sleepy person to Dale Winton on amphetamines.

Can it last?

Sexy Best Interests

On Friday I gave the Get Steven Home talk to a cohort of Best Interests Assessors at Birmingham University. It was the first day of their six day course and the organisers felt that by hearing Steven’s story on day one, it would stay with the students as they progressed through the very process driven rest of the course.

I’ve done many of these sort of events since 2011 and I’m always left with very mixed feelings. Those feelings are always the same and usually end up with me going round in circles over the same question – can the huge gap between professional and family involvement ever be bridged?

After my talk, I take questions and I’m invariably asked – “What would be the one piece of advice you would give as we approach doing a best interests decision?” I could speak for hours on the subject but usually limit myself to saying – understand the person; the way they communicate, the life they like to lead and see the human being. People nod in acknowledgement but I think I’m asking too much.

Nobody ever prepares a family for the reality that when your son or daughter reaches 18, you are suddenly ousted to the periphery of the big decisions about their life. Up until that time, you have led the way on the key decisions on things like schooling, medical treatment etc. But come 18 and you have little say in small matters like where your son or daughter is going to live. This takes some getting used to, not least because it is a completely illusory position.

All the training events I have attended make this point loud and clear. Key knowledge can be gathered from families but to the professionals, families are a small cog in the “stakeholder” machine. I remember the first time I was called a stakeholder in Steven’s life. I didn’t understand the concept. In the handout I was given titled “Key Stakeholders in the best interests decision making process”, parent was in the bottom left hand corner next to the occupational therapist. I could have my say but other, more important people would have the final say.

So I want to say to the students – cut the families some slack. They’re probably still reeling from the shock that they’ve slipped way down the hierarchical ladder over their child’s future.

I stayed for the second half of the training where some famous court judgements about best interests are discussed. The students are keen and motivated. They certainly don’t seem driven by the need for power but they’re very aware that as a BIA, they have an awful lot of clout. Even though they are only on day one and they are unconfident about the legislation, there is a palpable sense of self confidence about position. Nobody questioned their role as chief decision maker. There is an unspoken but resolute confidence in their power.

One of the case studies was ZH Vs The Metropolitan Police. This is the case of the young guy with autism & epilepsy who with three classmates was taken to “look at” Acton swimming pool. This is so typical for people with learning disabilities – to be on the outside, looking in. ZH was transfixed for 30 minutes staring at the water from the poolside. The manager panicked and called the police. Against advice from the carer, one of the police officers touched ZH’s arm which prompted him to jump into the water. It took ages to get him out and ZH ended up wet, handcuffed and shackled in the back of the police van. (The court judgment is below if you want to read the whole case).

What struck me about the discussion in the class was the confidence in opinion. I had plenty to say but my confidence deserted me in expressing my views. I know why. Steven’s story had already been lost. ZH was a case, an object under the microscope. We had easily lost ZH, the human being. There were a lot of professionals involved at Action swimming baths and in the aftermath and the sexiness of professional power had obliterated ZH and his family.

I got home from Birmingham at 9.30pm. Just after 10, the support worker who should have been doing the nightshift and the Saturday shift phoned me to say he was sick and wouldn’t be in. I spent the next hour on the phone trying to arrange cover. It wasn’t exactly a best interests decision but it was the sort of decision families and carers do 100 times each day. None of the other stakeholders from the PowerPoint presentation would ever get involved in something as mundane as sorting out staff rotas. It isn’t sexy and it doesn’t promote power. But not getting involved does promote power because it keeps us in our place in the bottom left hand corner.

We are sidelined from the important stuff and left with the mundane. Just to promote the illusion of power.

 

The ZH case:

http://www.bailii.org/ew/cases/EWHC/QB/2012/604.html