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You Spin Me Round Like An Arsehole

The following is a press release from CrapCare Foundation Trust which runs 1029 learning disability services in Newport Pagnellshire. This release follows a CQC inspection of all the Trust’s services which resulted in an overall Inadequate rating. Of the 12 assessed areas, 10 were rated as inadequate, 1 requires improvement and 1 was rated as good.

Over to CrapCare for their statement of the inspection:

Good Performance From A Great, Well Led Trust 

We are delighted to announce the results of the recent inspection of our learning disability services. The report demonstrates our continued drive towards excellence and it was particularly satisfying to receive a “Good” rating for our innovative procurement of brillo pads.

We welcome the enforcement notice awarded by the CQC and will continue to work closely with all our partners at maintaining and building on our successes. Important lessons have been learned from the inspection that will inform our strategic thinking for the next decade. We accept the challenges of providing exceptional care at a time of huge challenge for social care and any perceived shortcomings of the Trust are not our fault at all but down to the patients and Bonnie Tyler.

Each of the Trusts 44 Majestums will do the hucklebuck lead the leadership programme for change in an exciting and leading fashion. In viralling our leadership quality we are confident of many many awards coming our way in the Autumn award ceremonies.

We will continue to put our….erm….what are they called….oh yes…..service users at the heart of our business stratagem and commit to ensuring that the users of our excellent, award winning services continue to receive an excellent brand of brillo pad.

Transparency continues to be our flagship value and transparently our transparence shines a beacon for transparential engagement.

Our award winning management team have already met to absorb and cross communicate the report in total candour and will be shortly be announcing the exciting project that we have called “Plan B” where should the CQC decide to press charges, we will capitalise on this unique business opportunity and convert 721 of our learning disability assets into modern pig farms.

CrapCare remains committed to providing services to our commissioning partners in the modern way with second to none leadership on which we have built our reputation.

Paraphrasing Princess Di

Yesterday, I read an observation from the ever thought provoking Neil Crowther which said that we should move away from talking about and thinking about the idea of “the cared for and the carer”. Neil argued that these terms are unhelpful and possibly cement the problems that the disability world tries to change.

I believe Neil has a point. Seeing someone as being ” cared for” sadly seems to play into the idea of not being quite human. Its the same with the elderly. Whenever a care home or dementia story emerges, there is usually “a different species” feel to how the person is presented. And carers are regularly patronized and presented as “heroes”, poor and weary. It all sustains a narrative that doesn’t seem to do much to change the status quo.

Let me digress. Several years ago, I did a course to become a couples counsellor. It didn’t last long. I tried to practice what I was learning and took on some real life couples but each time it was like entering a war zone. I do remember the tutor saying in the first lesson – ” There are three people in the client chair. Partner 1. Partner 2. And the relationship, the family”. It had a ring of Princess Diana’s famous quote but it stuck with me.

Because that’s what we’re talking about. People. Relationships. Families. Normal stuff. Any other label distances and sets up a “different from the rest of us” dynamic that is not useful.

One example of this is – Steven has a FACs assessment: I have a carers assessment. The two assessments have never joined. We are seen as two separate entities. Which of course we are but that overlooks the relationship between us, our family. And we are just two. What about those families with two parents and a couple of siblings. The “cared for” is identified. A “carer” is chosen. And the other people don’t come into the equation at all. The third (and fourth and fifth etc etc) are part of the relationship and need to come into the picture.

One (of probably many) nonsense of this status quo framing is respite. Family member 1 has a disability that needs constant support. Family member 2 asks for some respite help. What happens next? Family member 1 is taken away from their home for a day (or week, or month, or forever). How does that work? Family member 1 didn’t ask for respite but they are the person who has their life turned upside down. Perhaps NHS England should look at turning ATUs into places that the other people in the relationship can go to for their respite. Rebadge Assessment & Treatment into Respite Units. Mini Premier Inns. Might be useful. This may be a fanciful idea but it is all set up by the system’s refusal to see people as people. In connected relationships.

I don’t think I’ve ever used the word “Carer” when asked to describe my relationship with Steven. I’m his Dad. Isn’t that enough? When we sit down this afternoon for our regular Tuesday afternoon Gladiators viewing, am I caring for Steven? I see it as Son and Dad hanging out together. It happens because I care about him not that I’m caring for him. And I don’t think Steven ever thinks of himself as “the cared for”. He is Steven Neary. He understands relationships. He knows his support workers are ” at work” but calls them his friends. I know this won’t be popular but I cringe sometimes at the way that unpaid/family carers talk about the paid carers in their family’s life. They can be, at best, dismissive but at worst, move into downright hostility. Steven’s support workers are not part of our family but they are part of our family dynamic. so, I would argue that anyone who has a paid carer coming into their home has an additional element to their family “system”.

The language of relationships is really important. And I think Neil is right – the current language frames an image that has little bearing on most people’s reality. And gives little acknowledgement of the “players” in the relationship as being people. Regular human beings.

An Apology

I wanted to make a public apology for a public mistake.

On Saturday I published a post on this blog about one of our support worker’s experience working in supported living. Yesterday, I removed the post.

I did not feel like I was breaching the support worker’s confidentiality at the time because, (a) he asked me to write the post, and (b) I showed him what I had written before publishing. I respected his request that he remained anonymous in the post as well as the name of the place and the area it is located. I now see that as it wasn’t “my” story, I shouldn’t have published it. I stupidly and irresponsibly overlooked the emotional impact of the story and saw it primarily as a concern for #LBBill to try and stop the practice of turning care homes into supported living homes.

After publishing, what happened next, took me completely by surprise. Very quickly, in every media I published, the comments focused on the support worker rather than what I saw naively as the core of the story. The comments turned to what action the support worker has/will be taking about reporting the place. I replied on each site/thread along the lines that I trusted him and was leaving it up to him to decide what action to take. This only seemed to stoke the fire and the comments became more critical of the support worker. I realized that if I tried to explain further about his situation, I would run the risk of compromising his anonymity. It was foolish of me not to have thought that through before publishing. Obviously I have no control over which direction a post goes in. Nor would I want to. But I could see that I was making a difficult situation for the support worker much much worse by my unprofessionalism. At that point, I decided to remove the post.

The second factor that arose that I hadn’t accounted for was that people started to express they felt responsible for taking follow up action and reporting the home. This arose out of the assumption that neither the worker, nor I, were going to do anything. I truly regret if my lack of thought burdened people with a sense of responsibility. The matter has been reported and I don’t want anyone to feel under pressure.

Even if my intentions were pure, it was wrong of me to use the experience of the people in the home and the support worker as a discussion point for LBBill.

Please accept my deepest apologies for that.

Now That’s What I Call Munby Disc 1 Track 5

Been feeling as perky as a 1960s piglet today.

I was awoken at 5am after a lovely respite evening at the flat by two swans outside my bedroom window giving a mash up of Blue Suede Shoes & I Know Him So Well. Then lazed around watching an episode of Morse whilst finishing off my previous night’s Terry’s chocolate orange. Home by 10am.

And then along came this: http://www.judiciary.gov.uk/wp-content/uploads/2015/02/re-a-child-2.pdf – the latest in a long line of judgements from Justice Munby on the role of the State in social care decision making. There’s a running Twitter joke about how some of Munby’s greatest quotes should form a chart busting “Now That’s What I Call Munby”. Today’s track may not be the classic opening track but it certainly deserves high ranking on Disc One. The case involves Darlington council wanting to place a young boy for adoption, ignoring the request of the boy’s father to care for him. Munby describes a catalogue of bad judgement, prejudice and piss poor practice. Please read the whole judgement – it’s a real page turner.

The penultimate two paragraphs are incredible:

It will be noticed that I have, quite deliberately, not identified either SW1 or SW2 or TM, though their employer has, equally deliberately, been named. There is, in principle, every reason why public authorities and their employees should be named, not least when there have been failings as serious as those chronicled here. But in the case of local authorities there is a problem which has to be acknowledged.

Ultimate responsibility for such failings often lies much higher up the hierarchy, with those who, if experience is anything to go by, are almost invariably completely invisible in court. The present case is a good example. Only SW1, SW2 and TM were exposed to the forensic process, although much of the responsibility for what I have had to catalogue undoubtedly lies with other, more senior, figures. Why, to take her as an example, should the hapless SW1 be exposed to public criticism and run the risk of being scapegoated when, as it might be thought, anonymous and unidentified senior management should never have put someone so inexperienced in charge of such a demanding case. And why should the social workers SW1, SW2 and TM be pilloried when the legal department, which reviewed and presumably passed the exceedingly unsatisfactory assessments, remains, like senior management, anonymous beneath the radar? It is Darlington Borough Council and its senior management that are to blame, not only SW1, SW2 and TM. It would be unjust to SW1, SW2 and TM to name and shame them when others are not similarly exposed”.

For weeks and months, there has been on-going discussion about the hand wringing attitude of Ministers, NHS England, Department of Health etc etc etc etc etc when it comes to bringing about change in social care. They all claim a powerlessness. There is nothing they can do. Deaths/abuse/contempt for the law happens in a variety of social care settings and the top bods maintain they are hamstrung by systems. Sir James Munby has driven a stake through the heart of the matter. As long as the commissioners and Panels can hide behind a shield of invisibility there will be no change. They hold the power but no responsibility or accountability. No point going after the providers – as long as there is money to be made from the vulnerable, they’ll be sticking around. It’s the anonymous and the unidentified that need to be on the radar.

What’s the chances of Justice Munby becoming Patron/Mascot for the #LBBill? He’s just kicked the door wide open.

Are You Being Served?

I’ve probably written about this before. I have written about this before. Today, my attention turns again to the social care “Fairer charging policy”.

This morning, I got a letter from the council notifying me that Steven’s contribution to his care package is overdue. I’ve been waiting for an up to date invoice but that’s another matter. As usual, the language was quite threatening. Completely unnecessary for a first reminder. But I guess it’s quite common now for State letters to adopt the tone and language of the debt recovery company. Even when it’s just a first notification letter.

Steven is levied a weekly charge for “non residential care services”. I’m not sure what that phrase means, so I looked it up on the council’s website. There is a 48 paragraph booklet on the “Fairer Charging Policy” but one paragraph that is missing is the one that tells you what exactly you are being charged for. Lots of warnings about what will happen if you don’t pay. Lots of instructions on how to pay. But nothing on what the charge actually covers.

I tried to work out what “services” the council actually provides now that Steven receives a personal budget. They pay the budget onto the prepaid card once a month. They micro manage to a ridiculous degree how I use the card. They audit the account from time to time. They conduct a fairer access to care services assessment once a year. That’s it. Steven doesn’t use one of the few remaining day centres. He doesn’t got to their respite home. We don’t ask for the input of the positive behaviour team, the learning disability psychologist, the speech therapist or the occupational therapist. There are no other services.

So, is providing the personal budget a service?  Is money a service? Since we’ve had the personal budget, my workload has shot up. You could argue I am providing them with a service. They don’t have to deal with support agencies anymore. There is no commissioning. They don’t have to do contracts or payrolls. I do all that now. that they chose to carry out such microscopic surveillance is their choice – I didn’t ask for that service (if that’s what it is).

Surely, a personal budget is a sum of money paid to fulfil a statutory duty to meet an assessed need. Is there any other payment made by the State that requires the recipient to pay for receiving that payment?

Imagine I hire a decorator to paint my bedroom. I pay him for the Paint and equipment he will need. But then he introduces “personalisation decorating” and hands over the paint brushes and paint to me and tells me to get on with it. Will he still be able to charge me for his service?

There is no point in challenging this. Even if someone accepted that the fairer charging policy for a non service isn’t right, it would only get rebadged as something else and charges would be reintroduced. And as a few of us were discussing on Twitter earlier, there is always a price to pay for challenging the king’s new clothes.

Different Words

“Dad”

“Yes Steve”

“It’s Enrique Dad”

“Enrique mate?”

“Steven Neary’s got an Enrique song with different words”.

“Let’s hear it then Steve”

I will be your hero baby

I will kiss away the pain

I will stand by you forever

You can take my Bernard Cribbens away

Worlds Apart

Can’t remember the last time I felt as flat as I do at the moment. It just feels like the whole world of social care is so relentlessly bleak right now.

Last night, I watched back the PAC hearing about the failure of the Winterbourne View JIP to bring about any change whatever. People called to give evidence included the usual cast from the NHS England, Department of Health, CBF and Sir Stephen Bubb. It was impossible for the entire length of the hearing to get any sense at all that the witnesses were talking about, or concerned with real people. On the committee, Margaret Hodge and Ann McGuire were particularly on the ball and it became, hide behind the cushion, embarrassing. An announcement that for every seven people discharged from an inpatient setting, another six were admitted. Progress? Someone wanted to remind the panel about the “significant progress” that they’ve made but when she got down to the nitty gritty, it was all process related. Not a whiff of a human being entangled in these processes.

This morning, I had a look at the CQC report on St Andrews. This is the large, charity run organisation in Northampton that plans to open up a new “110 bed residential facility” for the learning disabled. IT is also the place that Hillingdon had on their short list of tenders when they were planning on sending Steven further away for “assessment and treatment”. The CQC reported a need for improvement in every single reporting area. Read that sentence again please. And then try and square it with the announcement from Simon Stevens at the PAC hearing that he is committed to closing all long stay institutions for the learning disabled.

Then there is the dreadful situation the Rawnsley family find themselves in after Thomas’s death last week. The Court of protection have a gagging order in place from last year, following the welfare decision to keep Thomas in the ATU where he died. One can’t help but have a sinking feeling that the only beneficiaries of the order will now be the LA, the commissioning group and the ATU, who can prevent the whole horror entering the public domain.

Again, I am bamboozled by the lack of understanding of anything about the learning disabled person. I cannot relate what I heard at the PAC hearing with the person I care for every day. It is two entirely separate planets. Bang on all you like about how the person’s challenging behaviour means that there is a need for these places and the depressing medication regime that follows. The people who really know and understand, know that this is all a scam. ATUs create the challenging behaviour. Steven was being recorded as having 30+ incidents of challenging behaviour a week in the ATU. We haven’t had anywhere near that figure in the last year at home.

I’ll end on a story of home life that won’t be heard by NHS England or the owners of St Andrews. On Monday afternoon, Steven always has a double bill of Mr Bean episodes. The following afternoon, he talks me through each scene and expects me to say who the person in the episode resembles from his primary school. The episodes last an hour – the Tuesday recap lasts two hours. With a scene that has several extras in, this process can take hours. For example, in the episode where Mr Bean gets off the train, Steven knows every single extra on the train platform:

“Dad – lady with brown frizzy hair, a green coat and black leggings is a bit like lady at Grangewood?…..”

This frazzles my head after about an hour. I can’t remember all the extras. I get them wrong and that can prompt agitation. So, for the past four weeks, I’ve been trying to phase out this Tuesday routine.

“It’s a bit boring Steve”

“It’s not boring Dad – it’s good talking”.

Not prepared to let this go, Steven has come up with a new theme for the afternoon chat. It’s still Mr Bean but we go through the whole episode and Steven points out things that are a bit naughty or dangerous or silly.

“Mr Bean – don’t shave your tongue. Might get a nasty blister on your tongue. You’ll have to go to Holby City and see Dr Elliott.”

“Mr Bean – don’t put chewing gum in your ear. You might go deaf and not hear any music of The Beautiful South any more”.

That’s the life that people in the profession never talk about, understand or factor into their processes.

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