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Every Picture Tells A Story

I mentioned on social media the other day that I have brought Steven a massive monster DVD package for his birthday. It is a 6 disc box set put together by the Arts & Humanities Council and features their 200 best UK music videos of all time.

Adopting a slightly smaller scale, Steven and I have just put together a list of our top 12 music videos of all time. They are in no particular order although you can have a wager at the end which is Steven’s favourite and which is mine. Some of the songs won’t feature on our top favourite songs list of all time but we like the videos.

Off we go.

“Madonna. We don’t play with knives. This is your final warning”

“Oh Gordon Bennett. Chris Martin, you don’t drive your car backwards. Take your silly head off”

“Paul Simon – that man’s got your voice in his mouth. Ask him to give it back nicely”

This next video scares the shit out of me but Steven likes it because it’s got lots of “cheeky monkeys” in it

“Jackki Abbott’s playing hide and seek in the cupboard. Like Steven Neary when he was in Gilbert Best’s class”

After Steven saw this video it made such an impression on him that we had to sing it each time we went in a public toilet. I raised a safeguarding alert and we don’t do that any more:

“Bono. We don’t play at airports. Do you want the airplane to knock your head off?”

“Keep going Fran. Do your exercising and you’ll be all fitter like Steven Neary”

“Want to see Norman Cook’s face. can’t see Norman Cook’s face”

“Siobhan want’s to take John up the big stairs to heaven. Like Grisabella Cat in Cats”

“Richard Ashcroft – we don’t walk on cars. You might fall off the roof and lorry might run you over”

“Tom. Bowls are for goldfish. Not for men’s heads”


The Unexpected Crisis

I find it very difficult to make any sense of another depressing week on Planet Social Care. This week we heard the heartbreaking news that Eden Norris has been readmitted to an ATU, just three months after he was discharged from an eight year detention. Apparently there had been some “difficulties” over the past couple of weeks and an “increase in challenging behaviour” which led to the provider agency pulling out of the contract with no notice.

I read a call earlier for no criticism to be attached to any of the various agencies/bodies involved in Eden’s care in case that deters future prospective suppliers. I hope this post isn’t perceived as criticism, although I do believe that accountability is important if any lessons are to be learned from this sorry episode. I can’t imagine how Eden must be feeling right now after being wrenched away from his home just as he was building a new life for himself. It’s vital that each player in Eden’s life is transparent and frank about the mistakes that have been made and what is needed to effect a successful return for Eden to his home. It would be totally unfair if the burden is shifted into Eden’s shoulders and the all too common explanation of “complex needs” being used to avoid accountability.

I can’t help wondering if we’re encountering another strand of the “not quite human” shadow that plagues much of learning disability service delivery. I always feel that the psychological and emotional impact of being institutionalised is given very little weight and worse, is often dismissed as a consequence entirely. We readily accept the difficulties the problems servicemen and women experience after being demobbed. We can understand and are reasonably tolerant to people’s difficulties after being released from prison. We even devote airtime and newspaper inches to the plight of celebrities adjusting to “real life” after spending three weeks in the jungle. But learning disabled are meant to come out of an ATU without any scars from the experience. It took us four years after Steven came home to stop him asking permission to use the toilet, seeking authority to get a drink from the fridge and requesting others’ agreement to put a DVD on. These are all minor examples of institutionalism but they are illustrative that a different set of “rules” exist in your home than in a hospital and after a time away, they have to be relearned. You can imagine the tension that occurs when someone whose every move and action is controlled for several years is suddenly presented with an independent, person centred approach to living their life.

The other question I have is where is the crisis management? I’m not undermining my argument in the previous paragraph with that question. I would say the effects of being institutionalised are dead normal considering the life lived in an ATU. I’m framing it as a “crisis” because that’s how the professionals would frame it. Considering the pertinent articles in the Human Rights Act and the Mental Capacity Act insists on the “least restrictive option” for someone’s care, you’d have thought that the last resort would be readmission. Sometimes that simply means throwing in extra resources (people, money, time etc) until the crisis has passed. I want to give a massive acknowledgement of how brilliant Hillingdon have been at this, twice in the past four years. In 2014, the day after Julie died, the social worker phoned me to ask if I needed some extra support in the next few weeks. I didn’t have to ask: she knew there would be practical things to attend to at a time of great emotional upset. The same thing happened when Steven moved house in 2016. I invited the new social worker to see the state of the place and she asked what extra support I needed for the period up to the move. She knew I was needed at the new house and wouldn’t be able to fulfill my usual caring committments. I wouldn’t have classified either of these events as a “crisis” but they were both big life events that needed additional help to manage. Why couldn’t the same, kind offer have been afforded to Eden?

I suspect that there were no extra resources to throw in because there weren’t sufficient resources in the first place. How many times have we heard about a care package collapsing because of insufficient resources being made available? We did some ad-hoc research for 7 Days of Action and over half the people who contributed told how their son or daughter ended up in ATU because of flaws in the support provision or the support provider suddenly pulling out of the contract. I think provider agencies in their desperation to win a contract overreach themselves or make promises they can’t keep. Years ago, in the first year after Steven left school we had two horrid experiences of this. The first agency the LA commissioned turned out to be the same agency the council used to supply the staff at the ATU. We didn’t know that at the time obviously. It was only during the internal investigation into the assault on Steven by one of the staff that we discovered that the agency didn’t actually have a license to provide domiciliary care. They were dropped by the LA overnight and two months later we were allocated a new agency. Two weeks into the new arrangement we were told by the agency that Steven had been banned from the swimming baths. I phoned the manager of the pool who said that Steven hadn’t been banned but the staff at the pool were concerned because all the support workers turned out to be non swimmers and were leaving Steven on his own in the water. Once the truth was out, the agency pulled out of the contract, again with no notice. They knew about Steven’s swimming when they agreed the contract but didn’t think it was important enough to employ people who could swim.

Supporting someone with autism and/or a learning disability isn’t rocket science. It’s framed as “complex” for two reasons: it inflates the fees that agencies can charge and it avoids accountability by putting all the spotlight on the person being supported. People like Eden who have been discharged from long spells in an institution need their experience validated and respected. They don’t warrant blame for other people’s shortcomings. They need people who can give them the space and the humanity to work through their trauma whilst trying to construct a new life for themselves. Readmitting the person to the very place that caused the trauma is cruel beyond words. And so very, very unnecessary.

I hope Eden comes through this. I’ve never met him but I’ve heard from others what a fine, stoic chap he is. To be honest I have more faith in Eden’s resilience than I have in the State’s ability to get it right and do the right thing by him. They haven’t made a very good start. I want someone, anyone involved in Eden’s care to recognise that he is human and that his human rights are as valuable and important as anyone else’s.

Mr Neary’s One Page Profile

This morning I read a very sad tweet from Dr Shibley Rahman. His mother is a patient at the Royal Free hospital and Dr Shibley has been wondering why the staff keep trying to engage his mother in conversations that she has no interest in. All became clear when he noticed that they had pinned the wrong person’s one page profile to the foot of her bed.

I have a love/hate relationship with the one page profile. I can see its benefit but to reduce someone’s life to one page reduces me to tears. Especially because they are often compiled by complete strangers.

It set me off into another morbid fantasy. I couldn’t bear to write a one page profile for Steven – that would be far too sad. So, here is mine.

The year is 2039.  I am 80. I have been in a maximum security twilight home for the last five years:

One Page Profile: Mark Neary

Mr Neary likes conversations about his past. To assist him, and staff, the following information and pictures will be useful to engage him in his social interaction programme:

21149939_10154676641377274_8959540532804174531_nDuring his childhood, Mr Neary spent many happy hours at Southall open air swimming baths. It was bulldozed to the ground in 1982:

dartsThe best live concert Mr Neary ever saw was by Darts at the Hammersmith Odeon. He still knows all the words to Duke of Earl:

1929923_15317802273_2828_nFor many years Mr Neary was a regular gym goer. Obviously delusional & a sign if his current condition, he still harbours dreams of achieving the 100kg bench press:

caulicheese_lgMr Neary cannot abide cauliflower cheese. Under no circumstances must he be fed this.

20170720_105909Mr Neary had a son called Stefan. Since Mr Neary deteriorated 10 years ago, Stefan has been living in a service in Northampton. It has been decided that it is in both their best interests that contact has ceased.

Mr Neary will try to engage staff with conversations about The Jam, Leeds United Football Club, Pear drops, Fawlty T

We Are Golden

I’m feeling terribly nervous about the final episode of Endeavour next Sunday. All the clues are pointing to a fatal end for Fred Thursday. Last week ended with his soldier son saluting him and today’s finished with Thursday laying his hand on Morse’s shoulder as he left the pub.

I’ve never had a work relationship like Morse and Thursday. I can’t imagine Steven ever saluting me and as he doesn’t really like being touched, a hug or a hand is a rare event.

But then I thought about this afternoon. Steven was looking for one of his compilation DVDs – “The dvd with Mika with his pants on”.

Before I continue with the story, you might want a quick look at the said video. 30 seconds will do. It’s not exactly a classic:

I found it and it prompted the following story from Steven:

“Mika! Don’t dance about with just your pants on.

You might get a chill Mika.

What would Adam Lewis say to you Mika?

Adam would say – You won’t get fitter if you’ve got a nasty chill.

Put some clothes on Mika and sort yourself out”.

(For background, Adam Lewis is Steven’s old personal trainer. Adam liked Mika’s first big hit, Grace Kelly. Adam’s mantra at the start of every session was “Let’s get going Steven and get you fitter.”)

I love Steven’s flying imagination. I love how he can pull several threads of his life together to create a funny story. And he knows he is creating a funny narrative because he’s smiling as he tells the story. I love how he takes it upon himself to give Mika the benefit of his wisdom.

He doesn’t have those conversations with anyone else. I guess with me, he knows that I will know all the reference points and that enables his imagination to take flight.

These are our Thursday and Morse moments.

They’re Golden.

Human Rights & St Andrews

I heard a very distressing story yesterday. A young woman with learning disabilities is currently being held at St Andrews. As you know, St Andrews is in Northampton. The woman is from Wales. The family have been prevented from seeing her since November. She is allowed telephone contact but the staff have banned her from speaking in Welsh to her family.

I tweeted about this earlier and many people, rightly, saw it as a Human Rights issue. Others despairingly asked “How do they get away with it?”

I think the answer to that question lies in their award winning programme for improved behaviour. Last time I wrote about St Andrews a member of staff proudly sent me a copy of their programme to tell me I’d got the regime all wrong. I dug it out today and I’ve reproduced it below.

Each patient is allocated a Level between 1 and 6. Level 1 is the most serious with the most restrictions on the patient’s human rights. Level 6 is the level for patients to aspire to. Speaking to families with people detained at St Andrews, moving up the levels is as precarious as wandering around a land mine site.  You could have worked your way up to level 4 and then one false move and you’re back to Level 1 again. There’s no planning to it: it’s like a daily game of snakes and ladders with your liberty.

It makes total sense when you think about the years that patients are detained in St Andrews. They have to keep those £12k per week beds filled and this is the perfect model to achieve that. It’s a model that is completely random and dependent on the whims of the staff. If Steven was there he would find it utterly confusing and distressing and would seldom move out of Level 1 in his confusion and distress. I imagine it would be the same for many people with autism and/or learning disabilities.

Anyway, here are the Levels. I’ve only included 1 to 3 and Level 6 but you’ll get the picture.

I wonder what level the young woman from Wales is on?





Dr Valerie Murphy – No Likey Likey

This week saw the conclusion into the Fitness to Practice Tribunal for Dr Valerie Murphy, the psychiatrist and lead clinician responsible for the “care” of Connor Sparrowhawk whilst he was in the STATT Unit. The determination was reached last November: this week’s hearing was to apply the sanction.

Following the live tweeting of the three days was too hideous for words. But the worst was kept until last. Dr Murphy escaped with a year’s suspension (She has given up her license in the UK and now works in Cork, so heaven only knows whether the sanction will have any effect). The Tribunal statement included a paragraph on “mitigating circumstances” and had the outrageous sentence “in the difficult world of adult learning difficulties”. To read such institutional disablism from a medical tribunal is truly shocking.

Much has been uncovered, written about and discussed since these proceedings began but this morning, Sara Ryan posted the following tweet:

Put aside the system failures. Put aside the need for lessons to be learned and a culture change. Put aside the litany of gross failings that the tribunal found in Dr Murphy’s practice.

Just supposing the core of this horror is that Dr Murphy had taken a dislike to Sara. Connor died because the responsible clinician didn’t like his mother.

For what it is worth, I think Sara is right. I think a handsome, talented, unique young man died because of the lead officers vanity and ego. Most of the evidence at the tribunal when stripped right back has rested on her narcissistic arrogance. Most of the behaviour of her counsel stemmed from her impossible ego.

There’s lots of other evidence to suggest that this happens. I would suggest you dip into some of the discussions about the case of Dr Bawa Garba on social media. I’m not going to get into the rights and wrongs of the case but the behaviour of some of the medical people towards the non medics has been appalling. Sneered at; mocked, attacked are just some of the things I have witnessed and been subjected to. I would suggest that these behaviours stem from a dislike of anyone from outside the profession who has the audacity to challenge the expert.

Much was made in Steven’s court case about the infamous email from the social worker to several of the MDT.

“There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s, however I want Steven to remain at [the support unit]. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven.”

What the court judgement didn’t make clear was what led to her email. In fact, it was a reply to one that I sent to the social worker and the Unit manager the day before. I reproduce it below and hope the content is self explanatory:

“Hi All. I’ve just come back from the gym with Steven and the support workers. I couldn’t help but notice that the issue about Steven’s ties, cords and laces going missing is still happening. His trainers had no laces in and whenever he kicked the ball, they flew off. Also, the elastic from his tracksuit bottoms had been removed and every time he did some short sprints, his tracksuit ended up around his ankles. I know that **(Another resident) has the tendency to go into the laundry room and remove these items and I’m not knocking him at all. For me, this is a matter of Steven’s dignity. And also it’s becoming quite expensive to keep replacing all these clothes that have become useless……”

It’s not aggressive is it? But it cut the social worker’s fragile ego. Her response was totally inappropriate to my enquiry and demonstrates the real loathing she felt towards me.

If it was just a battle between the parent and the medic, that would be one thing. But as numerous stories reveal, there is a consequence to the person being cared for. Revenge on the parent can be played out on the child. Steven’s fate was a year’s detention: Connor’s was unbearably worse. Dr Murphy was blinded by her feelings towards Sara and it led to total indifference towards her patient. (I’m sure the Freudians among you, may suggest something even worse).

One thing I never understand in the world of social care is where is the clinical supervision? In my professional counselling world, I have clinical supervision once a fortnight. It has many purposes but one of the most important ones is to look at where my stuff may be intruding into the therapeutic work. On a few occasions my supervisor has said to me “Mark – this is your shit”. It is deeply uncomfortable but invaluable and a real necessity.  It is about serving the client. From the evidence of Dr Murphy’s tribunal and the ragbag collection of character witnesses she produced it was clear that, even six years on, she receives none (or little) clinical supervision. I suspect that sometimes you reach such a height in your field that supervision is considered beneath you. Or you are left to organise your own supervision and that would have been very low down Dr Murphy’s list of priorities.

The conduct and professional behaviour of Dr Murphy will continue to attract much analysis and discussion.

I suggest that it would be foolish to overlook the obvious. Dr Murphy’s conduct and professional judgement was impaired because she hated Sara Ryan.

Connor died because of a fragile, out of control ego.

When the world of adult social care is populated by professionals like this, this is what  makes that world “difficult”. Not the Connors.


Two Years On: Another Fuck You to Personal Budget Experts

I’m ground down. Ground down by Groundhog Day.

Two years ago, I got caught up in a deeply threatening battle with HMRC over the support workers’ tax and national insurance. I became quite ill with the fear that their increasingly menacing letters triggered in me. Here’s my blogpost from May 2016 on the subject. (The update at the bottom of the post is hugely significant to the current story):

Two years on, exactly the same thing is happening again. On 3rd February, I received a letter from HMRC Debt Management informing me that I owed £600+ for the financial year 2016/17. I know I don’t. I wrote them an immediate reply. Adopting a belt and braces approach due to my fear someone might spring a “We never received your letter” tactic, I phoned them on 6th February. I spent 55 minutes on the phone to a Debt Management officer who said that she was unable to check the figures or tell me how they had been worked out but she could assure me that her figures were correct. Eventually, I persuaded her to transfer me to someone in the Employers Helpline team. This conversation took 45 minutes. He could have been the same bloke I talked to back in 2016. He was adamant that the quarterly return I submitted for the third quarter was a monthly figure so they were justified in estimating a figure for the next three months and it is this estimate that makes up the “outstanding debt”. I lost count of the number of times I said to him that I submitted quarterly returns because HMRC sent me quarterly returns. In the end, and my voice shaking with a mix of anger and tears, I pleaded with him to put me through to someone in the Carers Team. Not many of the staff in HMRC know that a dedicated Carers team exist. He didn’t. I couldn’t take any more that day. After all, it had been nearly two hours and I had got nowhere.

The next day, I tried again. Another 40 minutes. “Sorry, we can’t put you through directly to the Carers Team. I can take your details and someone will call you back within 72 hours”. That’s the service level agreement. You have to sit with the stress for a further 72 hours.

Luckily, someone did phone me back the following afternoon and the relief was instant. She’d checked all my returns for the past three years and everything was up to date. Nothing outstanding to pay. Oh, and by the way, did I know about the Employers Allowance that was introduced in April 2015. Looking at my records I had never claimed it and in fact, we owe you £5000. “It may take a bit of time but you should receive a cheque for £5000 by the Spring”.

Today, I got back to Steven’s and there is another Saturday letter waiting for me. From the HMRC Debt Management team. It starts “We’re disappointed that you’ve failed to respond to our previous requests…..”It ends, “If you don’t pay now, we can enforce debts by seizing your assets and selling them by public auction as the law allows. We can charge you fees for this….”

All those calls. The letter. The energy, time and cost has counted for nothing. Back to square one.

This week I saw another of those Twitter conversations about the beauty of personal budgets. I don’t join in with them anymore. I get wound up by the way the “experts” turn the sort of situations I’ve described in this post into an academic debate. Or I get told that there’s nothing wrong with the theory of Personal Budgets, it’s the execution that causes the problems. As if that matters a toss.

I’ve typed a reply to today’s letter. I’m gearing myself up to spending another two hours on the phone on Monday. And I’m completely on edge. I know it will get sorted (In 2016, they sent me a cheque for £50 to apologise for the inconvenience). Until Monday, this will bite away at my brain.

Because I know that whatever positive response I get next week, that won’e be the end of it. It is more than likely that these letters will turn up once a fortnight until the Spring.