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The Bitterest Pill

One of the many scandals from last week’s GMC evidence was the admission that Dr Murphy prescribed risperidone to Connor before actually meeting him. This ain’t no Lemsip: this is one of the big boys of the psychotropic arsenal. But, as she explained, she had her pet theory about young autistic men, and when you herd a whole group of your patients into your pet theory cage, you can probably convince yourself that one pill is necessary, regardless of whether you’ve examined them or not.

Inevitably, this shameful disclosure took me back to the time Steven was first prescribed risperidone and my shame in letting it happen. Dr Murphy would have been rubbing her hands in glee because Steven was behaving in ways that fitted right into her favourite theory.

It was nearly 10 years ago. We’d been having problems getting Steven to go to school, ever since school returned that September. Come November, he wasn’t going at all. His routines were all over the place and we were reeling from the level of aggression we were facing. Nobody in health or social care would help and one Friday afternoon after the duty social worker told me the only thing we could do was to phone the police, Steven and I found ourselves sitting in the back of a police van being whisked off to the local mental health unit. He was kept there overnight, with me sleeping on the floor and the duty psychiatrist gave him a knock out dose of risperidone. She admitted it was the wrong place for him and he was discharged the following morning. Back home we both went to bed but I was rudely awakened mid afternoon by Steven hurling the alarm clock at my head. Later that day, two doctors arrived and after a 15 minute visit, Steven was given a prescription for more risperidone. And that was that for the next nine years.

The immediate impact was startling. The violence stopped and Steven took to his bed for the next six weeks, only emerging downstairs to make himself a drink. Even on Christmas Day 2007, he got up to open his presents but immediately returned to bed. My big memory was that he had an almost permanent, babyish smile. I didn’t see it for what it was – someone drugged to high heaven. And to my shame, there was a short sense of relief. After weeks of chaos and fear, I felt able to breathe again.

In February, the truth came out. As Steven wasn’t yet 18, he hadn’t been allocated a psychiatrist. (I never understood that. Until 16, you get a paediatrician. Then at 18, you get a psychiatrist. You’re not mentally ill; you just have a learning disability. It’s not surprising the psychiatrist is going to view you through a psychotic lens – that is their training). But a multi disciplinary team had kicked in and we assembled at the Civic Centre to “see where we are”. Someone asked Steven why he had been so out of sorts, to which he replied:

“Steven Neary doesn’t want to go to school anymore. Steven Neary is a man now”.

Bang! It was all there. I stupidly said to the social worker (This was the early days of our encounter with Whistler’s Mother) that we are dealing with a developmental crisis with heavy duty psychotropic medication. That was the start of me being labelled a “resistant parent”, a label I was still fighting in court two years later.

The truth is I colluded. The weight was piling on. Steven was now back out of bed and trying to create a new, post school life. His autism hadn’t gone away, so Holby City going off air whilst the Olympics were on, still produced a severe meltdown. A trip to HMV still triggered a massive sensory overload. But the edge had been taken off. And naively, that felt at the time like a small mercy.

Fast forward to 2014. During his time in the ATU, the risperidone had been increased dramatically. For containment. To enable their staff rotas to be low and cheap. Over the seven years on the drug, Steven had gained 17 stone in weight. In January 2014, he was in agony. He was in excruciating pain every time he sat down. He’d eat his tea standing up. He couldn’t bear to sit down in the car, so trips out were curtailed. He’d scream, sitting on the toilet to have a shit. We eventually discovered after going to a private clinic that his liver was failing as a result of the medication induced weight gain. But for four weeks, we were boomeranged between the GP and A&E, with neither of them that bothered. I’d been saying since the court hearing 5 years earlier that the tablets were killing Steven but I was a resistant parent and dismissed with another dietician referral. One morning in A&E, we’d been waiting nearly two hours. We hadn’t yet seen a doctor. Steven wasn’t being aggressive but was very noisy because of the pain. A nurse appeared and gave Steven a pill.

“What’s that?” I asked.

“It’s a PRN risperidone” she replied.

One of the support workers said it looked like I’d been head butted by a buffalo. I fell into a chair. We were there because Steven was being killed by a pharmaceutical and they give him more of the same to shut him up. No examination. No history taking. No conversation with Steven, me or the support workers. It was simple. Steven is learning disabled and this is how we treat learning disabled people.

A nice postscript to this story. At the weekend, one of the support workers suggested we have a day trip to the coast. I thought it was a good idea but knew that with Steven’s recent aversion to holidays (“Holidays are too busy”), we’d have to plan it carefully. Later, I was on Facebook and saw a post from Steven’s old personal trainer who now lives in Brighton. For four years, Adam put Steven through his paces, trying in vain to shift the weight caused by the risperidone. It was a fruitless task. The weight wouldn’t come off until the tablets stopped. But I thought it would be a good idea to combine a day trip to Brighton with meeting up with Adam again. I’m sure Adam will be impressed with the new, slimmer Steven and Steven can truthfully tell Adam their old catchphrase: “I’m massive fitter Adam”.

Steven is massive fitter. He can dance for longer. He can swim further. He’s been able to turn things around when most of the health and social care world were prepared to see him die. For a quiet life.

Steven took his last risperidone in June 2016. Even after the liver problem was diagnosed, the drugs are so powerful, it took two years to wean him off them. I’ve reflected a lot about “Steven Neary – the medication years” since last June. There were no benefits for Steven. Any benefits were for other people. A dowsed Steven made other people’s lives easier.

And guess what? A year after the last pill – Steven is still autistic.

Too Insignificant For The Law

Distressing. Harrowing. Fucking Shameful. There aren’t any words powerful enough to describe the experience of following George Julian’s brilliant live tweeting of the GMC hearing into Dr Valerie Murphy, the responsible clinician in charge of Connor Sparrowhawk’s care at STATT. (Responsible and Care being totally inappropriate to the evidence unfolding in Manchester). The hearing is scheduled for two weeks and I strongly suggest anyone interested in learning disability care, take a look at George’s forensic reporting @JusticeforLBGMC.

On Tuesday, Sara was called to give evidence for no other reason than for Dr M’s brief to attack her. Her evidence wasn’t needed. Her presence was an opportunity to prolong Sara’s pain. Sara has written about the day in the most moving and important blog post for many a long time.

https://mydaftlife.com/2017/08/10/writing-trauma/amp/

There is so much that could be written about the hearing. To be honest, the tweets are so relentlessly shocking, I’ve long since lost the ability to differentiate.

We’ve heard about Death by Indifference. We know that learning disabled people are seen as not quite human. But seeing it revealed in rolling black and white is deeply distressing. It’s not unusual for patients NOT to be clerked in on admission. It’s not common for families to be included in anything – history gathering; best interests; concerns. All this came from the horses mouth.

One thing that has repeatedly made my blood boil and the tears flow has been the total contempt for the law. Every now and then, Dr Murphy has been questioned about the Mental Capacity Act and her responses consistently show that she didn’t give a hoot for a piece of legislation that was introduced to protect the most vulnerable people. If she had followed the law, Connor may not have died.

There were lots of disjointed discussions about the Mental Capacity assessment. Dr Murphy’s evidence is such a shambles, I feel confident in saying that she probably didn’t carry out a capacity assessment. From the start, she assumed, even if it occurred to her at all, that Connor lacked capacity. For everything. Capacity to consent to medication? Capacity to agree to admission? A blanket decision based on contempt for her patients.

Let’s remind ourselves that the first principle of the five principles of the Mental Capacity Act states: “A person must be assumed to have capacity unless it is established otherwise”. Dr Murphy wouldn’t give her patients that respect, that legal right. From that dismissive starting position, Dr M blocked the next two principles, namely, the person must be supported in making a decision, and that people must be allowed to make unwise decisions. When your patient’s rights are so irrelevant, principles two and three don’t even appear on the radar.

The fourth principle is almost laughable to Dr M. This is the one about best interests and in the egocentric world of Dr M, only she has the expertise to make a best interests decision. Sod the collaborative process. Sod the lifelong experience of the patient’s family. But the evidence of the hearing reveals something even worse. It doesn’t look as if Dr M made a best interests decision. Or, she put the cart before the horse, and made a best interests decision and then contrived/ignored a capacity assessment to justify it.

I would stick my neck out and say that the evidence revealed today shows that she broke the law as far as the Mental Capacity Act goes. On several counts.

This doesn’t surprise me too much. A couple of years ago I did a public speaking gig at a mental health conference. My brief was to describe how in 2010, the MCA had been abused in Steven’s case but ultimately saved him. The conference room had 6 large round tables on one side of the room and the same number on the other side, with a walkway through the middle. As the room filled up, all the Psychiatrists and senior clinicians assembled on the left bank and the AMHPs, the BIAs and the ward staff sat on the right. It was the worst, scariest gig I’ve ever done. Some of the psychiatrists sat with their backs to me for the whole hour I spoke. They talked loudly amongst themselves. As I was describing Steven’s mental capacity assessment, two of them got up and went to the tea urn at the back of the room. At the break, nobody spoke to me. My spirit was around my ankles. I went out for a fag and one of the AMHPs joined me. He apologized and said their response had been quite common. There was no interest in the Mental Capacity Act at all because it’s fundamental principles were so far removed from the psychiatrists belief system.

All this shone like a rancid turd during Dr M’s evidence. At one point, she even came out with the old chestnut – the Mental Health Act trump’s the Mental Capacity Act. That is code for, “bollocks to the law. I know best”.

It’s called the Mental Capacity Act 2005. It’s now 2017. Yet you still hear deluded, self important professionals say, “we’re still bedding it in”. It’s scandalous. For the Dr Murphy’s of this world, there is no intention of bedding it in. Their patients don’t deserve that right.

One final piece of phlegm from the hearing. Shortly after Connor’s death, Dr Murphy returned to Ireland. She has her own practice and does some lecturing at UCC. In April this year, Dr Murphy delivered a presentation on the Mental Capacity Act for the students.

Click on the sixth link for the slides Dr M used –

https://www.ucc.ie/en/search/?q=Mental+capacity+act&searchFilter=website

The second slide states: “Preserve the dignity of the patient”.

Connor died.

 

Compulsive Viewing

Whilst flicking through my copy of TV Quick earlier, I noticed that there is now a whole channel devoted to all things social care. You can only receive transmission in Cromer and only then, if you dangle your TV aerial over a pregnant hamster sitting on the roof of your garden shed. But what a treat from all Cromerains.

Here is today’s schedule:

9am:             Placements Under The Hammer

9.30am:         Men Behaving Challengingly

(Gary and Tony get up to laddish high jinx in their supported living unit)

10.15am:        The Secret Person Centred Plan of Adrian Mole.

11.15am:          Deal or No Personal Budget

(Noel offers service users to double their indicative budgets or leave with nothing)

12.30pm:          The Great British Risk Assessment

2.00pm:            The Sunday Film: Four Weddings & A Care Treatment Review

4.30pm:             Ever Decreasing Circles of Support

5.00pm:             Little Hub On The Prairie

5.30pm:              Antique’s Pathway.

6.00pm:              Britain’s Got Measurable Outcomes

7.00pm:             Only Fools & Vanguards

7.30pm:              Have I Got One Page Profiles For You

8.00pm:              Tinker, Tailor, Soldier, Responsible Clinician.

9.00pm:               The Wheeltappers & Shunters Day Centre

10.00pm:             Whose Best Interests Is It Anyway?

10.30pm:              Strictly Come Safeguarding

11.30pm:              Danny Dyer’s Deadliest Change Champions.

 

Damn – Forgot My Mantra.

Yesterday, Steven’s reassessed care plan arrived. All 14 pages of it. Whenever I receive a letter from social care, I go through a short meditation to protect myself from what is to follow.

I lie down on the carpet. I close my eyes. I picture myself being fitted into a solid looking suit of armour that covers me from head to toe. I repeat the following mantra several times until I feel ready to read the correspondence:

“Do not have an emotional response to anything you’re about to read.

The document will say nothing about the real you or Steven.

Steven is the least important person in this document about him”.

It normally works a treat. But yesterday I got distracted by Steven wanting to discuss the career of The Thompson Twins and forgot to do my mantra. I was as exposed as if I’d been stark bollock naked.

One line did for me. Under the heading “Developing and maintaining family or other personal relationships – eligible need”, it stated “Steven has not formed any friendships”.

I’m not going to go into a defence of the many friendships that Steven has. The important thing is that there are several people in his life that Steven calls his friends but they didn’t count because they didn’t fit into the assessor’s classification of a friend. They very fact that it is a section in a care plan shows that there is a pre-judgment taking place.

It took me hours to calm down and then I reread my last carer’s assessment and realised the same attitude is at play there too. People I’d described in my assessment as workmates suddenly became “work colleagues”. Similarly, I remember talking to the assessor about some of the friends I’ve made online and they are classified in the final document as “online support”.

I guess it doesn’t matter if you are a person with a learning disability or their family, it’s beyond comprehension that you can live a life, and have relationships like the rest of the population. Heaven forbid I ever went on Who Wants To Be A Millionaire. Instead of phoning a friend, I’d be asked if I wanted to call someone from my circle of support.

It’s patronising, bordering on the contemptuous, nonsense.

Rant over. I’ll go and buff up my suit of armour whilst listening to Doctor Doctor.

 

Nasty Pieces of Work

It’s 7 years now since Steven was in the unit but he can still come up with a story from his time there that leaves me wanting to commit acts of unspeakable violence.

This morning we were watching a programme about Classic Number Ones. It came to Blondie and Heart of Glass. During the interview Debbie Harry and Chris Stein said that the song was “a deliberate strategy to move away from our earlier sound”.

Steven jumped off the sofa and ran into his bedroom and I could hear him repeating “deliberate” over and over to himself.

Eventually he reappeared and called me into the kitchen. When any of the support workers are around, the kitchen is Steven’s preferred place for a quiet chat with me.

He started the tale with: “P and M was in the office at M House”. (It pisses me off that I still have to adhere to the court order and not name people or places).

Then the killer line:

“That SN is always deliberate. He’s a nasty piece of work”.

This was two senior officers discussing Steven and he must have heard what they said. Or perhaps he was in the room with them and they spoke about him as if he wasn’t there.

Everything about the sentence makes me fume.

“SN” – I asked him and Steven knew that he was “SN”. It’s one thing to write about someone using their initials but to talk about him in initials? Step one of the dehumanising process.

“Deliberate” – Steven understands “deliberate” in the context of, he deliberately broke that cup. It wasn’t an accident. I’m sure P and M didn’t mean that. I’m sure they were referring to his behaviour in general. But then they spent all year trying to deny Steven his autism diagnosis.

“Nasty piece of work” – he was a distressed, vulnerable man in your care, you cunts.

In fairness, this story had more effect on me today than it did on Steven. He wasn’t upset when he told me and as soon as he’d finished the story, he was beckoning me back into the living room because by now the programme was up to The Supremes and Baby Love.

It was me that was floored. It’s me, who five hours later, can’t get the mental picture of those two people out of my head.

This is the attitude that allows people to spend years in ATUs.

This is the attitude that allows people to die preventable deaths in ATUs.

This is the attitude of an army of nasty pieces of work.

The Floor’s Gone

Yesterday Steven and I did our Sunday compilation tape. At the moment, we’re working through the alphabet and are now up to artists beginning with “S”. One of the tracks was The Style Council’s “Walls Come Tumbling Down”. For years this song has intrigued and slightly frightened Steven – what could possibly make your walls suddenly start tumbling down? His enquiry was both architectural and philosophical. To add to his angst, he knows the video to Jamaroquai’s “Virtual Insanity” where the floor is moving, which when combined with tumbling walls, gave Steven a terrible sense of existential unsafety. It took a visit to a demolition site a few years back for him to understand that sometimes, a whole house can be knocked down. But hopefully, not whilst people are in it. “Dad – the floor’s gone too”.

The floor’s gone in social care too. I was pondering the lack of a floor last night whilst reading another article about the lack of money in the system. Of course, you can’t argue against money being tight but it is always found to cover the costs of ATUs. LAs willingly pay agency fees whilst paying direct payments would be a lot cheaper. Money is scarce but the infrastructure is all but gone.

For years, our council have had a contract with a local disability charity to provide support for all things direct payments. I think the charity have been marvellous. Back in 2004, they helped us find our first direct payment worker. In 2013, they came to see me and spent hours holding my hand as I became a Personal Budget employer. And every April since, they have helped me by checking the tax and national insurance figures I’ve calculated are correct.

A few month’s back, the council decided that its service users needed more “choice” in who provides the direct payment support. They’ve now cancelled the contract with the charity and from now on, we’ll have a sum included in our Personal Budget to go off and find our own support. The charity can’t afford to exist without this regular income, so they are excluded as a potential provider and all PB recipients have got to find a new provider. I guess the council are relying on most people are feeling the same way as me – that the search for a new provider is too much of a pain in the arse and we’ll try and manage without. A floor is removed to save a few coppers.

Last week I got the increase in the Personal Budget that we’ve been waiting for since March. For the last five months, I’ve been having to pay the shortfall myself – about £105 per week. Thankfully when the payment came through, it included a chunk of arrears, so I’ve managed to claw back some of the money I’ve paid out. They make running a personal budget so relentlessly hard, whilst if it had suitable walls and floors in place, a personal budget should be a boon to everyone concerned.

I wonder what it must be like to be an old school social worker and to work in an environment that no longer has walls or floors. Credit where it’s due, we’ve had two examples of social workers operating with humanity from within that void. When my wife died in 2014, the social worker phoned me to see if I needed any extra support whilst I arranged the funeral. And within three days, a sum to pay the support workers extra hours was in the account. The same thing happened last year with Steven’s house move. The social worker knew that I’d be tied up with all the arrangements and paid four weeks additional support hours. The great thing about those two moments were that they were offered. I wouldn’t have dreamed of asking but the social workers saw a need and went beyond themselves to help out.

Perhaps it needs more people to follow Paul Weller’s lead and not take this crap and actually try changing things…..

A Letter To Sam

Once in a blue moon, something crosses your path that is so wonderful, you don’t know how you can possibly cope emotionally with its profoundness. Today was one of those days.

Having a cheeky lay in this morning, I came across the latest judgment of Justice Peter Jackson. Thankfully I didn’t have any work until noon as throughout the morning deep sobs emerged from somewhere inside me, as if my soul was doing cartwheels. I didn’t think my body could cope with being touched by such humanity, wisdom and deepest respect for and understanding of the human condition.

Jackson J had written his latest judgment in the form of a letter to Sam, the teenage boy at the heart of the case. Miraculously in doing so, Jackson J doesn’t dilute the legal argument and gives the finest example of an acute mind engaged in a profound decision making process.

Here is the judgment. It’s not long. Please read it to the very end:

http://www.bailii.org/ew/cases/EWFC/HCJ/2017/48.html

Jackson J doesn’t pull any punches. He is never sentimental. He is critical with sabre like directness.

But in the same way he achieved with Steven Neary, and Mr B (in the Wye Valley case) and the children in the Lancashire CC vs M case, and JS in the “cryonics” case, he exhibits a deeply respectful duty towards Sam.

A man, and his incredible humanity towards a boy.

 

Appendix:

The Mr B case –

http://www.bailii.org/ew/cases/EWCOP/2015/60.html

The JS case –

http://www.bailii.org/ew/cases/EWHC/Fam/2016/2859.html

The Neary case –

http://www.bailii.org/ew/cases/EWCOP/2011/1377.html

The M case –

http://www.familylaw.co.uk/news_and_comment/plain-english-judgment-gets-the-thumbs-up-and-a#.WXpcGajTW2f