Justice for Connor Sparrowhawk and the “difficult” field of learning disability.

I’ve not blogged about Connor Sparrowhawk for a good while now; not because I haven’t wanted to, but simply because Sara has enough on her plate without having to put up with my occasionally left field take on the world. But the judgement in the case against Dr Valerie Murphy was profoundly important not just for Connor’s family, but for all people with learning disabilities, and everybody who has anything to do with their lives. It reflects much of what is wrong with the care that people currently receive, and it is likely to reinforce many of the prejudices that shape the kind of medical care and support that our loved ones receive.

It is often said that the way in which we talk about something defines it; but sometimes it’s also about what that language gives us permission to be able to do or not do, and for me one of the most disturbing aspects of this judgement lies in use of the phrase “the difficult field of learning disability”, which was used to justify passing what most people seem to think is a lenient sanction. It’s fair to say that the social media response to the use of the phrase has been one of outrage. People have pointed out that it can be used to undermine the right of people with learning disabilities to good quality healthcare, and they are right, it can be and undoubtedly is. But the problem is that whilst people are right to argue that the use of the phrase undermines the rights of people with learning disability, whether we like it or not the world of learning disability can be difficult. The issue is how we respond to that difficulty.

I knew a young man who was nonverbal; who would sometimes express anger and distress by punching himself in the side of the head. It always had a cause, and was never done without reason, and the reasons were varied. He did it when he had a tooth ache, he would do it if he had indigestion or some other kind of tummy problem. He might sometimes do it if you changed his routine or if you tried to get him to do something that he didn’t want to do. He also did it if somebody he was close to didn’t turn up when he expected them to. Or if somebody he loved was no longer a part of his life. The challenge in trying to get him to stop, was working out what it was that was annoying or upsetting him. Had somebody made him wear a top he didn’t want to wear. Had they made him get out of the bath before he was ready to get out? Had he eaten too much cheese? Was he constipated? Had he fallen in love with somebody who worked with him. Was it pain or some other underlying medical issue.

Sometimes learning disability can be a difficult field and whether or not a person is able to speak for themselves makes little difference. The thing that separates the good practitioner from the poor is how they respond to that complexity. In order to understand a person and make a judgement about their care and support, they need to know them and if they do not have the time to get to know them, they have to draw on the knowledge and expertise of the people who know them best, which will most often be their family. I have seen it done incredibly well by practitioners with very little time and incredibly badly by those with no excuse.

In most forms of residential or hospital setting, practitioners do have the time to get to know people. They have the opportunity to work with families and to develop an insight into an individual’s life and stories. They have the time to work out what the key questions are – and sometimes those questions really aren’t that difficult – had he eaten too much cheese? Is he in love? The challenge is in knowing which questions to ask and if you don’t take the time to get to know the person in your care and if you don’t fully involve the people who know a person best in their care and support, then you are never going to know what those questions are. So maybe the mitigating phrase should have been – learning disability is a difficult field if you don’t get the fundamentals right – but I guess that wouldn’t have been quite as helpful in mitigating Dr Murphy’s sanction.

So, is the sanction lenient?

I suspect it is. Valerie Murphy didn’t get the fundamentals right. She spent little time with Connor, she didn’t respond appropriately to key incidents and self-evidently failed to draw on Sara’s knowledge and understanding of her son. The quality of her practice didn’t make learning disability a difficult field, it made it almost impossible for her to do her job with any hope of a positive outcome for Connor. These factors alone probably should have led to a significantly greater sanction.

But I suspect even that would fail to be any kind of justice for Connor. For any kind of suspension to be appropriate then all of the failings and shortcomings would need to have been born out of medical error. Genuine mistakes on the part of a well-meaning but (like the rest of us) ultimately flawed human being. But anybody who has followed George Julian’s live tweeting will know that much of the defence was too often about what Connor’s mum may or may not have done or said or blogged. As if, in Dr Murphy’s mind, Sara was somehow responsible for all the flaws and all the shortcomings of Connor’s care. And it is therefore difficult not to have the impression that Sara’s knowledge, experience and insight was deliberately cast aside as an act of petty vengeance on the part of a clinician with too much power and too little professionalism. And if this was the case then no kind of suspension or removal from medical register will give Connor the justice that he deserves.

We will probably never know if Valerie Murphy’s practice was as flawed as I suspect it might have been, only she can answer that question of herself.

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The Last Bath

It’s been a tough Winter.
Last October my main concern was an upcoming minor op, setting up My Own Front Door and the struggle I was having in getting data about Transforming Care out of NHS England. The operation went ok but the recovery was slow and no doubt exacerbated by the intricacies of how the NHS now funds day surgery; another small example of the way in which the internal market impacts upon the quality of the care that people receive. But, uncomfortable as it was sleeping in a chair for three weeks and wandering around the house with a John Wayne like gait, the operation wasn’t the thing that would make this Winter what it would become.
Nor was it the challenge of setting up My Own Front Door and getting data out of NHS England, although the latter has been very insightful. Put simply the idea behind My Own Front Door is to create a web-platform where people and organisations could come together to share the work they are doing to support the right of people with learning disabilities to live in their own communities. And I guess because it was a good idea we managed to secure a provisional offer of some funding from NHS England. However, as anybody who has worked for a government agency will know any offer of funding usually implicitly shapes the things that you feel able to do and say. It’s never done explicitly but you find yourself steering away from certain topics because it might offend or be problematic for one of the project’s partners. So, whilst working on My Own Front Door, I put in a Freedom of Information request to NHS England for information relating to Transforming Care; in part because I wanted the information but also because I was unsure of their commitment to openness and transparency.
It took months to get any information at all. At first, they asked me to wait until the plans and final details were ready, which they promised would be in a couple of weeks, so I agreed to it. But it kept getting delayed. Then in the end they sent me some partial data on a pdf (difficult to work with) rather than on a spreadsheet. But it didn’t provide the information I asked for and the information that they did provide was very carefully presented. I began working on it back in December a few weeks after my step-son Adam got a chest infection. We had no idea where things would go from there.
Adam was born with a range of disabilities and health problems. He’d spent the first months of his life in hospital and had undergone major surgery a number of times, including open heart surgery when he was eleven. He would grow up with a range of diagnoses and impairments, Di George Syndrome, Charge Syndrome, deafblind, scoliosis, severely learning disabled, and at times his behaviour could be described as tricky, difficult to interpret or “challenging”. But these are just labels for us, they aren’t him.
The chest infection had started in mid-November and by the end of the month things seemed to be improving, but at the beginning of December his heart began to weaken and he began to retain fluid. We’d be in and out of Eastbourne DGH for much of December. At one moment desperate, at another hopeful that things were improving. Early in January Adam would travel up to St Thomas’ where they worked closely with us to put together a drug regime that would make him more comfortable and at least lengthen his life. We left London hopeful that the regime that everybody had put so much work and effort into would make a difference.
It didn’t.
On the 17th of January, he took another turn for the worse. His breathing became more laboured, his face creased with pain, his care closely supervised by his GP and monitored by his CHC case manager. The hope had gone. But we still didn’t realise how close we were to the end.
On the Friday morning his home rang, and we rushed in: his mum, his sister, me and later his cousin. He was crouched on his bed, struggling to keep himself in the position in which he found it easiest to breath, fighting to keep himself awake. The GP got there a short while after we did. He felt we should try something else we all agreed. The memory of that afternoon is a stream of images and moments.
At some point, I think it must have been at around three in the afternoon he signed bath and tried to drag himself out of bed. We helped him into his wheelchair, into the bathroom and into his bath. It’s hard to explain how important his bath routine was to Adam. It marked the end of his day. It was the place where he was always most at ease, and on this day, it seemed to mark the end of his struggle. I can see him there still, his little head surrounded by bubbles as he rested against the step in the bath. We got him out, helped him get dried and dressed, but not before he’d insisted we get another top because he didn’t like to one we’d picked out for him. He seemed calmer after that.
Soon after he would pass from us.
That was a month ago now and this week we are going to start work again on My Own Front Door and the data I’d got from NHS England. We’d already come to the conclusion that we shouldn’t take the funding from NHS England because of the struggle to get the information I’d asked for. But somehow now our independence seems all the more important. As we have found out through this Winter, the NHS and social care sector is full of people doing remarkable work, often for little more than the minimum wage. But Adam’s life has other chapters that tell of how badly things can be done and how appalling people can be. But that is for another day.
For now I will hold the memory of that last day and walk with it into tomorrow.