I seem to have spent a lot of time in hospitals recently. Between various family members being unwell, a couple of operations and my step son dying, I’ve seen much too much of the workings of the NHS from the wrong kind of perspective. And last week there was more of it, Mikey was going in for day surgery to have some work done on his teeth. The last time he’d had anything done he’d been a child, there had been problems with the pre-med and in the end, we’d had to physically restrain him to get the mask on his face. That was then, and I think it was fair to say that neither I, nor his mum were looking forward to going through that again, especially considering the fact that he’s a couple of feet taller now and an awful lot stronger.
It was in the run up to this and whilst working on the Rightfullives exhibition that NHS England announced that learning disability and autism was going to be one of the priorities in its 10 year plan. It’s great news but it kind of washed over me a bit. Getting people out of inpatient hospitals had been a priority once, as have a whole range of other things like learning from deaths, patient safety and Duty of Candour. Talking of which I wrote to NHS England back in May asking for the minutes of the Transforming Care Delivery Board, but nobody bothered to reply. And for those of you who don’t know, the Transforming Care Delivery Board is (or was) the board set up to have oversight of the delivery of Transforming Care. It appears to have stopped meeting a while ago – which is one of the reasons I wanted the minutes.
Anyway, I guess the reason I’m not overwhelmed by the announcement is simply that we’ve been here before. Politicians make promises, senior civil servants draft plans and less senior civil servants, and practitioners try to implement them, in partnership with “service users” or “people” as we are sometimes known. As we know the promises of politicians aren’t always what they should be and traditionally it has been the job of senior civil servants to turn those promises into some kind of workable plan. And even if they’ve known that the politician’s promises can’t be delivered with the resources that the politician has made available – the plan has nevertheless been drafted (preferably after appropriate amounts of consultation, participation and collaboration have taken place) and handed over to less senior civil servants and practitioners to implement. And as the less senior civil servants have struggled to deliver the plan that can’t actually be delivered, the management of the gap between the promises of politicians and deliverability of plans has been turned into a new art form.
Government departments invest increasing amounts of time and energy into controlling the narrative around the services that are provided under their direction. Good practice, expectation management and policy announcements themselves are used to shape peoples’ perception of what is being done for a particular community. If we take the recent bad publicity that NHS England has had in the media – ranging from the stories of people in inpatient hospitals, inquiries into the deaths of individuals and the publication of data on health inequality and premature death. NHS England barely responded to the publication of the Learning Disabilities Mortality Review and in relation to the poor progress of Transforming Care Ray James National Director of Learning Disability at NHSE has stated that if the 16% reduction in inpatient beds had happened elsewhere in the NHS “people would be trying to learn from it”. This kind of expectation management has been accompanied by the talking up of pockets of good practice like STOMP, the increasing employment of people with learning disabilities at NHSE and Care and Treatment Reviews.
In truth we have little idea of the reality of how things are for people with learning disabilities or autism in our communities, even though there is much that NHSE knows but does not share. As families we have personal evidence of cuts to services – we know how bad things have to get before we qualify for support and we know how rarely people with learning disabilities are provided with the support they need inorder to be able to live ordinary lives, in their own homes in their own communities. But we also know that there are things that make a difference. There are organisations and practitioners who go the extra mile to make things work despite being given plans that don’t stack up and budgets that are self evidently simply not enough. We know that these people, working in our local communities, somehow take those plans and the policies and do their very best to make reasonable adjustments in unreasonable circumstances. Which was something I was reminded of last week when Mikey went in to have day surgery on his teeth.
As I said we weren’t looking forward to it. Would we be able to get him to agree to each step of the procedure? Would we be given the time and space to allow him to overcome his anxiety and ultimately would we need to restrain him inorder to get the work done. I won’t go into the details of what happened, but I will say that the clinicians involved were all able to develop a rapport with Mikey. They adapted the way in which they approached the procedure so that each step was more likely to be consented to and less likely to cause distress. Overall it was extremely successful, and it worked despite the fact that Eastbourne DGH has only just come out of special measures and despite the fact that the hospital is still in financial special measures. Somewhere along the line someone made the decision that despite the cost, despite the loss to their “productivity”, they would make enough experienced and well trained staff available and they would give them enough time and space so that Mikey’s teeth could be sorted out in a way that would cause him the least distress. And just to give you some indication of how successful they were, his memory of the day was teasing the nurses and getting hiccups before the operation.
As NHS England draws up its plans to make learning disability and autism a priority for the next 10 years, I hope they recognise that it isn’t just about changing culture and the sharing of good practice. It is also about having a plan that is coherent and funded and transparent; so that we all know who is doing what and how they are doing it. A plan that allows managers to give practitioners the time and space they need inorder to be able to include people with learning disabilities and autism – in a way that promotes long-term access to healthcare and that minimises distress. Above all I hope that the political commitment to this plan is genuine and they aren’t just using it to distract us all from the bad press they’ve been getting; and that in 10 years’ time I’m not looking back at the outcomes of this particular policy initiative and wondering what went wrong and how we could have let ourselves get taken in – yet again.