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.
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.
The Last Bath
It’s been a tough Winter.