Some blog posts are hard to write – this is one of them. It is also my 200th post on this blog. For the first time, I’m writing, not to tell a story or to make a point, but to sort my head out.
At the time of writing “Pathways and Cul-De-Sacs” on Saturday, I was disillusioned and desperate. Learning that the NHS Trust’s learning disability nurse only works one day a week and comparing that to the spin put on her role by the Trust was the final straw. How could all those medical people involved in Steven’s care be so dis-interested in his pain? Why didn’t I know that a learning disability nurse would be such tokenism and another cul-de-sac? Why are all the caring systems such utter shite?
In my meditations over the past couple of months, the same message keeps coming up – Immediacy. You must act now. Not just about Steven’s health but about everything. I can’t remember another time in my life when there has been such a sense of urgency to act – to take charge. It also feels that if I don’t heed the message, it will soon be too late.
With all these thoughts swimming into my consciousness, I arranged for Steven to go to a private clinic on Sunday. The attitude couldn’t have been more different to what we’ve encountered at the GP surgery and at A&E. In the space of four hours, Steven was examined, had blood and urine tests and a CAT scan. It was through the latter, that after four weeks of awful pain, we finally got a diagnosis in one day. It would have taken at least another month of agony & pain induced meltdowns if we’d continued down the road we’d been sent down.
The diagnosis is Stage 2 non-alcoholic steatotapatitis (NASH) – fat deposits on the liver that can cause aching pain in the abdomen and relentless tiredness. Exactly what Steven has been trying to tell everyone for the last four weeks. The big problem is that it can’t receive direct treatment – it is caused by excess weight and will only really correct itself with weight loss. He can have pain relief in the meantime.
And at this point, I’m back in court in 2010/11 and having to deal with Hillingdon’s “belief” that I don’t take food issues seriously. And I get scared because my imagination pictures it all happening again. And if I start to push what I truly believe that it’s not fundamentally a food issue but an anti-psychotic medication issue, then it becomes a safeguarding issue for someone who thinks that they know better.
And then I go back to, “why the fuck is he on medication in the first place?” How can his weight double in six years of being on tablets and nobody sees the link? The latest psychiatrist report showed no signs of any mental health issue, yet here we are, shovelling anti psychotic medication into him. And I also go back to his time in the Unit and the lies they told to justify why Steven lost some weight whilst there. Steven has told me – because he often went days without any food at all.
And then I remember the meditation. Immediacy. Act now. And I separate who is useful to Steven and who is useless and ruthlessly remove the useless. There is too much at stake to be faffing around with the system. I’ve been doing the same thing for months with the housing situation and the care package, this is just another version of the same. Only this is a matter of life and death. The psychiatrist who agreed with Hillingdon’s plan to send Steven away to Wales retired in early 2012 and since then, Steven has seen a series of “keep taking the tablets” locums. No use whatsoever when you’re dealing with a life threatening condition. Having lost trust in the NHS Trust, I went elsewhere on Sunday and immediately a light began to shine. I said to a friend on Monday: “I wish I could find a psychiatrist who specialises in autism”. Ten minutes later I suddenly realised that I knew one – the psychiatrist who was appointed as the court expert back in 2010. I managed to track him down and spoke to his secretary. Hopefully he will be prepared to take us on and I can get a second opinion about the connection between the medication and the weight gain that doesn’t ignore the bleeding obvious.
I took a couple of hours out on Monday night. It wasn’t a respite night but I really needed some breathing space and asked the support worker to stay on late. I went into Uxbridge for something to eat and decided to drop the clinic’s report into the GP surgery. The clinic had also given me a CD of the scan. It was infuriating. The receptionist kept giggling about the slowness of their new computer system and she wasn’t sure if the message she was sending through to the doctor was getting through. I said, “But this report is about Steven possibly dying” but that didn’t register. Whilst there, I also asked how the blood tests that Steven had recently didn’t show this up. It turned out that the bloods he had taken at the hospital hadn’t been passed on to the GP. Or perhaps they had and their sodding new computer system had lost them in a haemotology void somewhere.
The time is now. When I came up for air, I hope I started to see things a lot clearer. The systems that are meant to help us and serve us are dead. I’ve written about this before but in the past, I’ve meant they’re spiritually and ethically dead. Now it feels a lot more literal. There is no effective life force in them. And if I engage with a dead system, then Steven might be dead.