I used to play a silly game in my head. I haven’t done it for years for obvious reasons. A song would come on the radio. Perhaps Going Underground. I would go, “Ooh that’s 18 years since that was released”. I’d splash around in the nostalgia of 18 years ago for a few seconds. Then I would try and imagine what my life would be like 18 years hence. It was a playful distraction. I can’t do it anymore. I’m not going to hear Karma Chameleon and go “Ooh that’s 35 years since that was released” and then imagine 35 years into the future when I’ll be 94.
Time has become both all important but meaningless to me at the moment. I’m stuck in a place where it is very important to me but completely irrelevant to my outside world. Three examples:
I’m still waiting for the results of the CT scan. Nothing has happened unless I chase it up. I’m now rationing my phone calls. I can’t phone everyday: it’s too time and energy consuming. Six weeks of nothing much.
After my first visit to the GP, I decided, to use an old fashioned phrase, to tend to my affairs. One of the most important things seemed to me to get my bank accounts changed to joint accounts with my sister. That way, if I am dying, Steven’s shopping will still get done and the support workers will still be paid. Three and a half weeks, and three visits to the bank and it still isn’t sorted. In all, I’ve probably spent six hours on the phone to the Nationwide call centre. This week, I was told there had been a “glitch” with the “identity processing” so back to the branch we went. They don’t do anything in branch anymore, it’s just a physical call centre, so I’m still relying on someone, behind the scenes somewhere to pull their finger out.
And finally, I received a letter that revealed after 3 years and 4 months, the Community DoLS application still hasn’t been submitted to court. Steven’s had 4 social workers in that time. I couldn’t give a monkeys about the Community DoLS but it is demanded that I engage with it. The council don’t issue stamp addressed envelopes anymore so I had to hand deliver it to the civic centre. You are forced to engage or else you become the problematic parent.
Yesterday I was following the live tweeting of NHS Ability’s launch of their 10 year #LTPconversations. I’m not sure what LTP stands for – someone suggested Long Term Plan. I have an awful fear it stands for Listening To People. Whatever it means, this is the NHS’s latest blast of hot air to make people with autism and/or learning disabilities one of their top priorities over the next 10 years. And to be the ball rolling, they are holding several LTP conversations with a range of stakeholders. It was very depressing reading. As Julie Newcombe pointed out, as Transforming Care whimpers out in March 2019, is LTP what is replacing it? And 10 years seems an awfully long time. I can’t remember what was number one in the hit parade 10 years ago.
One person’s life is another person’s job. It’s stupid to expect an employee at NHS Ability to see any sense of urgency. I hope I’m not sounding self entitled but I would like someone at the gastroenterology unit to recognise I’m experiencing physical pain and the mental pain of not knowing is pretty tricky to manage too. I suspect my expectations are too high. Why should a call centre operator, following a script, have the first clue about showing a bit of empathy? Again, I’m hoisted by my own silly expectations.
Fast forwarding 35 years on, Boy George will probably be pushing up the daisies. I’ll have fallen off my perch. And from what we know from the Leder report, Steven will probably be discussing Countdown in heaven with Freddie Mercury and Dusty Springfield. But I’ll bet my last Toffo, that in 35 years time, there’ll be the latest NHS think-tank/concordat/Bubble breakfast club starting a new conversation about something we’ve had all the answers to for many years.
I can’t promise that Steven’s Community DoLS will have the stamp of the court in 35 years time though. Can you be assessed for capacity when you’re dead?