Yesterday was a very confusing day if you happen to be the parent of someone with autism and learning disabilities. I had quite a busy day but several times popped into social media to follow three events that were unfolding. I went through a kaleidoscope of feelings from irritation, frustration, hope to deep sadness. 24 hours on and those same feelings are still sitting firmly in my melting pot.
It was Mental Capacity Action Day and a number of professional groups had joined up to focus on Principle Three – Unwise Decisions. Subsequently, Twitter was awash with photos of people holding up cards with an unwise decision they had made at some point in their lives. There were some very funny ones and it was good to see people able to send themselves up. But there was something about the exercise that took me back to last year’s NHS Q Initiative and the “writing on your underpants” exercise. A jolly jape, possibly raising awareness of something much bigger but how does one move from underpants (or unwise decisions cards) on to the more important stuff? I didn’t see one card that had the unwise decision, “I didn’t authorise additional support for the family during the crisis, so the dude ended up in an ATU”. Or, “I didn’t challenge the contrivance of a mental health section, so the dude remained in an ATU for six years”. I know. Call me a party pooper but I can’t see how the jump is made from an awareness game into something more valuable for the people the MCA is intended to be for.
At the same time, a safeguarding conference was taking place on the Isle of Wight. Two of the guest speakers were Sara Ryan and Graham Enderby. There was life tweeting of the event. I’ve had this conversation with both Sara and Graham before but it left me questioning again, how does one make a leap from hearing a horror story at a conference to changing professional practice. Does hearing a family member tell their story cut the mustard in terms of raising awareness of the MCA. I sometimes wonder, especially with Graham’s and my story whether the audience are cushioned by the fact that the story has a happy ending. Hopefully without sounding too arrogant, I think both Graham and I are good speakers – we can take people on an emotional journey and people will rage and laugh and cry. But the stories are in the past and that creates a protective distance. I hate to think it but from time to time, I wonder if it is the same with Sara’s story too. I wonder as more horror happens post inquest and Mazars, another cushion appears. The bad guys become so obvious and the focus that we can forget the obvious question for the audience of professionals – what the bloody hell was Connor doing in an ATU? Where was his Mental Capacity Act? Where were his Human Rights? I hope this isn’t too jaundiced but as I say, it pops into my head every now and again. Whatever you hear in Harry’s, Steven’s or Connor’s stories, the narrative is awash with unwise decisions that wouldn’t make their way onto a held up card.
And then the killer. Eve Smith got back from her son Jack’s review meeting and posted on Facebook that his Mental health section has been extended for another two months. No matter that he has been having weekend home visits for several months now without problem (apart from the distress of going back to the ATU). The section has been extended because there is nowhere for him to go. Whilst the CCG are footing the bill for the ATU, the LA are dragging their feet about setting up a home support package. The plan (!) is that Jack will get his own flat but another of the delays is that they are unable to find suitable providers trained in autism. (There’s a simple answer to that one – get some people who are able to be Jack trained). So, in the meantime, the section is renewed with no concrete plan for the next two months, increasing the possibility that in two months time, it will be extended again. Later in the evening, Eve posted about her nightly phone call from Jack. To deal with his distress over the bad news, the staff had given him extra medication. Medication that leaves him disorientated, confused and incontinent. Where is Jack’s MCA?
A couple of months ago, I posted the idea about assembling 3500 Ninjas to try and spring the 3500+ people from ATU purgatory. Ninjas with the MCA and Human Rights embedded into their capes. The outcome reminded of that episode of The Good Life when they collected their first harvest. The episode starts with Tom and Barbara in the pub and all the pub regulars pledging their support to help gather the harvest. By the end of the episode, Tom has done his back in and the garden is a quagmire after a bad storm. All the pledgers have disappeared leaving only Jerry with a broken leg and Margo in a yellow windsheeter pitching in. I got 82 Ninja pledges. That was a good start. The MCA in action. But nothing since. Dreadful films like the one Leo Andrade took of her two sons having a cuddle with the iron gate of an ATU between them don’t seem to be enough to rattle the necessary cages. I don’t know what it takes.
Then again, I am open to the probability that the Ninja plan may have just been a shit idea.
I don’t know how to join the dots. I don’t know how to move from people holding up cards about the unwiseness of having a fourth pint in the pub to getting Stephen Andrade’s human rights respected. I’m beginning to think it may be impossible.
In the meantime, I’ll hold up another card. This card has a photo of Jack Smith at his home visit last weekend enjoying a cooked breakfast:
And just ask again. What can the MCA Awareness day do for Jack?
Just heard from Jack’s mother that she’s been phoned by the Unit who have changed their “care plan” in response to Jack’s distress over yesterday’s decision. For the foreseeable future, all home leave has been cancelled.
I ask again. Where is Jack’s MCA?