Can’t remember the last time I felt as flat as I do at the moment. It just feels like the whole world of social care is so relentlessly bleak right now.
Last night, I watched back the PAC hearing about the failure of the Winterbourne View JIP to bring about any change whatever. People called to give evidence included the usual cast from the NHS England, Department of Health, CBF and Sir Stephen Bubb. It was impossible for the entire length of the hearing to get any sense at all that the witnesses were talking about, or concerned with real people. On the committee, Margaret Hodge and Ann McGuire were particularly on the ball and it became, hide behind the cushion, embarrassing. An announcement that for every seven people discharged from an inpatient setting, another six were admitted. Progress? Someone wanted to remind the panel about the “significant progress” that they’ve made but when she got down to the nitty gritty, it was all process related. Not a whiff of a human being entangled in these processes.
This morning, I had a look at the CQC report on St Andrews. This is the large, charity run organisation in Northampton that plans to open up a new “110 bed residential facility” for the learning disabled. IT is also the place that Hillingdon had on their short list of tenders when they were planning on sending Steven further away for “assessment and treatment”. The CQC reported a need for improvement in every single reporting area. Read that sentence again please. And then try and square it with the announcement from Simon Stevens at the PAC hearing that he is committed to closing all long stay institutions for the learning disabled.
Then there is the dreadful situation the Rawnsley family find themselves in after Thomas’s death last week. The Court of protection have a gagging order in place from last year, following the welfare decision to keep Thomas in the ATU where he died. One can’t help but have a sinking feeling that the only beneficiaries of the order will now be the LA, the commissioning group and the ATU, who can prevent the whole horror entering the public domain.
Again, I am bamboozled by the lack of understanding of anything about the learning disabled person. I cannot relate what I heard at the PAC hearing with the person I care for every day. It is two entirely separate planets. Bang on all you like about how the person’s challenging behaviour means that there is a need for these places and the depressing medication regime that follows. The people who really know and understand, know that this is all a scam. ATUs create the challenging behaviour. Steven was being recorded as having 30+ incidents of challenging behaviour a week in the ATU. We haven’t had anywhere near that figure in the last year at home.
I’ll end on a story of home life that won’t be heard by NHS England or the owners of St Andrews. On Monday afternoon, Steven always has a double bill of Mr Bean episodes. The following afternoon, he talks me through each scene and expects me to say who the person in the episode resembles from his primary school. The episodes last an hour – the Tuesday recap lasts two hours. With a scene that has several extras in, this process can take hours. For example, in the episode where Mr Bean gets off the train, Steven knows every single extra on the train platform:
“Dad – lady with brown frizzy hair, a green coat and black leggings is a bit like lady at Grangewood?…..”
This frazzles my head after about an hour. I can’t remember all the extras. I get them wrong and that can prompt agitation. So, for the past four weeks, I’ve been trying to phase out this Tuesday routine.
“It’s a bit boring Steve”
“It’s not boring Dad – it’s good talking”.
Not prepared to let this go, Steven has come up with a new theme for the afternoon chat. It’s still Mr Bean but we go through the whole episode and Steven points out things that are a bit naughty or dangerous or silly.
“Mr Bean – don’t shave your tongue. Might get a nasty blister on your tongue. You’ll have to go to Holby City and see Dr Elliott.”
“Mr Bean – don’t put chewing gum in your ear. You might go deaf and not hear any music of The Beautiful South any more”.
That’s the life that people in the profession never talk about, understand or factor into their processes.