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.
Love, Belief and Balls 
The only comfort one could draw is that Margaret Hodge tends to raise loudly unacceptable truths – and there have been too many of them. It is the real stories which get the point home to MPs it seems to me but as long as they can avoid talking about real people they can somehow fool themselves into thinking it’s just a figure not a person — or worse once again try to make the fault the person rather than the system. If we could only ask people to imagine how they would feel being put away in this way – or their nearest and dearest? And how much worse would it be when you don’t have the same resources to deal with it let alone understand it? How do we get them to understand we’re talking about people, with the same feelings as them, but so much less power to change things for themselves? It is depressing but the most hopeful thing is the groundswell across the country from people, families and allies to have things change. We need to make politicians understand we won’t lie down and try to use the election to get the general public to understand what’s going on in their name must not be tolerated. Everyone must support the #LBBill, the Justice together campaign following Thomas’ death to try to ensure support and resources for families isolated in their fights http://bringingustogether.org.uk/justice-together-new-project-help-families-crisis/ and the Learning Disability Alliance’s efforts to raise the wider issues and bring us all together behind ensuring people exercise their vote and politicians hear just what has been happening in areas given the cuts. (If people haven’t filled out the questionnaire today is the last day – so I hope people’s voices will be heard – http://learningdisabilityalliance.org/quality-checking-government/) They may not be listening but it gets harder the louder our voices are and there is an election coming!
Reblogged this on rosemarytrustam and commented:
The only comfort one could draw is that Margaret Hodge tends to raise loudly unacceptable truths – and there have been too many of them. It is the real stories which get the point home to MPs it seems to me but as long as they can avoid talking about real people they can somehow fool themselves into thinking it’s just a figure not a person — or worse once again try to make the fault the person rather than the system. If we could only ask people to imagine how they would feel being put away in this way – or their nearest and dearest? And how much worse would it be when you don’t have the same resources to deal with it let alone understand it? How do we get them to understand we’re talking about people, with the same feelings as them, but so much less power to change things for themselves? It is depressing but the most hopeful thing is the groundswell across the country from people, families and allies to have things change. We need to make politicians understand we won’t lie down and try to use the election to get the general public to understand what’s going on in their name must not be tolerated. Everyone must support the #LBBill, the Justice together campaign following Thomas’ death to try to ensure support and resources for families isolated in their fights http://bringingustogether.org.uk/justice-together-new-project-help-families-crisis/ and the Learning Disability Alliance’s efforts to raise the wider issues and bring us all together behind ensuring people exercise their vote and politicians hear just what has been happening in areas given the cuts. (If people haven’t filled out the questionnaire today is the last day – so I hope people’s voices will be heard – http://learningdisabilityalliance.org/quality-checking-government/) They may not be listening but it gets harder the louder our voices are and there is an election coming!
Oh Lord, just to your last point,
My son also knows all the extras in his fave DVDs and videos and I am expect to as well or he gets agitated. Parents of autistic people could make a fortune on very specific quiz shows.Bet you don’t know the episode of Brum in which Amy Winehouse appears..
Yes the committee was beyond depressing mostly because of the ‘Black is white’ responses, in which to state your aims/vision is held to cancel out the petty facts of what is actually happening.
(“You crashed the plane! “Ah, we are committed to the highest standards of air safety.” “You robbed a bank!” ” I am working towards a zero crime rate.”)
It occurs to me that its very hard to make a case for someone getting worse in a unit because we run into the “escalation before extinction” argument.That is when you set new limits on a behavior the person doing it will do it more at first. If every time my son hits me I give him a chocolate bar (believe me, I’ve tried everything) he will keep hitting me. If I stop providing the bar he’ll hit me a hell of a lot more.
OK. if new limits are set the behavior will get worse. This can provide an excuse. Jim has 10 violent episodes a week and at the unit he has 20. “Well, escalation before extinction, you would expect that. “You’d also expect it if he is distressed.That’s how we are got.
Nobody should be an inpatient without clear and short term goals. By far in the vast majority of cases the person should stay at home with (an adequate number !) of visiting clinicians unless home can’t manage.
The word ‘gagging order’ is a very distressing concept. I hope the judges that sign these orders, will one day have to stand in front of St.Peter and explain themselves. And I hope instead of going to heaven/hell, that instead they are reincarnated and come back as parents and have autistic children. That would be justice served.
Anyways, enogh of that, I sound like a crazy person.
I look forward to one dag being quized on TV-show extras. My son is still in school, so normally needs lots of time relaxing with his iPad after school, so not too much TV watching at the moment.
Unfortunately, he is becoming obsessed with Minecraft, which he expects me to love too (I dont!).