Day 78: Pass it on #107days

Day 78 was adopted by Rachel Batchelor, we’ll let her introduce herself:

I’m probably best described as a ‘vocal service user’ though I have been called many other things (‘engaged and forward thinking’ was the nicest, though anything from and ‘warrior parent’ to ‘un-necessarily awkward’ via ‘overly academic’ and ‘unusually well informed’, with side orders of ‘stressed’, ‘over-complicating’ and ‘fussy’, not to mention ‘attention seeking’ and my all time favourite ‘probably bored’ (Seriously? if ONLY I had the time).

I’m  sure you get the picture, maybe its one of those nice little snap shots that so many of the pros mention. You know the kind of thing ‘I just need a snap shot of things for the file’, one taken when they flit in and out of peoples lives, creating paper work and often not much else.

One of the places I get my ‘unusually well informed’ perspective from is a long relationship with the Tizard Centre. As a result I often read blogs and articles posted on the group facebook page, a useful weather eye on what’s-what. It’s where I first read the My Daft Life blog, and the awful chain of events described there.

As has been said by many others in the past weeks, we get used to things being crap. It comes from having to hit the ground running and deal with other people’s system failures, organisational re-structuring, policy shifts that change with the wind direction, endless blah-blah chains of words which acknowledge little and promise less, ‘the usual’, all while trying to manage complexity and just get on with things in general. Even with the whole ‘used to things being crap’ as a starting point, the story of LB and his family is so shockingly dreadful that I find it hard to articulate my response. I don’t usually join protest campaigns, but this one is different.

This is what Rachel has been doing:

I offered to raise awareness of the campaign by discussing the case with 107 people and to ask each of them to discuss it with at least one other person, to pass it on. It has resulted in some complex conversations, some brief discussions, and one or two people who simply stared in disbelief that a death had occurred in specialist setting, how? HOW? could such an awful event be possible? Several people queried how it was possible, given Winterbourne View that things were still so bad (I still can’t give a coherent or printable answer to that question). One or two friends who had seen press coverage of LB’s case said that they were struck at how similar the various systems failings were to other cases they knew about, though thankfully those cases are without fatality.

All in all an interesting set of conversations which fell into two broad groups, those who felt shocked that something so appalling has happened and those who quietly reflected that the deeper shock is, the realisation that it is remarkable that it doesn’t happen more often. That gives pause for thought, doesn’t it?

I was lucky enough to raise some of the issues in the campaign with a group of students undertaking specialist training in Autism. I tried to illustrate my points with some of our own experiences, to draw a parallel with how easy it is to ignore family expertise, the corrosive effects of professional turf wars, and how much time and resource is spent getting things wrong. How much energy is spent making parents and families ‘the problem’ while over simplifying the needs of the person at the centre. One of the questions we get asked most, is ‘and what single thing do you think is most needed? hmmmm?’ to which the only polite reply has to be, ‘for people to stop thinking there is a single answer’.

If though, for the sake of argument, I could try and focus on a single ‘what is needed’ issue, here it is. Communication. Why is it that those who are willing to learn fluent jargon (specialist terms for communicating with colleagues) have no sign language or PECs (specialist skills that can be used in many circumstances). Working with a client group who are at the very least, likely to have communication difficulties would seem to call for good and useful communication skills. So, my one simple idea is could all professionals learn to recognise and accept communication differences and move on? The training exists, PECs, Signing (BSL, Maketon), Somerset Total Communication are well researched and available. How many challenging behaviours are due to communication issues and fear?

It may, also help all those involved in a persons care to LEARN TO LISTEN whether that’s to families, colleagues from other disciplines, and importantly, to the person at the centre. Fill in those partial snap-shots into something more coherent.There is no single simple solution to complex situations so at least acknowledge the complexity. However we do know what doesn’t work and we do know what does work, Jim Mansell wrote it all down in clear, informed language for all to read. So maybe, here’s another simple idea, read the Mansell report and just implement it?

We might be used to things being crap, but there is no reason why we should accept that as an unchangeable situation. Please pass it on.

Rachel also pointed out that as the D-Day commemorations happen this week it is probably as good a time as any to revisit the Universal Declaration of Human Rights, the global response to the horrors of two World Wars, the document which ultimately underpins all our equalities legislation. Rachel’s view was that more people should read it, especially Article One, which states ‘All people are born free and equal in dignity and rights’.

Right to Life

I completely agree with Rachel, but you really need to read the whole thing, and Article Three would appear quite relevant to much of social care and health support for people with learning disabilities, more on that from Lucy Series here. Now, don’t forget Rachel’s request and please Pass It On.

Day 11: A mother’s thoughts #107days

Day 11 was adopted by Shelley Mason. When asked why #JusticeforLB was important to her this was what Shelley had to say:

Justice for LB is important to me because I’m a mum and a human being and what happened to Connor should not be allowed to happen to anyone. Post Winterbourne, it’s shocking to know things are still so bad. Of the 3 families I know who have children with learning disabilities, 2 have made national headlines – my friend Mark Neary and his son Steven and now Sara and Connor. When will people with learning disabilities be treated well everywhere?

I liked that Shelley commented as a mum, and as a human being. This isn’t simply about parents and children, or mothers and sons, it’s about humans and humans, and we’re all a part of that. Anyhow, I digress. I have to admit I was delighted and relieved that Shelley had realised that it was Mother’s Day and she has tailored her post accordingly.

It is Mother’s Day in the UK. Mums all over the country will be receiving cards, hugs and kisses from their children but there is one household I know of, and God knows, there will be thousands of others, where a mum will not receive anything from one of her children. And I can’t really imagine the pain of that scenario.

Shelley introduces LB:

What can I say about Connor himself? I never met him but so wish I had. He was clearly a very funny and witty young man because many a time I’ve laughed out loud at the things his mother, Sara, has written about him. He was not a faceless boy even though we had never met in the flesh. He had depth, he had character and he had passions. Eddie Stobart, lorries, buses and the Mighty Boosh. He was such a real person to me that I took photos of lorries I saw in motorway car parks and sent them to his mother so she could pass them on. So please, before you read any further just take in this one point. Connor Sparrowhawk was a real, living, breathing, laughing young man with the rest of his life stretched out before him.

Describes his time in the unit and reflects on what has come to pass since: A catalogue of falsifications, neglect and shoddiness labelled ‘care’ followed by attempts to pass his death off as ‘natural causes’ and more wriggling than a bucket of eels.You can read Shelley’s post in its entirety here and what more she ends with a Cheesecake Truck, go check it out.

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However you spend today, thank you for taking a moment to read this, and remember LB, Sara and the many many other mothers without their children and children without their mothers today. We hope that our collective actions for #107days will prevent another family facing this pain. Thank you.