Shaking up the system inertia

First blog here in an age, so happy new year everyone! This week has seen the publication of two reports into the appalling standards of care for learning disabled people in the UK. The National Audit Office published their investigation into the utter failure to transform care, as promised following the abuse at Winterbourne View being exposed by Panorama back in 2011. You can get a link to the NAO report on the JusticeforLB blog, where we also published our own audit of activity over the last 11 months.

Following the Verita report into Connor’s death finding it entirely preventable (he died because of poor standards of care and poor leadership), refusing to be silenced or take no for an answer, we have relentlessly sought to actually improve care for learning disabled people. Not just talk about it, not plan it, not seek resources and funding for it, but just get on with it. There are many days when Sara and I have questioned if we’re making any difference at all, wary of getting sucked into the system inertia that weighs like a heavy invisible blanket on so many providing ‘care’ for learning disabled people, quickly smothering any radical or new thought. People tell us we’re making an impact, we met this week to discuss the feedback to the first draft of the LBBill and there was stacks of it, between it and/or the promised Green Paper, I’m optimistic some improvements can be made.

I’m still not sure, never sure though, that it’s enough.

Alicia Wood from H&SA blogged yesterday comparing the NAO report and the JusticeforLB report. Her blog led to conversations on twitter this morning about how we can actually change the system; whether existing solutions are enough, or indeed whether the existing system and those engaged with it (read propping it up) are part of the problem.

Personally I’m so fed up with seeing the CEO of Mencap (for one example) publicly ringing her hands about how difficult things are (on Twitter, on Newsnight or in The Telegraph), while simultaneously receiving funds to change this sort of thing. A quick squizz at Mencap’s annual report 2013-14 shows £7million was spent last year ‘engaging and influencing key stakeholders‘ yet no results are offered for the return on this investment. Sure the annual report includes some statistics of numbers of people attending events and grandiose stories of their role supporting bereaved parents to share their pain….but so what? Where has it got? What difference does it make?

Next week the Public Accounts Committee will hear evidence from Stephen Bubb (a man appointed because he wasn’t an expert – some thoughts on that here), a CEO of a learning disability charity (Challenging Behaviour Foundation) that trades on it’s niche knowledge (no impetus to make this a mainstream issue) and a guy that used to work for Mencap and now advises the same charity, CBF. They’ll also hear from professionals employed to lead this diabolical system from the Department of Health and NHS England. Sadly the closest learning disabled people are likely to get to that committee is the stock photo used on the website.

I’m a relentless optimist so we’ll see what comes out of next week, but asking those leading a system so badly (as documented in your own report), what they’re going to do to improve things, four years after they promised and failed to improve things, feels a bit circular to say the least. Especially when it’s clear (see Alicia’s blog post mentioned above) that the challenges the NAO have unearthed were clear at the beginning, and shared with colleagues responsible.

So, what solution am I offering for shaking up the inertia? Well there are loads of ways it could be done, read the JusticeforLB audit report for what we’ve tried so far (we being the royal, collective, amazingly crowdsourced, everyone equal, everyone welcome JusticeforLB campaign). Last week we received some criticism from two disabled people that we hadn’t involved a learning disabled person in a presentation we gave. I don’t want to get into that here now, but I think the audit report stands for itself in how actively involved learning disabled people have been throughout the campaign, but I still know that we could do more.

The person who had the most impact in the Newsnight report this week (34mins), wasn’t Sara and Rich (although I thought they were amazing), it certainly wasn’t Jan the Mencap CEO, for me it was Kevin from My Life My Choice who talked about feeding his cat and having some grub. You know, normal stuff like you or I do. Not concordats, not strategic plans, not poor data, not lack of money, just keeping it simple and keeping it real, a life like anyone else’s. A chance for Newsnight viewers to relate to Kevin, as someone like them, not as someone who is sooooo extraordinary he needs a charitable spokesperson to talk for him.

I’m not suggesting for a minute that we should leave things to learning disabled people to sort out themselves, although at this stage performance so far has been so dire maybe they’d make more progress. I am suggesting that the media should have more access to learning disabled people and that we should hear from them routinely. Foundation for People with Learning Disabilities has a campaign about this:

I’m talking about unfettered access as well, not just the ones who speak on message and protect the charities own agendas. We were contacted and invited to respond to the NAO report by several media teams in the run up to last week. Time restrictions meant that Newsnight was a yes, the others were a no, but what became clear was that the media aren’t easily able to access learning disabled people or their families, without attempts at upwardly managing the message by those within the system who are already complicit in the lack of progress. I’ve heard from two different sources that Mencap refused to introduce them to people to speak to, unless there was a slot for their media spokesperson. The people who shared this have no reason to lie, I wasn’t involved in the discussion directly so have not seen it with my own eyes/ears, but it certainly didn’t come as a surprise. This isn’t just about Mencap either (although Sara has brilliantly analysed why they’re failing people by their media responses), it’s bigger than them.

It’s time learning disabled people were more routinely involved in (read: got to make) decisions about their lives, in speaking about their lives, and in bringing about this long, long overdue change.