‘No more talking: we want action!’

I’m just back from holiday and full of cold, so it was both an exciting and head-spinning day on Wednesday, which started with talking to a scarily large audience at a Nesta event (People Helping People – see previous blog) about Shared Lives and social action. At lunchtime I met up with a group of people with learning disabilities from CHANGE (www.change-people.org.uk) who had come to London to share the views from the Voices Choices conference in June. At that event, 100 people with learning disabilities had come together from all over the country, to talk about how to close down institutions for people with learning disabilities an ensure that there are no more scandals like Winterbourne View.

We were preparing for a summit later in the afternoon, hosted by Care Minister Norman Lamb and involving impressive array of leaders, including: NHS England CEO Simon Stevens; Chief Inspector of adult social care, Andrea Sutcliffe; CEO of ACEVO, Sir Stephen Bubb; Chief Nursing Officer, Jane Cummings; Co-chair of the Winterbourne Assurance Group, Gavin Harding MBE and Karen Flood from the National Forum for People with Learning Disabilities.

You can see some of the discussion and pictures from the summit in the #voiceschoices Twitter stream and you can find the four sets of proposals produced by people with learning disabilities on CHANGE’s website. It’s worth reading: Simon Stevens said that in four months of his new job it was the clearest, punchiest policy document he has yet read. Perhaps we should produce all policy documents in easy read first – it’s a great test of whether you really understand what you’re writing and reading….

The session started with some incredibly moving personal experiences from people with learning disabilities. The accounts of poor care, rape, workplace bullying and oppressively inaccessible services were, as one participant put it, shocking but not surprising. But as Karen Flood eloquently pointed out, what was moving was not just the suffering, but how each individual had turned their distressing experience into a powerful force for change. Each ended their presentation with ‘don’t’ call me a service user, I am a professional just like you’ and they were now in roles, including paid jobs, in which they trained people, made decisions and spoke at events here and abroad. Sean from CHANGE and others said that having a paid job meant he had the status and power which professionals had, rather than always being the only unpaid volunteer in a room full of professionals.

There are lots of proposals in the document, but the group had decided that in the limited time, they wanted to focus on proposal two which is about employing people with learning disabilities in making change happen. How many times do you go to a conference about people with learning disabilities and there are hardly any – or even no – people with learning disabilities speaking and leading sessions? How often do committees meet to discuss the services which affect every aspect of people’s lives, without a paid, trained professional with a learning disability there to share their expertise? The people at CHANGE believe that inclusion, participation, co-production are all just words unless people are employed, just like everyone else.

I didn’t do a great job during the part of the session I facilitated of explaining why we were focusing down so specifically on employment as the route to change, given all the other important proposals on the table, but the professionals with learning disabilities demonstrated why

it matters, not just through talking about the difference it made to how they saw themselves and how others saw them, but through the way the conversation we were having felt completely different to the typical roomful of non-disabled professionals. Whilst everyone was polite, there was more challenge and more directness. This wasn’t about outcomes, or key performance indicators, it was about people’s own lives and that of their friends. People came up with ideas about shifting power which may not have occurred to professionals. When the leaders in the room made commitments, the professionals with learning disabilities asked for names and dates. One of the proposals is for local NHS and council leaders to make themselves directly accountable to local people with learning disabilities. This meeting gave a flavour of the difference that could make.

The challenge to the people in the room was simple: you may not be able to change all the other health and care organisations out there, but you can change your own. So what are you going to do to employ more people with learning disabilities in leadership roles? If the agencies in the room did that, two things could happen. Firstly, they would be role-modelling employment of people with learning disabilities for the local agencies they try to influence. Secondly, if people with learning disabilities were routinely around the table as decisions were being made, the conversations and perhaps the culture would start to change, as we saw today. Those organisations would benefit from expertise which only comes with lived experience.

Some of the organisations represented are already employing people with learning disabilities, such as CQC which employs experts by experience in inspections, including one or two people around the table. Others, like NHS England, are at the start of that journey but made clear commitments, which they and CHANGE will share shortly.

I left the session feeling it had been by turns upsetting, inspirational, challenging and (when I was attempting to facilitate) hair-raising. One thing I’m sure of though: it moved the thinking of some of the sector’s most influential leaders further than dozens of meetings which haven’t included people with learning disabilities have been doing since the Winterbourne scandal, three long years ago.

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