Today, I read that Essex Council had engaged in a 100 Day Challenge, run by the charity Nesta, that has focussed on giving decision-making power about people with learning disabilites and autism to the service users themselves. Thanks to this challenge, they have supported the start-up of a book club, an accessible magazine detailing local events, inclusive cricket matches and a monthly drop in centre providing information and advice for people with learning disabilites and autism.
Also, Essex County Council now employ “Nick’s Rule”, which is a short but explicit set of rules that state how everyone can be involved in decision making, including service users. This was inspired by Nicholas Bunyon; a member of the team supporting the 100 Day Challenge as part of a supported programme for young people with learning disabilities and autism.
All this was done by simply asking service users what they wanted. That was all it took. Asking “what would you like to see/do/be a part of?” and actually listening.
When I read about this, my thought process was initially about how fantastic this idea is, but then how disappointing that it is seen to be a new idea. It seemed like the perfect solution to so many issues, and should, in my eyes, be the first thing you do if you are creating services like day provision. This should be standard practice, but it’s incredibly encouraging that it is being taken on at a County-Council-wide level, as it has proven how real change can be implemented from a bottom-up level.
However, whilst sat on this high horse of mine about how it is clearly an obvious way to develop successful provision, I came to a very embarrassing realisation. I’ve actually never done it myself.
My older sister, Dorothy*, has a language disorder and learning difficulties associated with Hydrocephalus; a condition that causes too much fluid in the brain. In her late 20s, she happily attends day provision 5 days a week and does different activities every day. The two services she accesses are absolutely phenomenal in ensuring a service user’s time is well spent doing activities that are not only enjoyable but also productive (she’s not too impressed when there’s a bit of hard labour involved sometimes, but that’s just life I’m afraid). She loves the time she spends with her friends and boyfriend, gets to continue her hobbies of cooking and art (she is infinitely better at both those skills than I will ever be) and clearly gets a say in everything she does. But I’ve never actually asked her myself. I’ve never asked what her favourite thing is to do, or what she would do if she won the lottery and could do whatever she wanted, or what she specifically likes about the people running the service.
But why? Am I worried that I’ll give her ideas that will then be unachievable? Do I think that by asking her, I’m only going to make myself worried that life won’t live up to her expectations? Or have I just taken the approach of “I can see she’s happy, that’s enough”?
All of these reasons are completely ridiculous, but it showed me easy it is to fall into the trap of ‘if it ain’t broke, don’t fix it”. The fact that an entire County Council took this approach of giving the responsibility of decision making to the service users, therefore, is incredibly encouraging.
So, if you’re like me and you completely agree that co-production is an incredible idea, and that this project has hopefully led the way for other localities to follow suit in positive practice, and that the service users who were part of the project were very successful, have a little think. When was the last time you asked the service user closest to you about their views? You may have accidentally fallen into the same trap as me, and that’s a trap we all need to get out of.
P.S. Have a little light reading about what I’ve talked about, treat yourself: