When I was 16 years old my school set up for me to do voluntary work in Normansfield Hospital for people with learning disabilities. I will never forget walking into the children’s ward completely full of small cots in rows with children of all ages. All the children seemed to be wailing and some were being fed cold mashed potatoes whilst being tied to their chairs or cots.
I remember feeling sick in the pit of my stomach. I felt that I had unwittingly walked into a sort of living hell. An underworld of torture hidden from view. I couldn’t face going back and I never knew what happened to those children although I do know that the hospital was closed down.
I won’t tell you how many years ago that was…! Fast forward to a few years ago when CHANGE started working with the children’s rights charity Lumos across Eastern Europe towards the closure of institutions and the setting up of community based services. Shaun, my colleague and CHANGE’s International Project worker who himself has a learning disability and myself, found ourselves visiting institutions in many different countries. When we returned to the UK we saw the secret filming of Winterbourne View. Like everyone else I felt horror, guilt deep sadness and a responsibility to change.
Then we waited for change to happen. It has been well documented that there were concordats, meetings, more meetings, lots of commitment but no real change.
Two years ago at CHANGE we held a national event for people with learning disabilities to have a strong united voice around the closure of ATU’s. Over 100 people with learning disabilities came to the Our Voices, Our Choices, Our Freedom event from across the UK. They came up with a set of proposals for change. People with learning disabilities took the most important proposal to the first ever Summit meeting for people with learning disabilities hosted by the then Care Minister Norman Lamb.The heads of NHS England, Department of Health CQC, policy and government were there from across the board.
The most important proposal, the proposal that people with learning disabilities felt would create the most radical change, shift in power and transform their lives and their services, was to employ people with learning disabilities in co delivering their own services.
Simon Stevens from NHS England understood the importance of the message and as a result of listening to people with learning disabilities he included the employment of people with learning disabilities in his 5 Year Forward View. People with learning disabilities were employed in the Transforming Care and Learning Disability Engagement Teams and NHS England produced a Toolkit supporting employers in the NHS to employ people with learning disabilities. They have also employed a worker to oversee this work.
Last week I went to a national conference on Transforming Care. It was inspiring! A conference packed with professionals committed to working smartly, quickly and sometimes riskily to close ATU’s and move people with learning disabilities back into their communities. But I’m worried that this change is not enough. Will this really create the shift we need so that in 10,20,30 years time we won’t have institutions as an option for a place to put and forget about people with learning disabilities?
Over my lifetime I have seen lots of changes in services for people with learning disabilities but is it real sustainable change? Has the power shifted away from professionals to people with learning disabilities? For this to happen we must use the transforming care agenda as an opportunity to start to employ people with learning disabilities throughout the system, not as porters and in canteens, we know that people can do this, but using their skills and expertise to co develop and co lead this transformation of services.
The fact is we need to face our own uncomfortable truths about ways we unintentionally hold onto our power. We have to try and understand why we do it. For me I’m relearning not to take over, to take risks, to make mistakes, to not think my way is necessarily the right way. I question what ‘good’ looks like and try to be prepared to not feel too defensive and uncomfortable when my power is challenged. We need to change the power dynamic of people with learning disabilities as passive recipients of services, often too scared to speak out about the routine everyday denial of their rights. We must share our own power and we must do this by employing people with learning disabilities to co deliver and co develop their own services.
At the Transforming Care event I met Sharon Jeffreys, head of commissioning in Lincolnshire.In Lincolnshire they get it. In Lincolnshire they really are co creating a system and cultural change by properly employing people with learning disabilities in their commissioning team to advise and guide commissioners on service delivery and to oversee and agree the commissioning process.
We cannot wait for this change to happen. It must be now.We must be the change so that our legacy will be to know that because we have employed people with learning disabilities as co deliverers of their services, long after we have gone, and all the Transforming Care teams have finished their work, we will have left a changed culture that we will have co created together.
The only way that Transforming Care can be sustainable and the horrors we have witnessed to never happen again is to employ people with learning disabilities to work alongside ourselves. We have to do it. We must do it now. We must create the revolution.
“No real social change has ever been brought about without a revolution….revolution is but thoughts carried into action”. Emma Goldman