I spoke at a Westminster Health Forum event on learning disability support recently. I was speaking
At the event, as with most events on the transforming care agenda, there had been a lot of talk about the changes needed to systems, commissioning and processes. I was fortunate to speak after Shaun Webster MBE from CHANGE who had talked powerfully from personal experience about moving from a job where he was not treated with respect to his inspiring work in several countries in Europe, helping to close down institutions. Shaun, who has a learning disability, said, “When they closed down institutions they were moving children back in the community. Children in institutions had no confidence and no belief in themselves. In my job I was a role model because when I was training them they had no voice at all, I trained them to have a voice, to be confident, to train other people with learning disabilities, because when children move into a community they want to have a real voice and to have say in that community. That’s why I was training them around being confident, to make people listen to them and not let people put them down.”
Here’s (roughly) what I said:
We’ve talked in cycles usually following the latest crisis or tragedy for years, for decades about improving services for people with learning disabilities. And I’m in lots of discussions around quality and safety and outcomes, but I’d like to spend my five minutes instead of talking about all those things, just talking a little bit about power and about love.
We’ve done quite a lot of thinking about power in social care and more recently in health and have attempted to shift power, particularly power in the form of money to individuals and families through personal budgets and direct payments. And it’s been patchy and contested, but it has had some huge successes, people who have direct payments have created an entirely new workforce of personal assistants, 150,000 of them, which has allowed people to move not just from service user to customer or client, but from customer or client to boss. So there has been a shift and nobody was going to make that shift for them, nobody was going to commission that shift, it was only people and families that could make that change and create that new form of social care.
But it was probably Shaun and his colleagues at CHANGE that got me thinking more deeply about the shifts we haven’t made in power. And in particular, about the almost non-existent progress that’s been made around sharing power with people with learning disabilities in the form of employing people and paying them a wage.
And when we were waiting to meet the minister and NHS CEO Simon Stevens and lots of other important people in a post-Winterbourne summit, Shaun and colleagues homed in on employment of people with learning disabilities in the system as the single thing they wanted to talk about if they only had time to talk about one thing. And not only had no other meeting I’d been in and I’d been in a lot post-Winterbourne, come up with that, seen that as the most important thing, nobody had even mentioned it, I’d not heard that mentioned once as an improvement, because it’s not an improvement it’s a complete transformation.
It was also that group that came up with idea, sadly not adopted by the Green Paper, of local Scrutiny Boards to replace our currently very patchy despite people’s best efforts, often ramshackle, sometimes non-existent Learning Disability Partnership Boards, which have always been optional and reliant on the indulgence of local commissioners and services rather than mandatory and having teeth.
So, when we start to enable people who are citizens and who have lived experience to take charge, you start to have much more hard-edged discussions about power in my experience.
And you also start to talk about love, because we miss the point when we start discussions about how to improve services, the only starting point for this is how do people live a good life. And there’s a huge gap often between even a good service and a good life, because a good life for most of us is about the people we live with, the people we love who love us, our sense of belonging, our sense of purpose. All of those things that you can’t contract for, you can’t commission for, there’s no tariff for it, you can’t inspect for it. And it seems hopelessly naïve in the current climate of austerity and cuts, and crisis even to start talking about it, but actually it’s not naïve, it’s too many of our services that are naïve, that when it comes to their lack of understanding of what really matters to people and what makes people tick.
So how can we bridge the gap between ideas of belonging and love, and fun, and support? And we can and Shared Lives is one way of doing that, it’s not the only way. But it is a way that demonstrates you can combine the infrastructure and the quality, and the safety, and the plan B of a regulated care sector with friendship and family and belonging, and love. And you can do that at scale, there are now in England alone, 11,500 people using Shared Lives, most of whom have been labelled as having a learning disability. And it’s growing by over a quarter every two years at the moment.
If you haven’t heard of the model, if you were recruited by your local Shared Lives Scheme to become a Shared Life carer, you’d go through an approval process which is fairly rigorous. It takes three to six months, it involves training, looking at you, your home and whether you’re ready to make this lifestyle change. And if you are approved as a Shared Lives carer, you’ll be matched with an adult who needs support so that you share family and community life. And for half of the people using Shared Lives that means moving in with the Shared Lives carer and their family and living as part of the household.
And when you meet people who have lived like that for 30, sometimes pushing 40 years now, they don’t talk about clients or customers, they talk about each other as being part of the family. If you visit Shared Lives households you don’t feel like you’re in a service. Even though the local scheme is inspected like by CQC which consistently says it’s better and safer than all other forms of regulated care.
So the risks are managed, it combines the professional and the personal, Shared Lives carers are trained and paid, but they’re not paid by the hour and people choose real relationships which can be lifelong. So it puts a challenge up there to all of our interventions actually, people living in Shared Lives are people with learning disabilities, sometimes who have mental health problems as well, who have been labelled complex, challenging, some of whom have been in the criminal justice system, people with substance misuse problems and so on, living happily in ordinary family homes.
We’ve just received nearly two million from NHS England to scale up and demonstrate Shared Lives, so if you’re from the health sector there is good hard cash available at the moment and incoming support to help you apply this model.
I just want to end with a challenge which I sometimes describe as the connection test. All of our interventions, not just things like Shared Lives, can connect people or disconnect people. We need to make sure that all of our interventions are connecting people, creating safety, but also creating the space for belonging and love.