People power can transform care
I met a truly inspirational group of people this week, who are involved in something called Partners in Policy Making – a programme of training course for disabled adults, parents and carers of disabled children, and professionals who work with people with complex needs.
The courses bring together leading-edge experts with service users, so people can make informed choices about what kind of care and support would make the most difference to their lives. The training is a mixture of “information and inspiration”: care users and parents find out what is really possible, not just what services are currently available, by talking to national and international experts and to other families. The result is that people get the information and confidence they need to be genuinely ‘in control’ – as equal partners in determining and designing their care and support.
For example, one parent told me she had initially been told that her child would need a series of operations followed by long stays in institutional care. However, by going on the Parnters in Policy Making course she discovered that postural care and body alignment services meant her daughter could avoid invasive (and expensive) operations and stay living at home. Another described how the course had given her the confidence to work with her local mainstream school, rather than sending her child to a special school, and that her daughter had since gone on to university. Both parents said putting service users in control can lead to better outcomes and often better value for taxpayers money too.
All of the parents I met told me it was the network of other people in Partners in Policy Making who gave them the strength, confidence and courage to fight for the services that were best for them. I think this kind of model – which genuinely empowers people and puts them in control – is something that should be developed across different public services. I’m very grateful to the parents who came from across the country to talk about their experiences, and to Alex Fox from Shared Lives Plus for arranging the meeting.