This discussion of user involvement all starts with a memory. It’s interesting where trains of thought take you. This one actually started the other day with a long train ride. To pass the time, as ever, I was listening to my Ipod. I was listening for a change to Bruce Springsteen and it was ‘Streets Of Philadelphia’. It reminded me of the terrible days of HIV/AIDS when it was both an unstoppable killer and people affected were facing the most extreme prejudice, stigma and discrimination.
And then it reminded me of Gareth Walton, a young man I met who was living with HIV/AIDS. And that made me remember a book I was fortunate enough to be involved in – A Challenge To Change: Practical experiences of building user led services. And I realized that this book, which I think was a marker in the development of user involvement was now this year celebrating its twentieth anniversary. It was published by the then National Institute for Social Work in 1993.
I’ve got that book in front of me now. It’s great to look at it again. Many of the pioneers of user involvement are included among its contributors: Jenny Morris, Lorraine Gradwell, Jane Campbell, Ingrid Barker, Bob Findlay, Marj Mayo, Frances Hasler, Andrea Whittaker, Jackie Downer, Peter Ferns, Chris Harrison, Viv Lindow, David Crepaz-Keay. The list goes on and on. And also Gareth Walton, a name that far fewer are likely to know.
And at the front, there is a lovely dedication written by a community worker, who worked with Gareth, Andy Brown, then working in Hammersmith and Fulham which pioneered participative work with people living with HIV/AIDS – many lived in the borough.
As Andy wrote, Gareth died earlier in the year the book was published, aged 27. He was a member of the Community Health Team Quality Assurance Group for the local HIV service. ‘The Group was essentially a user-led initiative set up by people living with HIV/AIDS in partnership with [his] team. It worked to improve services and educate them about what it meant to live with a life threatening illness’. Andy went on to say:
Derek, another Group member, wrote, ‘We’re the free souls not bound by bureaucratic roles. We have ambition and vision’.
The book was dedicated to Gareth and Derek who had also died and to other members of the group who had died and who were still playing an active part in its work. Andy said it all when he wrote of the Group:
They have taught the team and myself so much about what it means to involve people in service delivery…For that we will always be in their debt’.
I still find this book helpful 20 years on. There are contributions about user-led initiatives for involvement and provider-led ones. Practical models for change are identified and discussed and first hand accounts of being involved are offered, including Gareth’s.
Looking back, the book is cause for both celebration and sadness. Celebration that so much more has been achieved and of course sadness that there are still so many barriers in the way of truly meaningful involvement and empowerment for disabled people and other service users. Problems that were identified then are sadly still as important now. This includes problems of tokenism, where political rhetoric about the importance of user involvement is not matched by either the commitment or resources attached to it. If anything, it is possible that the gap between rhetoric and reality has grown as policymakers and politicians have become more and more skilled at ‘talking the talk’ about user involvement, rather than ‘walking the walk’.
On the other hand key successes include the increasing numbers of service users who have gained skills, confidence and empowerment from becoming involved and also growing recognition of the essential need to make involvement possible for everyone and not to keep leaving out a wide range of key groups, as so often has been and is still sometimes the case. There has been a revolt against ideas like ‘hard to reach groups’ and also a determination to think more in terms of groups that power holders seem to see more as ‘hard to listen to’ than that are actually really ‘seldom heard’. All groups and individuals need to be included in user involvement schemes and policies otherwise all that happens is that broader exclusions in society are extended even to the domain of user involvement – making things more rather than less unequal.
Of course recent harsh cuts in public spending, cruel welfare ‘reform’ policies and practices and governments which seem set on discriminating against disabled people and poor and powerless people, while advantaging rich and powerful people and corporations, have created a much harsher world and one which is heading in a very different direction to participation, empowerment and social justice.
So it isn’t surprising if many service users now are distrustful of traditional service and government led involvement initiatives and instead are getting more involved in activism and campaigning from outside the system which they feel is more likely to be effective rather than tokenistic. Service users have come in for increasing stigmatizing attacks as dependent, lazy and useless. With one hand policymakers give big grants to mental health anti-stigma campaigns and then with the other ramp up stigma with their mass media campaigns. No wonder many service users are looking for more effective and often more oppositional forms of involvement. This also connects with the enormous and growing importance of social media, social networking and the internet for service user involvement and campaigning – making it possible for people to be actively involved and do things together even if they face access problems and barriers. On the other hand this also highlights the fact that many service users and disabled people don’t have access to the internet and more needs to be done by government to challenge this if it is serious about connectivity and inclusion.
So to sum it up. Some great things are happening but more needs to be done by policymakers to support them on service users’ terms. This includes the development of user led and peer support services; real support for user led and disabled people led organisations; the strengthening of advocacy and particularly self-advocacy with resources and sustainability to match; much more emphasis on using user-defined standards to measure quality; more support for user controlled research and evaluation and of course for user involvement in professional education. We know all of these have a valuable and unique contribution to make. But it really is time for the pace of taking them forward to be upped.
In his Chapter in the 1993 book A Challenge For Change, Gareth Walton wrote about how much he liked to dance. He also wrote about how important being involved was for him.
And I think it’s very important for professionals to do it as well. You have to be made aware of what the problem is, and where it could lead. Otherwise you just lose the view of what you’re trying to help people with.
Thanks Gareth. I’ll always remember your words. We have the chance, all of us, people as service users, as carers, as workers and as all three to keep making user involvement a better reality. And we have the shoulders of many wonderful people who have gone before us, like Gareth, to help us do this.
Join & share your views in a special evening @SWSCmedia with Prof. Peter Beresford, discussing Service User Involvement… Tuesday (23 July 2013) at 8:00 PM BST / 3:00 PM EDT.