Not Just a Ticked Box
For many years across the health sectors there has been an explicit recognition of the importance of the voices of lived experience. There are many good reasons for this, including:
1. Only the lived experience of individuals can contribute to a full understanding of the nature of specific ‘disorders’, elsewhere portrayed in ‘objective’ clinical categories and diagnoses.
2. Sharing experiences can help others recognise that they are not alone and provide opportunities for mutual support.
3. Experience of health service users should be a strong part of evaluation and health improvement.
4. Voices of experience are at the centre of community based resources such as user-led groups, campaigning and human scaled support.
5. Healthcare provision should not be a ‘top down’ process. Voices of experience should have genuine power to influence policies, strategies and implementation of services.
6. Experts by experience are best placed to design resources for self management of health problems.
There is always the danger that an element of tokenism may creep in. Institutions and third sector organisations, under pressure especially from funders to demonstrate engagement with voices of experience, may ‘use’ such voices to lend an appearance of full engagement. A box may be ticked. A ‘case’ may be ‘wheeled out’. In some ways the situation is analagous to political representation. The ‘voice of the British people’ is a constructed piece of rhetoric, and though focus groups and the like exist at local level for citizen involvement, the real power structures and decisions remain largely unaffected.
What can also be the case is that experts by experience are engaged with not as equal participants but as ‘witnesses’ rather than judges. There can be a hidden assumption to that those who have suffered are to be variously regarded as identified with stigmatising lack of full human agency, to be seen as their clinical condition rather than as a complete person who happens to have or have had a condition. Such voices are kindly invited to take part in a preset agenda. Interaction, conversations and ideas are limited to such agenda in the way that a survey response is limited by the form it takes.
The Scottish Health and Social Care Alliance’s project of Reducing Gambling Harms is based upon lived experience. Recently appointed, a PhD student will begin work in October to seek out and conduct in-depth work with individuals in Scotland who have suffered from gambling harms. Such qualitative research marks the turn from quantative research (facts, figures, data, statistics etc.), this being seen in the work of Gerda Reith and colleagues at Glasgow University.
Facilitated by project manager William Griffiths at the Alliance, a lived experience forum has been established. This has been characterised by agenda and priorities being determined not by the manager but by the forum members. One outcome has been the creation of the Three Horizons model shown above. (To dowload as a pdf click 3 HORIZONS ). The model shows clearly the important issues to be addressed in evaluating the present state of attention to gambling harms, and a step-change to what is needed and hoped for in the future. What this work demonstrates is that voices of lived experience are more than tokens of ‘illness’ but active agents of change. The Alliance project is a clear example of genuine engagement.
Beyond the larger organisations’ initiatives, the field of reducing gambling harms is filled with actions for change by people with lived experience of gambling harms. Today (4 June 2021) sees the start of a walk from Scotland to Wembley Stadium as campaigning to remove football’s link with gambling. The Big Step, organisers of the walk and created by lived experience individuals, grew from the work of Gambling with Lives, founded by parents bereaved by suicides completed by their children who were driven to despair by gambling. There are links to these and many other grassroots organisations on our Activists page. It is these activists, motivated by lived experience, who currently are major agents of change. There are, too, other actors such as politicians, academics, public health bodies, medical associations, journalists, lawyers. In informal networks, outside ethe constarints of this or that institutional agenda, the campaigning for change to the gambling landscape offers a model of how the voices of experience can work with many sectors as equal partners to bring about health improvement.
A great tribute from Nadine Ashworth, Peer Mentor for the NHS Northern Gambling Service, to those who have lived through the experience and now seek to better the world.