‘Tokenistic’ service-user involvement must be addressed, says report

A new report highlights the importance of involving disabled people in planning and delivering services, but also the barriers they face when trying to share their lived experience.

The report, by the disabled people’s and service-user network Shaping Our Lives (SOL), says that those running involvement events do not always have the experience or knowledge to involve disabled people “meaningfully and accessibly”.

These events – allowing disabled people to have their say in the policies and services that affect their lives – could include a survey about a local health service, taking part in a focus group with a local authority, or sharing lived experience with students on a social work degree course.

SOL said such involvement could be a one-off consultation, a series of events, a group attended regularly, or a partnership where service-users and service-providers work together to co-produce a service or research study.

The Tickboxes and Tokenism report says the inclusive involvement of disabled people and members of other marginalised communities in such activity is “critical” in promoting “system and social change”.

In a survey for the report, two-thirds of those who responded – and 100 per cent of BSL-users who took part – said they needed their access and support requirements to be organised in advance of any involvement activity.

The survey was conducted last year as part of the Inclusive Involvement Movement project, funded by the National Lottery Community Fund.

More than half said they had faced difficulty having their access and support needs met, including reasonable notice of events and opportunities, papers provided in advance, an accessible venue, the option of remote participation in an event, transport expenses to be paid, and payment made for participation.

Some of those who took part in the survey reported that when they fed back negative experiences about involvement it was “sometimes unwelcome and prevented by organisations”, which left some people “feeling used and believing that the involvement process was tokenistic”.

Many survey respondents said that they “needed to know that their involvement would make a difference” and wanted event organisers “to feed back to them the changes implemented as a result of the work”.

Nearly two-thirds (63 per cent) of those surveyed said they found it difficult to find involvement opportunities with organisations such as the NHS, central government, local authorities and charities.

And many of those who took part said they needed to be listened to and for their input to have an impact.

The report concludes: “Increasing the spirit of true collaboration between experts with lived experience and organisations is achievable though greater communication, access provision, sensitivity, and flexibility, and through listening to the lived experiences of members of the disabled community and their carers.”

In a foreword to the report, SOL’s co-chair, Professor Peter Beresford (pictured), says evidence suggests that policymakers and services are not “walking the walk” when it comes to service-user engagement – otherwise known as public participation.

He says that too many disabled people are not able to take part in such engagement with the support and access they need.

Beresford says: “It is vital these findings are listened to by government, policymakers and local services.

“That way we will begin to get the whole picture from disabled people in all our diversity and begin to make the change and difference to people’s lives that is now so urgently needed.”

As a result of the survey findings, SOL has launched a new tool to help people who want to share their lived experience.

The My Involvement Profile allows people to record their skills, lived experience knowledge and experience of engagement, involvement, co-production and research, and explain their access requirements, with support from SOL if needed.

They can then share their profile with organisers of involvement activities.

SOL also has an Involvement Opportunities Board, which advertises engagement, involvement, co-production and research opportunities “for people who want to have a say and influence in health and social care”.

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