Tickboxes and tokenism? Shaping Our Lives publishes a new report on involving people from marginalized communities

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Shaping Our Lives has published the Tickboxes and Tokenism: Service user involvement report 2022 – exploring deaf and Disabled people’s experiences of being involved in planning and delivering services such as health and social care.

Service user engagement (also referred to as public participation) is increasingly seen as important for shaping and delivering public services, but those running involvement opportunities don’t always have the experience or knowledge to meaningfully and accessibly involve Disabled people.

The report explores some of the barriers people face when it comes to sharing their lived experience and contains recommendations for organisations to make sure the lived experience of deaf and Disabled people is heard and valued.

There are five key findings from the study:

1. 92% of respondents said they would be interested in finding out about (more) involvement opportunities. 63% said they currently find it difficult to find involvement opportunities.
2. Only 39% currently have their access requirements recorded. Of those that didn’t, many thought this would be useful so that organisers could find the right people, plan ahead and make necessary adjustments.
3. They asked people what was important for them to be able to take part in involvement activities. 65% said that they needed their access and support requirements organised in advance. This rose to 100% amongst respondents to the British Sign Language (BSL) survey.
4. Besides meeting their access requirements and other practicalities, people said they needed to be listened to and for their input to have an impact. They want a meaningful experience and do not want their time wasted.
5. Over half (56%) of respondents have difficulty getting their access and support needs met (rising to 89% for the BSL survey).

Peter Beresford OBE, Co-Chair of Shaping Our Lives, Visiting Professor at the University of East Anglia, said: “There is a lot of talk about the importance of involving disabled people and social care service users. There is more and more recognition of making sure that involvement is inclusive; that is to say it should include everyone regardless of age, ethnicity, gender, sexual orientation, impairment and so on.”

“But we see that too many people aren’t able to get involved with the access and support they need. Many more want to have a voice and be involved. The report offers recommendations and ways forward.”

To download a copy of the report. please visit the Shaping Our Lives website.

Launching the My Involvement Profile

As a result of the survey findings, Shaping Our Lives is launching a new tool to help people who want to share their lived experience.

The My Involvement Profile is a resource where people can record their skills, lived experience knowledge and experience of engagement, involvement, co-production and research. Crucially it will also support people to explain their access requirements in advance.

They asked in the survey if people had their access and support requirements, as well as their knowledge and skills, recorded so that they can be easily shared with organisers of involvement activities. The majority of people (61%) said that they didn’t. When asked if it would be helpful to have such a record, many people thought that it would be a great idea and would help organisers find the right people, plan ahead and make necessary adjustments.

Shaping Our Lives can support individuals to complete their My Involvement Profile. Find out more about the My Involvement Profile on their website.

About the study

The survey was promoted through the Shaping Our Lives network and beyond, using the website, ebulletins, social media, their members and their partners. It was interpreted into British Sign Language and promoted to Deaf organisations. They ran one workshop with people with learning disabilities and have been supported by People First England to disseminate the survey to their members.

They received 126 responses, with 9 from the British Sign Language community, and 12 people attended the workshop.

For more information, please contact Becki Meakin, Involvement Manager at becki@shapingourlives.org.uk or c07956 424511.