In 2020 Shaping our Lives was successful in securing funding from the National Lottery Community Fund to develop a national inclusive involvement movement. From that they commissioned research and produced the following report:
Tickboxes and Tokenism?
Service User Involvement Report 2022
We aim to enable local service user groups and individuals from marginalised groups to be more influential in service planning and delivery by having a meaningful input. We believe the inclusive involvement of Disabled people and people from other marginalised communities is critical to promote system and social change.
We have been talking to service users, Disabled people and those from minoritized communities for several years about how we could support them to be heard in policy and planning and this has influenced these developments.
In 2021 we ran a survey with our wider network to gather views and experiences on service user involvement. We wanted to find out the current situation for people taking part in involvement and to inform the development of our support to individuals and organisations and make sure we were meeting people’s needs.
The survey was promoted through our network and beyond, using the website, ebulletins, social media, our members and our partners. It was interpreted into British Sign Language (BSL) and promoted to Deaf organisations. We were conscious the questions were not necessarily accessible to all so we ran a workshop with people with learning disabilities and have been supported by People First England to disseminate the survey to their members.
We received 126 responses, with 9 from the BSL community, and 12 people attended the workshop. No questions in the survey were compulsory. Of the 126 respondents to the survey, 65% were female, Creating better lives for all by involving Disabled people and service users. 28% were male, 7% identified as other and neither. Survey participants ranged in age from under 18 to 80 plus. All survey responses were anonymous, and several questions invited people to express additional information.
➢ 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.
➢ 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. Some felt it would help diversity and prevent things going wrong.
➢ We 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 BSL survey.
➢ 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. This was a key theme throughout the survey. It showed the importance of feeding back to people involved what the outcomes of the work were.
➢ Over half (56%) of respondents have difficulty getting their access and support needs met (rising to 89% for the BSL Creating better lives for all by involving Disabled people and service users.