Conference to put disabled people at the heart of inclusive involvement debate

A ground-breaking conference in November will put disabled people at the heart of the debate on how to remove the barriers preventing service-users from being involved in planning the services they use.

It is believed to be the first time that a UK conference about inclusive involvement in services has been organised for service-users and run by a user-led organisation, and it will allow disabled people and representatives of other marginalised communities to share their experiences.

The free conference on Tuesday 1 November is being organised by Shaping Our Lives*, a disabled people’s and service-user network with more than two decades’ experience of facilitating and practising inclusive involvement across the UK.

Those speaking at the Thinking Outside the Tickbox conference in Birmingham – which will also be held online – will include representatives of Muslim, LGBTQ+, South Asian, Gypsy, Roma and Traveller communities.

They will discuss how to remove the barriers they face in having their voices heard in improving services.

User involvement in services can include patient and public involvement groups run by GP surgeries, improving the way social care is delivered locally, or even – as in Southend-on-Sea – playing a part in deciding how grant funding is distributed through a new community investment fund set up by the council.

It can also include taking part in surveys, focus groups, sharing lived experience with students, or taking part as a partner in research or co-designing a new service.

Much of the focus of the conference – which is being funded by the National Lottery’s Awards for All programme – is likely to be on involvement in health and social care services, which is where Shaping Our Lives has traditionally concentrated its work.

The conference, which will be chaired by Shaping Our Lives’ co-chair Professor Peter Beresford, will also highlight the experiences of marginalised people with intersectional backgrounds.

Speakers will include a representative of the LGBTQ+ Muslim community, a transgender mental health service-user, and disabled people from the South Asian and Traveller communities.

Becki Meakin, Shaping Our Lives’ involvement manager, said: “The most common reason people take part in user-involvement is they want to improve the experiences other people like them have of using health and/or social care services.

“They want to make it different and better for other people.”

She said many local authorities are engaging in the idea of involving service-users in their work because of the current movement towards integration of social care and health services through the new integrated care systems (ICSs), “but it doesn’t mean they are doing it very well”.

She said: “Often they don’t know how to work really well and inclusively with people and lack confidence.

“More than anything, it’s a fear of getting it wrong on things like access requirements, and when someone does ask, they are not sure how to organise access adjustments.

“There are some people with real commitment and vision on user involvement, but they are few and far between.”

Shaping Our Lives often works with health and social care organisations to support them to improve their user involvement, but Meakin said the conference will “turn that idea on its head”.

She said: “We want to build confidence and knowledge and understanding of user-involvement among individuals.

“We want to give those individuals the confidence to get involved in activities to influence health and social care service policy and delivery, but also to make them aware of the barriers and exclusion that people experience.”

Meakin said she also hopes the conference will tackle some of the “much less understood areas” of user-involvement, such as the barriers faced by Traveller communities, and involvement in policies addressing food poverty.

She also hopes there will be a lot of discussion about how multiple oppressions create intersectional barriers.

She said: “A lot of disabled people don’t get involved because they are still very much excluded because they are from a different faith or have other health conditions or they are of a certain age.

“We have got to learn to be much more thoughtful and adaptable about how we include service-users.

“It’s people organising the involvement thinking, ‘What do I need to do to include people from this particular community?’”

Shaping Our Lives has already launched My Involvement Profile, which allows disabled individuals and others to explain exactly what adjustments they need to be able to be involved equally, and it will soon launch a pilot scheme that will provide individuals with mentoring in inclusive involvement practice.

Meakin hopes these two projects, funded by the National Lottery Community Fund, and the conference, will help Shaping Our Lives promote inclusive approaches to user-involvement “from the bottom up and not just the top down”.

Attendance at the conference will be free, with some small travel bursaries available for those who need financial support with travelling to attend the event in person.

The conference will also mark the 20^th anniversary of Shaping Our Lives being constituted as a non-profit-making company.

*Shaping Our Lives is a Disability News Service subscriber

This news story is part of an ongoing Disability News Service series that highlights the vital work of the UK’s disabled people’s organisations

Picture: Peter Beresford (left) and Becki Meakin

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