Campaigning for inclusion: How volunteers tackle health inequalities with Mencap

Anne-Marie Anne-Marie, head of volunteering at Mencap, has worked in volunteer management within health and social care for over 20 years. Prior to her current role within learning disability, she worked with the Alzheimer’s Society leading the pilot phase of Dementia Friends, in a hospice and in student mental health. She is also a lead assessor in England for Investing in Volunteers.

Campaigning for inclusion: How volunteers tackle health inequalities with Mencap

At Mencap we’re here to improve the lives of people with a learning disability and their families now, and fight alongside them for a better future. People with a learning disability face a number of health inequalities and this has been highlighted during the pandemic with data showing that people with a learning disability are six times more likely to die from covid-19 than the general population.

Volunteer engagement at Mencap improves health outcomes of people with a learning disability in a number of ways; both directly and indirectly, through formal volunteering and community-led activism.

Local Volunteer Campaign Groups

Treat Me Well – aims to transform how the NHS treats people with a learning disability. It is focused on finding solutions to healthcare inequalities in hospitals – calling for all NHS hospital trusts to make reasonable adjustments for people with a learning disability: more time, better communication and clearer information.

The work was led by local groups of campaigners, which include, and are ideally led by volunteers with a learning disability. Groups are trained in knowing their rights in hospital, so they feel empowered to challenge poor practice, and campaign for change in their local hospital trust. By March 2020, 36 groups had been established, but suspended due to the pandemic. There are currently 18 groups back up and running, with the plan for a further 12 to resume later this year.

As the pandemic developed, local groups refocused their campaigns on working with GP’s and empowering and educating people with a learning disability on covid-19 and the vaccine. This was supported by a national media campaign to put all people with a learning disability in the vaccine priority group. We are proud that our message to prioritise people with a learning disability has met with recent success and everyone on the GP learning disability register will be invited for a covid-19 vaccine in group 6.

Micro-volunteering and e-campaigning

Mencap has a large network of e-campaigners. During the pandemic they were provided with tools and templates to contact their MP and share messages on social media.

We called for #ClearCovidCommuncation – asking politicians to speak in an accessible way.  With many of our regular volunteers not able to volunteer face to face, we encouraged all our volunteers to take on a campaigning role with a plea to ‘share our content, we know it’s working’.

Volunteering outside of campaigning

Volunteering enables people to see first-hand the challenges people with a learning disability can face, leading to a greater understanding of an issue and helping to raise awareness of key messages and campaigns. When we surveyed our volunteers in November 2020, 85% of volunteers reported good to excellent knowledge of learning disability after volunteering, and 90% confirmed they felt confident in challenging negative attitudes towards people with a learning disability. In addition, at any one time around 12% of our volunteers are people with a learning disability.

Here are five lessons our campaigning efforts have taught us

  • Co-production is key, and people with lived experience need to be at the heart of decision making.
  • Accessible training is vital, in terms of building knowledge, skills and confidence.
  • The more local groups there are the more effective they are; towns and villages work better than boroughs or counties.
  • Provide as wide a range of ways to volunteer as possible, from formal group leadership roles to light touch activism – for people with and without lived experience.
  • Mencap doesn’t need to own or lead the campaigning or have all the answers. Successful empowerment and change is about building great relationships, working in partnership and being community-led.


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