Respect in Bexley: shaping a more inclusive healthcare system

Self-advocacy group Respect in Bexley has a long, rich history of speaking up for people with learning disabilities and autism. Recently celebrating their 30th birthday, the group meets each week to work together, talk about important things in their lives and make a real impact on the world around them.

Over the last year, they’ve been collaborating with Queen Elizabeth Hospital to improve the experiences of patients with learning disabilities. Working closely with Learning Disability Clinical Nurse specialist Jennifer Sentongo, the group has helped develop ideas for a quiet room and created an easy read leaflet about what people with learning disabilities need when they stay in hospital and prepare to go home. Following the success of these ideas, Respect in Bexley were invited to take part in learning disability training sessions for staff at Lewisham hospital. The group were surprised to learn that healthcare professionals usually have very little training on this topic.

The training sessions are developed and delivered entirely by members of the group. Their passion and creativity shines through, and they keep the sessions engaging by mixing hard-hitting messages with comedy, videos, quizzes, music, singing and role-playing. They talk about their lives, how everyone should be treated equally, and how people with learning disabilities all have different needs. They cover death by indifference and how past incidences must never happen again. They sign This is Me from The Greatest Showman and act out a skit from The Apprentice. Crucially, they share powerful accounts of their personal experiences and how they like to be treated in healthcare settings, to drive the message home.

A key part of the training sessions is challenging misconceptions of people with learning disabilities. Respect in Bexley has members who are married, in paid work, or living independently and are proud to change beliefs about what people with learning disabilities can look and act like. They’ve had brilliant feedback from the sessions.

Demonstrating the lasting impact the team has, Respect in Bexley’s introduction to Queen Elizabeth Hospital came from a nurse that they had previously trained at the University of Greenwich, where they’ve been teaching student learning disability nurses for the last 15 years. Jennifer Sentongo remembered the brilliant training she received as a student and wanted to bring them on board in her role at Queen Elizabeth.

Their positive impact doesn’t stop there. Over the last few years, the group has worked with police forces, the London Ambulance Service and Transport for London. They helped create a communication book for paramedics to carry around, and a training video they created for the Ambulance Service even got rolled out to Australia! They’ve also got big plans for the year ahead, including holding a Big Bus Day to support people who are anxious about using public transport.

Jane Menzies, Project Coordinator, says

“Our Respect members meet week in week out, on a completely voluntary basis, to make a positive impact. They don’t need recognition to motivate them, but when we found out about the Leaders’ List win, their reaction was amazing.”