Paul James: A champion for inclusion

Paul has always believed in the importance of inclusion; but, from his own experience, he knows that the needs of people who are autistic or who have a learning disability are often overlooked in our society. So, when Paul found an opportunity to help overcome these problems as a member of the NHS England Health Improvement Team in the Learning Disability and Autism Programme, he knew he was the right person to take up the challenge and make a real stride towards equality.

For nearly two years now, Paul has worked with the Health Improvement Team atNHS England, helping primary care professionals to understand and implement strategies to make healthcare more accessible. From his own experience, Paul understands the nervousness that may be associated with healthcare, and how the right environment can help to reduce these anxieties.

In particular, there have been occasions when doctors have turned to Paul’s mum, and not to him, to discuss his medical situation. With such experiences highlighting where change was needed, Paul realised that he wanted to use his own insights to prevent similar situations from happening to other people.

“I saw that the job was right up my street and thought to myself: just go for it.”

Easy-read pamphlets and documents, large-print font, and longer appointment times are just some of the adjustments that can help reduce the anxiety and boost the effectiveness of healthcare for people with a learning disability and who are autistic. While these improvements may sound simple, Paul believes that reasonable adjustments should be the standard across healthcare environments. Which is what makes his job so important.

In his role, Paul has worked across a number of NHS projects, encouraging people who are autistic and/or who have a learning disability to access healthcare and advising primary care professionals on how to adapt their services. He has created easy-read newsletters, been part of campaigns to ensure reasonable adjustments in vaccinations and screenings, and has dedicated significant efforts to raising awareness for the Annual Health Check. Since accessibility is crucial across every aspect of healthcare, Paul’s role involves working on a range of different tasks across several teams – a variety he loves: “My job never feels old.”

Beyond his work with the NHS, Paul, who has Lowe’s Syndrome, runs his own website in which he talks about his experiences of the condition. He decided to set up the site back in 2009, in response to the prevalence of negative stories and information surrounding Lowe’s Syndrome. Growing up with the conditions, Paul felt that he was surrounded by frightening statistics and pessimistic attitudes about his capabilities and his future.

“People with Lowe’s Syndrome are told that they will have a shortened life. That’s that.”

Paul wanted to change this narrative. He set up his website with the aim of sharing positive stories of people with Lowe Syndrome, their friends and their families. The website mixes insightful information about the condition with personal stories and achievements from Paul’s life. Paul also uses the platform to promote that same message of inclusivity that underpins his work at the NHS. Though his “Sign for Inclusion” campaign, he encourages people to write messages about why they believe that inclusion is important. The list of signatures is a long one, with participants including Michelin Chefs, business leaders, and – most excitingly for Paul as an avid follower of Soap Operas – cast members from both Coronation Street and Emmerdale!

For someone like Paul who champions accessibility and inclusivity, initiatives like the Leaders’ List provide a really powerful way of showcasing the potential of people with a learning disability and who are autistic. By proving to the general public what a single person can do, Paul hopes that he can engender new attitudes which enhance the lives of many others.

Paul has a Personal Assistant Rob who helps Paul with his work.