Co-production in action: tackling health inequalities for people with learning disabilities and autism

Co-production Week 2026 is centred around an important question: Care Equity: Who Gets Care? It’s an important conversation for us at Affinity Trust, because we know that people with learning disabilities and autism often face barriers to accessing the care they deserve. The preventable consequences of this inequality can be devastating, and urgent action is needed. That’s why our Affinity Trust Co-production team (ACT) are pushing for change.

The reality of health inequalities for people with learning disabilities and autism

The Learning from Lives and Deaths - People with a Learning Disability and Autistic People (LeDeR) programme has repeatedly highlighted that people with learning disabilities are far more likely to die from causes that could have been prevented with timely, appropriate healthcare.

Many people die younger than the general population, often because illnesses are diagnosed later, symptoms are overlooked, or reasonable adjustments are not made to ensure they receive the healthcare they need. LeDeR’s findings make for stark reading:
• On average, adults with a learning disability die 19.5 years younger than the general population.
• Nearly 60% of adults with a learning disability who had a LeDeR review died before the age of 65.
• 40% of deaths of adults with learning disabilities were preventable – that’s nearly double the rate of the general population.

Urgent change is needed to address these systemic inequalities, and one way of doing that is by increasing access to annual health checks for people with learning disabilities. This key recommendation from LeDeR shows how simple annual screening can pick up health issues that may otherwise be missed, and result in better outcomes for people with learning disabilities and autism.

Why do annual health checks matter?

Annual health checks give people the opportunity to talk about their physical and mental health, identify potential problems early and put plans in place to prevent more serious illness.

For many people, these appointments can identify conditions before they become serious and help ensure ongoing health needs are monitored appropriately.
They are particularly important because some learning disabilities are associated with increased risks of certain health conditions.

For example, people with Down's syndrome are at greater risk of some heart conditions and are more likely to develop dementia at a younger age. However, healthcare professionals may not always be aware of these associated health risks or consider them when making decisions about screening, monitoring or treatment.
Better awareness across healthcare services can lead to earlier diagnosis, more appropriate care and improved health outcomes.

Why are some people with learning disabilities and autism still missing out on annual health checks?
Although annual health checks are recommended, many eligible people still aren't receiving them. The reasons why are varied, but can include:
• Not being included on the Learning Disability Register, meaning that GPs won’t know to initiate annual health checks
• Lack of awareness amongst GPs, meaning some practices are not inviting people on the Learning Disability Register for health checks
• Lack of reasonable adjustments for people with learning disabilities or autism – for example inaccessible information and healthcare environments which are unsuitable for those with learning disabilities. This means that people may experience difficulties in attending their appointments and accessing the screenings and checks they need.

These barriers contribute to the wider health inequalities that continue to affect so many people.

How Affinity Trust’s Co-production team is helping to drive change

At Affinity Trust, co-production is central to how we work. Our ACT team, which is made up of people we support across the entirety of the UK, work together to choose priorities and decide the projects we focus on. They decided that access to annual health checks is a key area of focus for the coming year, and have already started work on several exciting projects:

Supporting Mencap’s I’m In campaign

Affinity Trust is supporting Mencap's I'm In campaign, which encourages more people with learning disabilities to join their GP Learning Disability Register and access their annual health checks.

Working with NHS Grampian

 In Scotland, where healthcare legislation differs from England, one of our Aberdeen-based team members, Lee, has been working alongside NHS Grampian. He is working alongside them with the aim of encouraging more GP surgeries to offer annual health checks for people with learning disabilities and autism.
As part of this project, Lee recently attended his own annual health check. To help others understand what the experience was like, he created an EasyRead presentation to share with his local ACT group, Caledonian Circle. In the presentation, he explained what happened during his appointment and helped others understand what to expect, encouraging them to book their own health checks. We’re now working with Lee to develop an audio version of his presentation so that it can be shared more widely with other people we support, breaking down barriers and encouraging even more people to attend their health checks. We’re proud of Lee, and of this great partnership, which shows how collaboration can help improve health outcomes.

Raising awareness of more inclusive blood testing

ACT members are also getting involved in raising awareness of a new pain-free blood testing device promoted by Patient Centric Sampling Interest Group (PCSIG).

The Touch Activated Phlebotomy (TAP) device offers a less invasive way of taking blood samples, which could remove a significant barrier for many people with learning disabilities who find traditional blood tests distressing or inaccessible. Innovations like this can help make annual health checks more inclusive and ensure more people are able to access the healthcare they need.

We’re proud to be working in partnership with people we support to advocate for meaningful change and better access to healthcare. For us and the ACT team, the work is only just beginning. Our team have many more ideas and projects planned for the coming months, and we’ll keep sharing updates as this important work develops.

Find out more about Co-production at Affinity Trust: