Design and initial evaluation of an autism-specific health check

Project Dates: From Jan 2019 to Jan 2021

Project Leader: Prof. Jeremy Parr, Dr. Kyle Montague

Sponsors: Autistica

Partners: This Research Is Supported By The Peter Sowerby Foundation

Could yearly GP checks and changes to appointments improve health?

Autistic people are more likely to experience poor health than people who are not autistic. Some don’t seek help when they are unwell and many find going to the doctors difficult. We will work with autistic people to develop and test an autism health check for use in General Practice (by GPs). It could become something that in the future is offered to all autistic people on the NHS.

We supported this project following a workshop with autistic people, family members, healthcare professionals, researchers and NHS commissioners. It was decided that health checks were a top community priority.

The need for the project 

In England, a yearly health check is given to people with learning disabilities aged 14 and over. Autistic people without a learning disability do not currently get a health check, but they are at risk of a number of health problems.

During a health check, a General Practitioner or nurse carries out a physical assessment, asks lifestyle questions, reviews medications and provides health advice (e.g. healthy eating, exercise, contraception). UK research suggests these health checks work well for people with learning disabilities – they seem to increase healthy behaviours and identify health conditions. Research in other countries suggests that adapted health checks for autistic people may be effective in the same way.

Firstly we need to understand how we can make surgeries and appointments easier for autistic people. Then we need to know how to carry out assessments and ask questions so that diagnosis, treatment, advice and support is effective for autistic patients.

The process 

There are three stages to the project:

Understand how to improve primary healthcare access

We will survey and interview over 200 people, including autistic people, family members, GPs and nurse practitioners. We will ask them about things such as difficulties they face when booking appointments and understanding each other’s needs, as well as exploring things that do work for them.

Create and test the autism health check

We will work with autistic people and families and healthcare professionals to look at existing health checks and toolkits and decide what should be changed to suit autistic patients in the UK. They will then test and feed back on the tools and materials.

Evaluate how practical and effective the health check is

We will involve 100 autistic people in a trial across 20-30 GP surgeries. Some will receive health checks others will not. We will look at data such as whether people attend their appointments and complete a pre-appointment form. We will also send questionnaires to those involved in the trial.

How this project can make a difference

If we can show that certain changes to surgeries and appointments make a big difference to autistic people, we can change the way GP surgeries operate, making it easier for autistic people to access primary care.

Our campaigning led to NHS England making health checks a priority in the NHS Long Term plan. This project will help the NHS test the best way of delivering health checks. If it is successful, we can campaign for the NHS to make annual checks available to autistic people across the UK. It could help the NHS identify and treat health problems earlier and ensure more autistic people live longer, healthier, happier lives.