A growing body of evidence tells us that autistic people are, sadly, more likely to experience poor health outcomes relative to the rest of the population. For example, they are more likely to experience poor mental and physical health and often have difficulties accessing good care.
In NHS England we want to change this. That is why we are committed to delivering on our NHS Long Term Plan commitments to improve healthcare so autistic people live long, happy, healthy lives.
It is essential that scientific evidence, in combination with the knowledge of lived experience advisors and highly skilled, trained clinicians, is used to inform policy making. Making changes at a national or even at regional level without considering evidence is risky and could mean investing resource into things that aren’t effective.
Last year, NHS England launched the Five-year autism research strategy during World Autism Acceptance Week 2022, and a lot of brilliant work has been done since.
The strategy has five pillars of strategic action.
1. Building an evidence culture in NHS autism services
The autism team has spent the year supporting colleagues at NHS England to consider high-quality and up-to-date evidence in their work. This has included reviewing documents to check the ideas are supported by evidence, ensuring research findings are communicated correctly, and helping people find existing evidence that relates to their work.
We have also worked to build links between NHS colleagues and leading researchers in priority areas. As a result, researchers are more familiar with the evidence needs of policy and NHS professionals gain a better understanding of how evidence can and should impact their work.
We have also begun holding regular research evidence talks where we invite researchers working in learning disability or autism to present their work to staff at NHS England. Talks have so far covered neurodiversity in schools, mental health interventions for autistic people, gender dysphoria and autism and good dental hygiene in autistic children.
These are informal sessions where colleagues can attend live or watch a recording of the talk at a time that suits them.
2. Funding autism research to fill evidence gaps in the NHS
Another important aspect of the autism research strategy is to ensure funding is invested based on the most pressing needs of the NHS.
We have developed excellent working relationships with many funders and other research organisations., such as the Small Business Research Initiative (SBRI) Healthcare who invested over £900,000 in research about autism and learning disability health services.
We were also pleased to work with the National Institute for Health & Care Research (NIHR) to help shape two recently announced funding calls.
The first was about Care (Education) and Treatment Reviews for people with learning disabilities and/or autistic people and the second was about improving accessibility of health services for people with communication needs.
3. Answer relevant research questions
In 2022, we worked with the NHS Accelerated Access Collaborative to produce a demand signalling report for the national learning disability and autism programme. This had an important role in identifying, prioritising and articulating unmet research needs in the NHS in order to fulfil our commitments.
The six key areas of focus identified are: annual health checks; improving quality of life; support for mental health outside of hospital settings; preventing and treating common illnesses; outcomes, and data innovation.
4. Raise the quality of research
We work in partnership with many researchers, clinicians, experts by experience and organisations who conduct or use research. Besides shaping funding calls, we have also worked alongside researchers at universities across the UK to support the development of funding applications.
In July 2022 we responded to the UK National Screening Committee’s consultation on population screening for autism in children under 5. We highlighted the lack of evidence available about a screening tool that gets the right balance between identifying false positives and false negatives.
5. Use evidence in national autism health policy
We regularly contribute to the development of policies and products by the national autism team at NHS England.
We have worked with colleagues in clinical, commissioning, programme management, community and expert by experience roles to create guidance to help integrated care boards design and deliver autism assessment services.
By reviewing the evidence, commissioning original research to fill evidence gaps and working closely with leading experts on certain key areas, we were able to incorporate the latest evidence with feedback from other key stakeholders, including clinicians, representatives from autism charities, and experts by experience.
We are more confident than ever that engaging with scientific evidence in the ways described here is a critical part of helping to create an NHS that works for everyone, now and for future generations.