A combined effort for autism: lessons from the community for the health system

The Health Foundation will launch a programme supporting collaboration between health care professionals, patients and the public in 2020. In advance of the launch, we are hosting a series of workshops to design an approach that reflects the needs and experiences of these stakeholders. We recently teamed up with charity Ambitious about Autism – a national organisation supporting young autistic people – to explore collaborative approaches to improving health care services.

Imagine you’re arriving at a clinic for an appointment. The waiting room is busy, brightly-lit and very noisy. The radio, intercom and television all play at once. You’re finding it difficult to order your thoughts, and you feel overwhelmed as your heart begins to race; the waiting room becomes unbearable.

Finally, you’re called in to see a doctor – one you’ve never met – and you struggle to describe why you’re here to see them. You feel rushed. Frustrated, you blurt out that you’re autistic. Do they understand why this is important? Do they know how to support you? You’re not sure.

The Westminster Commission on Autism found that a staggering 88% of autistic people said that they did not think health professionals understand their needs.

Autistic people are disproportionately likely to have conditions such as epilepsy, heart disease, diabetes, anxiety and depression. And though they are in frequent contact with health services, social and communication difficulties can make it difficult to discuss their health problems and access the care they need.

Health care professionals can also struggle to respond in the right way. Training is limited, there is a lack of awareness among staff about autism and its associated conditions, and they sometimes lack confidence when communicating with autistic people.

This matters because while many of the 700,000 people on the autism spectrum in the UK will live long, healthy lives, overall they experience much poorer health outcomes. A major study in Sweden found that the average age of death for an autistic person was only 54.

Improving care alongside the community

For health care organisations to better meet the needs of autistic people, they need to work with autistic people, their families and with community organisations such as schools, charities and support groups.

An excellent example is the work of Ambitious about Autism. Founded as a specialist school, Ambitious about Autism has over two decades of experience working alongside young autistic people to improve education and create employment opportunities.

This experience is now proving invaluable to health care organisations, which is why the Health Foundation is supporting Ambitious about Autism as it continues to collaborate with the Whittington Health NHS Trust to improve care for autistic people.

Young autistic people planned and delivered an autism understanding day for staff across the Trust. They are also working alongside health care professionals at the Whittington Hospital to develop resources for staff and patients. These include ward-specific visual stories and patient passports to support autistic people to prepare for visits to hospital, and communication guides to help staff to better understand the needs of autistic patients.

Building on the success of the work, young autistic people from across north London will now work alongside staff in acute and community settings. Together, they will prioritise areas of care to focus on and create tailored solutions for different services, empowering young autistic people to improve their experiences of health care.

A health system that learns with patients and the public

Ambitious about Autism’s work has a wider lesson for the health system. By understanding and applying the experience and knowledge of the communities they serve, health care organisations can create opportunities to improve the quality of care.

The Health Foundation and Ambitious about Autism want to help the NHS to take these opportunities in becoming more of a learning health care system.

This means creating a health care system that learns from and with every patient. We can achieve this if we use data and research continuously, improve and innovate based on the experience of treating each patient, and learn from good practice around the world. But, importantly, we also need to develop a culture that enables patients to work collaboratively with health care providers, so that the goals of patients and health care professionals align.

Much of the Health Foundation’s work in this area has focused on using data and research, together with experience from front-line health care delivery, to inform efforts to improve care. We also recognise that a truly effective health care system also needs to learn from, and improve with, patients and the public.

We need to see clinical and data expertise sitting side by side with insight and expertise offered by the wider community, for our health system to meet the needs of the people who depend on it, particularly those who experience the poorest outcomes.

This combined approach is what’s required for autistic people, who face stark health inequalities that are compounded by widely-held misconceptions about the condition among health care professionals.

The inclusion of learning disability and autism as a priority area in the NHS Long Term Plan is welcome news. However, the NHS must take its ambition to ‘continue to champion the insight and strengths of people with lived experience and their families’ further, by creating genuine opportunities for autistic people and their families to work alongside health care providers and community organisations.

Applying the skills and knowledge in the community will be essential to achieving the improvements in care that autistic people deserve.

If you’re interested in finding out more about the new programme, email patientsandclinicians@health.org.uk

Oliver Smithson (@oliver_smithson) is a Programme Officer at the Health Foundation. Emily Niner (@em_niner) is Participation Manager at Ambitious about Autism.

Thank you to Sarah O’Brien (@Sarahmarieob) from Ambitious about Autism for sharing her experience at the start of the blog.