New Project to Improve Experiences for Autistic Patients
10 Oct 2019
Young people from the charity Ambitious about Autism are to lead a new 12-month project at Whittington Health aimed at improving the experience of autistic patients in hospitals across England.
The charity has been granted funding from the Health Foundation to carry out the work at Whittington Health NHS Trust – with the aim of sharing its results with NHS teams across the country.
There are around 700,000 people on the autism spectrum in the UK and many face health challenges. However, according to research by the National Autistic Society, most autistic people and their parents feel that doctors don’t make changes to meet their or their child’s needs.
Meanwhile, a study in Sweden, peer reviewed by the British Journal of Psychiatry found that the average age of death for a person with autism was 54 years.
Ambitious about Autism’s work will involve carrying out a review of complaints and incidents involving autistic patients at Whittington Health NHS Trust, as well as commissioning surveys of autistic people, their families and healthcare professionals to better understand how to improve patient and staff experience.
It will be led by a panel of young autistic people from north London who will meet regularly to feedback their experiences of accessing healthcare. It is hoped the research and recommendations resulting from the project will create a blueprint of best practice that can be shared across hospitals in England.
Ambitious about Autism has been working with the Whittington Health Trust for several years on projects aimed at improving the experience of young autistic patients in the paediatric areas of the hospital which can be found at: www.whittington.nhs.uk/autism.
As part of the partnership, Whittington Health has just launched a new section on its website designed specifically for children and young people who have autism or other learning disabilities. Local young people who have autism helped to develop the pages which include visual stories and videos to help prepare young people for a visit to hospital. The resources provide information about going to hospital, what to expect when you get there, communicating support needs to healthcare staff and a glossary of terms.
Jolanta Lasota, Chief Executive of Ambitious about Autism, said: “Being admitted to hospital is a daunting experience for anyone, but for autistic people it can be even more intimidating because they can struggle to have their needs understood.
“Social and communication differences can mean that autistic people find it more difficult to discuss medical problems – which can lead to serious health risks if not picked up by healthcare professionals.
“Understanding and tackling these barriers is key to solving this serious problem, and we are very grateful to the Whittington Health NHS Trust for their commitment to increasing understanding and improving practice on behalf of autistic patients.
“We also thank the Health Foundation for funding this work, which we hope will improve best practice in NHS Trusts across England.”
Michelle Johnson Chief Nurse and Director of Allied Health Professionals at Whittington Health NHS Trust, said: “‘We look forward to continuing to work in partnership with Ambitious about Autism and to further collaborating with some of the local young people with autism who use our services. We are committed to improving the experiences and opportunities for our young patients who have Autism.”
Recruitment is now open for the panel of autistic young people who will lead the project. Any autistic young person aged 16-25 from the boroughs of Camden, Islington, Barnet, Enfield or Haringey can apply. Find our more here: https://www.ambitiousaboutautism.org.uk/age-16-25/health-panel.