- Name My Hospital Passport: About Me and My Health Needs
- Provider Ambitious about Autism
Hospitals can be an intimidating place for anyone. But for autistic people, a hospital visit can come with added anxiety: will healthcare workers understand my needs?
Coronavirus has amplified the need for effective communication between healthcare professionals and patients. This year, working with a health panel of young autistic people aged 16-25, the participation team at national charity Ambitious about Autism created My Hospital Passport, to empower young autistic people to have a say in their own care.
The seven-page personal document details the owner’s communication, sensory and medical needs, as well as any other information they would like healthcare professionals to know. The document is held by the young person who owns it.
Sarah O’Brien-Quilty, participation officer at Ambitious about Autism, says the passport is a first step in tackling health inequalities by empowering young autistic people to have a say in their own healthcare.
“I myself am autistic, so that’s the expertise I bring to this role,” she explains.
O’Brien-Quilty has also experienced difficulty accessing both physical and mental health services. “The way that an autistic person like myself indicates pain or communicates symptoms may be different to how a clinician is expecting it,” she adds.
O’Brien-Quilty says autism is “widely misunderstood” across the healthcare system, and the hospital passport can help build communication and understanding between health workers and autistic patients.
“It is a way to really connect with someone on a human level that can be forgotten in medical notes,” she explains.
“It is also a way of empowering that person, to know that they have the document that has everything about them and they control what the information is. You can very clearly show that person ‘you need to speak to me slowly and not overwhelm me with information’ or ‘I only speak using pictures rather than with words’.”
Ambitious about Autism has been working closely with the Whittington Health Trust since 2016. Patrons from the charity, along with the Children and Young People Learning Disability and Autism Working Group, lead a co-production project across Whittington hospitals.
O’Brien-Quilty works with the charity’s health panel of autistic young people, hosting monthly conferences with healthcare professionals from the trust to create training and resources.
She says: “This way of working has so much value. These young people are able to have really honest conversations with those in the most senior positions in the trust and hold them to account.”
My View
Health panel member
"I have enjoyed participating and speaking out regarding my experiences of accessing healthcare with a barrier of having autism. This has increased my confidence in ensuring that GPs are aware of autism.
"I have also enjoyed meeting other individuals on the panel who are undergoing a similar situation. This panel has been amazing in that our aim is to empower ourselves by educating healthcare professionals about autism and the barriers we face when attempting to access healthcare.
"The panel was needed to reduce discrimination, which I am extremely pleased to have been able to participate in and make my voice heard. Professionals will be able to transfer their expertise and offer enhanced support when working with autistic people – they are equipped to offer assistance and are more understanding.
"Working collaboratively is good because people with autism can share their expertise and lived experience. Teamwork is key!"
