New research highlights challenges faced by neurodiverse people from under-represented communities in NW England

4 mins read

Wednesday 19 March 2025

Tags: Neurodiversity Week 2025, access to health care

It’s Neurodiversity Week (17-23 March) and we wanted to share some new research we have published with partners the North-West Network of Parent Carer Forums (NW NNPCF), Alder Hey Children’s Hospital and Edge Hill University, about what stops some disabled and neurodiverse people from underrepresented communities accessing healthcare.

We already know that neurodivergent and/or disabled children and their families have less access to healthcare services as well as poorer health and life expectancy. The research team, funded by the National Institute for Health and Care Research, talked with neurodivergent young people and their families in the North-West of England to find out more about what they find difficult about accessing healthcare and what could be done to improve it.

Neurodivergent and disabled young people said that they felt health professionals did not always treat them with dignity and respect and that they often felt treated as ‘less than human’.

“Staff who care and understand, some are good, some try their best and others treat me as less than ‘normal.”

“I just get too nervous to talk to the doctor, the thought of the language that they use, it’s too difficult.“

Communication with health professionals could also be difficult with many of the health professionals they came in contact with often lacking an understanding of neurodiversity and disability. Often, they felt rushed and not listened to at medical appointments and unable to ask questions. They often didn’t understand the complicated language used by health professionals and felt they couldn’t tell professionals the best way to communicate with them. And they also told researchers that health care environments were often noisy, smelly, brightly lit and very noisy and making it extremely challenging for people who have sensory processing differences.

Mary Mulvey Oates from Contact says: “This research marks an important first step in finding out more about what stops people in some communities from getting the health services and care they need and are entitled to – and what can be done to help reduce these barriers. Young people and parent carers said they often felt judged, dismissed and discriminated against, due to a lack of understanding about their culture and language. As a result, often interactions with health services were avoided because of the anxiety and trauma it can cause.”

Reasonable adjustments can make a big difference

Sometimes it’s simple changes and reasonable adjustments that can make a real difference. Suggestions from the group of young neurodivergent people included ensuring health professionals have training to improve how they care and communicate with them, for example by using simple language and resources to help understanding.

Other suggestions from young neurodivergent people to make health care more accessible included:
• More flexible ways to book appointments with health services such as by text, online or via livechat
• Less rushed appointments
• More sensory friendly GP surgeries, hospitals and other healthcare settings

The research team also heard from Gypsy, Roma and Irish Traveller heritage, Asylum Seekers and Refugee communities about the significant challenges they face accessing health services for their disabled child, and co-produced suggestions to help reduce these inequalities.

Mary Mulvey Oates continues: “This project has discovered important priorities for neurodivergent and/or disabled children and their parents from under-served communities. We hope that we can continue to work with communities to drive further research and service change.”

All four partnership organisations working on this research were given special recognition by NHS England last month for this pioneering project aimed at improving healthcare access for disabled and/or neurodivergent children in under-represented communities.

Read the findings from all community groups in this project

Neurodivergent and/or disabled young people

Asylum seeker and refugee families

Gypsy, Roma or Irish Traveller heritage families

Parent carers who are themselves neurodivergent and/or disabled.

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