Life on hold
Report published 11th March 2024
Written by Jude Woods, Heather Thrippleton and Gemma O'Connell
"Life on hold" - Neurodivergent people and healthcare experiences
West Yorkshire Voice is a network run by local Healthwatch to provide local voices to the West Yorkshire Integrated Care Board (those in charge of the NHS in West Yorkshire).
In preparation for the Neurodiversity Summit run by the NHS Integrated Care Board in West Yorkshire, the West Yorkshire Voice actively listened to the experiences of neurodiverse people through interviews, focus groups and shared Healthwatch insight. Together, we produced a report called 'Life on hold', highlighting the experiences of neurodiverse people and how their lives become 'on hold' when facing long waiting lists for assessments, diagnosis, support and treatment, particularly for attention deficit hyperactivity disorder (ADHD) and autism assessments. Instead of Healthwatch suggesting recommendations, the participants sharing their experiences made suggestions of what they want to see change.
Click on the button below to read the report.
Please get in touch if you require the report in a different format. Either call 0113 898 0035, email info@westyorkshirehealthwatch.co.uk or text 07717 309 843.
The definition (according to the Oxford English Dictionary) is "Differing in mental or neurological functioning from what is considered typical or normal"
Neurodiversity is a wide variety of ways we think, learn, feel and process information.
Common types of neurodiversity include autism, attention deficit hyperactivity disorder (ADHD), as well as dyslexia dyspraxia, dyscalculia and obsessive compulsive disorder (OCD).
It is estimated that around 1 in 7 people (more than 15%) in the UK have some kind of neuro difference (Source: Local Government Association).
What do people want to see change?
- More professionals able to access and streamline processes.
- Improved support for those waiting and alternative options for diagnosis.
- Investing in better support to reduce long-term cost.
- Enhanced staff training and accountability.
- Individualised support in schools for neurodivergent children.
- Listening to parents and carers and educating GPs on treatment options.
- Prioritising training for assessment providers and offering peer support while waiting.
- Tailored support for children and parenting courses on neurodivergent children.
- Utilising autism pre-screening tools to avoid unnecessary therapy sessions.
- Creating an app for diagnosis and support.
- Using a human rights equality approach and social model of disability.