Neurodiversity Transformation Programme
Contents
Section titled module-1
Neurodiversity Transformation Programme
Contents
Section titled module-2
What have we done so far?
The first phase of the Neurodiversity Transformation Programme has focused on understanding the challenges local families face and exploring possible solutions together.
The voices and experiences of local parent carers, children and young people are central to this work. We’ve engaged with people in a variety of ways – you can click on the links below to read more about activity to date.
Parent carers are also directly involved in the leadership of the programme. The three local Parent Carer Forums for Bristol, North Somerset and South Gloucestershire jointly lead the programme with the local NHS Integrated Care Board. Together, we are working closely with a wide range of programme partners including health, care and education services, Healthwatch and local charities such as Barnardo’s.
Section titled module-3
Listening events, surveys and insight
The programme’s work is informed by insight from a wide range of organisations and sources.
- We joined each of the local Parent Carer Forums in our area for a comprehensive ‘listening event’ to gain insight into parent carers’ challenges and experiences and identify ways we could improve the current autism and ADHD pathways
- We met with around 20 local organisations involved with the care of children and young people, to understand their priorities for support and service development.
- We worked with Barnardo’s Autism Group in Bristol, North Somerset and South Gloucestershire, as well as Bristol Autism Support, to gather insight from local families and children and young people.
- We reviewed existing published insight into the challenges local parent carers, children and young people face
- We gathered views from local families who had undergone an assessment for a neurodiverse need, as well as those awaiting an assessment, to understand their experiences and expectations of assessments.
Section titled module-4
Discovery conference: November 2023
We held two large-scale conferences bringing together parent carers with health, education and care services, charities and other groups involved in the care of neurodivergent children and young people.
The ‘Discovery’ conference in November 2023 explored how early needs are identified, and the impact on children and families when those needs are not met. It also looked at the causes of the increase in referrals for autism and ADHD assessment, and families’ experience of support following assessment.
Neurodiversity Transformation Discovery Conference 2023 outputs (PDF)
Hear reflections from people who went to the conference in the following video.
Section titled module-5
Design conference: March 2024
The ‘Design’ conference in March 2024 built on the November event to explore how we can improve early needs identification. We also considered how we can improve support for children and young people and their families and how we can break the diagnostic ‘barrier’ standing in the way of meeting children’s needs.
The Design conference generated nearly 400 ideas across the three themes, covering the different stages of childhood from 0-5 years through to 16-plus.
Neurodiversity Transformation Design Conference March 2024 outputs (PDF)
Hear reflections from people who went to the conference in the following video.
Section titled module-6
We are now reviewing the ideas generated in this first phase of the programme, to create a shortlist for further development and testing in the second phase. We’ll publish updates on this work here, so make sure to bookmark this page and visit in the future.
We are also exploring measures to quickly improve support for children and families currently awaiting an assessment.