Collaborators
Dr Blandine French
University of Nottingham
Dr Maddie Groom
University of Nottingham
Autistica is the UK’s leading autism research and campaigning charity. Our mission is to create breakthroughs that enable autistic people to live happier, healthier, longer lives. We do this by funding research, shaping policy, and working with autistic people to make more of a difference. We involve the autistic community in setting the agenda for change and use the evidence and insights from our work to advise and influence key partners to implement proven solutions that change autistic people’s lives. Our research has contributed to developing new therapies, campaigning for better services and the development of evidence-based tools, resources, and information to drive change.
Nottingham Adult ADHD Support Group
The support group aims to provide understanding and friendship and a safe space where people can come and share their problems and successes. We have a variety of activities including “soapboxing” where members have 5 minutes to talk about any ADHD related topic including how the condition is impacting their lives, and “solutions pot” where members anonymously put into a pot a short note outlining a problem. These are read out, one at a time, and the rest of the group suggests solutions and coping strategies. Sometimes we devote the whole evening to a discussion on one particular topic. Nottingham Institute for Mental Health and Nottingham Trent University both provide occasional expert speakers (for which we are very grateful) and the group helps their students with their ADHD related research.
Part of Nottinghamshire Healthcare NHS Foundation Trust, NeSS is a specialist service for adults with neurodiversity within Nottingham and Nottinghamshire. It supports referrals for adults with (or suspected of having) ADHD and or/ autism for diagnostic assessment and the right treatment. NeSS recognises that neurodevelopmental disorders frequently overlap and that bringing together these specialisms will deliver a more joined-up service for patients.
Tourettes Action works in England, Wales and Northern Ireland and is the leading support and research charity for people with Tourette Syndrome and their families. The charity provides a wide range of support services and wants people with Tourette Syndrome to receive the practical support and social acceptance they need to help them live their lives to the full.
Parenting Special Children is a Berkshire based charity and its mission is to provide specialist parenting support to parents and carers of children and young people with Special Needs, so that they can create positive change in their lives. What is unique about Parenting Special Children, and important to the families who receive our services, is that all the staff, trustees and volunteers are parent/carers of children or young people with special needs.
Summary
We’re bringing together people who care about improving support for neurodevelopmental conditions, including ADHD, autism and tic conditions.
The network includes people from health services, education, research, service planning, community organisations, and people with lived experience. By working together, we aim to better understand what is difficult in current services and identify practical ways to improve the journey people and families go through when seeking advice, assessment, diagnosis and support.
The network was started by Dr Blandine French and Dr Maddie Groom from the Institute of Mental Health’s Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan, with funding support from the University of Nottingham.
What we are doing
Our work began with a launch workshop in May 2023, which brought together people from across Nottingham and Nottinghamshire to talk about how care pathways for neurodevelopmental conditions could be improved.
The event included presentations from people with different areas of expertise and experience. These talks explored the challenges faced by services, the impact of delayed or missed diagnosis, and examples of approaches that are working well.
Participants also worked in small groups to discuss what gets in the way of good support, what helps services work better, and what practical changes could make a difference. These conversations helped shape the priorities of the network and how we continue to work together.
Since then, we have continued to build the network through events, workshops, newsletters and shared resources. Our aim is to keep bringing people together, share learning across services and communities, and support improvements for neurodivergent children, young people, adults and families.
Infographic representing the ideal pathway to care for neurodevelopmental disorders
Testimonies
Participant feedback
“Really good day. I could have listened to the first 3 presenters all day!”
“Great format – speakers followed by discussion groups. Great organisation of event. Good control of timekeeping. Excellent venue except for availability of women’s toilets.”
“Very well organised and content of speakers presentations very relevant. Thank you for organising.”