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
This project seeks to improve access to care for neurodiversity by establishing a network of stakeholders with responsibilities for designing, delivering and/or commissioning services for young people and adults with neurodevelopmental conditions (NDC- attention deficit/hyperactivity disorder (ADHD), autism, Tourette Syndrome). Our research has shown a lack of training on NDC amongst healthcare professionals, leading to poor understanding, and a failure to promote or prioritise service commissioning. This leads to long waiting lists for assessment, poor treatment monitoring, negative outcomes for service-users, and significant socio-economic costs.
We aim to create a network of key stakeholders and policymakers who will help champion pragmatic solutions to address barriers to access to care and promote better training and commissioning decisions. This network will include members of the Centre for ADHD and Neurodevelopmental Disorders Across the Lifespan (CANDAL-a research centre of excellence at the Institute of Mental Health), NDC charities, service-users, healthcare staff working with neurodiverse individuals, and local commissioners.
What we are doing
The main activity was a launch event in May 2023 to establish the network and to bring together experts in healthcare, commissioning, service design/delivery, research and lived experience to discuss challenges, best practice and potential solutions to designing effective care pathways for neurodevelopmental conditions (NDCs). We began with presentations from experts speaking from a range of different perspectives on the challenges of delivering an effective service for NDCs, the risks associated with delayed, late or missed diagnosis, and examples of services that are working well.
Workshops were conducted in small groups to identify key objectives, barriers and facilitators to service delivery, and potential solutions to the challenges faced. We also discussed how best to continue engaging this new network for future research and policy development.
In order to stay in touch, regular meetings, newsletters and events will be conducted.
Infographic represnting 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.”