Families of children and young people who have neurodiverse needs are benefiting from a new programme of support in Devon
Neurodivergence is a term used to describe additional needs associated with diagnosed conditions such as autism, Attention Deficit Hyperactivity Disorder, Dyslexia, Dyscalculia, Developmental Language Disorder, and Tourette’s syndrome.
It’s thought that around 15 per cent of children and young people in Devon have a neurodiverse diagnosis, or neurodiverse needs as yet undiagnosed, equating to at least 30,000 children and young people across Devon, Plymouth and Torbay.
Families and young people are faced with range of services and support, from NHS primary care, through to schools and education services, through to Children’s Services and into adulthood, employment and independent living.
Community, peer support and other voluntary groups are also part of the network of support that’s often seen by parents and young people as complex and difficult to navigate.
So, working in partnership with local authorities, the NHS is employing keyworkers – or ‘navigators’ as they’re also known – to work with families whose children have a neurodiverse diagnosis, or who have yet undiagnosed additional needs associated with neurodiverse conditions, to help them navigate their way through the ‘system’.
In Plymouth, the small team of ‘navigators’ has been working as part of the community-based Neurodiversity Wellbeing Team since June 2024.
They are supporting parents and young people with navigating the complex networks of health, education, social care, community, and voluntary services.
They’re listening to families, providing them with advice and connecting them with statutory and non-statutory services for practical and emotional support.
They’re helping parents with form-filling and plans for their children. They’re advocating for parents when required, and as part of their support, they’re providing an advice telephone line that is open to parents, carers, young people and professionals who work with young people with neurodiverse needs.
Over the last few months, they have spent time building their knowledge of the network of support that’s available across the city.
Parents have been grateful for the keyworkers’ support. Feedback from parents has included:
“Everyone listens without judging, and lets you talk.”
“A very safe place to talk and get advice about my twins.”
“Very helpful and listened to everything we discussed. I had my daughter with me, and they made her feel comfortable and included her in discussions. Great advice given.”
“Fabulous service, really friendly group.”
“The staff are informative and friendly.”
NHS Devon have provided funding to run the pilot in Plymouth, with the hope that by demonstrating success with families, it will receive further funding in the longer term.
Su Smart, Director of Women and Childrens Improvement for NHS Devon, said:
“Developing and expanding this service is part of our wider strategy to ensure children and young people who are neurodiverse can have their needs identified and met without waiting for a diagnosis. This service is helping families receive support and help while they are waiting for a diagnosis. We are really pleased to be able to support the expansion of the keyworker pilot to cover the whole of the NHS Devon area including Torbay, Plymouth and Devon local authority areas.”
The Plymouth Neurodiversity Wellbeing Telephone Advice Line is 01752 435404.