1800 An educational project to develop and coproduce NDD post-diagnosis resource pack for children and families (Besag, 2021)

C Yemula, K Head, F Omisakin, F Besag, A Abouelnaga, T Long, L Rosseter, T Mirza, K Rennie, S Phillips, S Walsh

BMJ

Available online at this link

Neurodevelopmental disorders (NDD) are a complex group of conditions that include ADHD and autism as common presenting problems in childhood; they are frequently associated with comorbidities such as behavioural, sensory and sleep difficulties, resulting in a negative impact on the quality of life of the affected individual.

Families have described the experience of receiving a diagnosis for their child as ‘like a bereavement’ and following the lengthy diagnosis process are often left with little information, or understanding of ‘what next?’. Having a diagnosis can also help the families understand limitations but also celebrate the strengths and additional support that this brings to their lives.

Families that use the community paediatric service across Bedfordshire and Luton have participated in many service improvement projects and contributed via feedback channels such as focus groups, parent panels and family and friends test surveys. A key theme highlighted by these families was a need for information, resources and support post diagnosis of a neurodevelopmental disorder.