WINNER - Co-production to support neuro-developmental services in Gwent

Aneurin Bevan University Health Board

The neuro-developmental service for children and young people in Gwent has received an increasing volume of referrals requesting consideration of a neuro-developmental assessment. Consequently, there is a long waiting list for assessment. It has become increasingly important to understand the needs and views of parents on the neuro-developmental waiting list as to how they could help Aneurin Bevan University Health Board (ABUHB) with improving the service. There was also a need to empower parents while they were waiting for their child to be assessed and, therefore, a strengths-based approach was needed.

A group was established in March 2022, with the Children and Families Transformation Lead acting as the conduit between parents / carers, ABUHB, Parents Voices in Wales and the wider partnership. This ensured equity within the group and nurtured the feedback loop. Since it first began, the group has grown and evolved both in terms of their functions and also the efficiency.

Feedback from the group has led to a number of changes within the neuro-developmental pathway for children and young people including: a re-design of the referral pathway and its accessibility, completion of a ‘Frequently Asked Questions’ document around the current process for other parents to help them understand the process, a re-designed information leaflet for families entering the pathway, and creation of a pathway animation specifically targeted for children entering the neuro-developmental pathway to explain what to expect in a child friendly way.

Over the last 14 months, the group has been growing from strength to strength. The parents chair the group and work in partnership with colleagues in Health on developing services and implementing change. Parents are now running groups to support other parents who are in a similar situation, and regular events are held to review progress and monitor outcomes.