Experiences of the neurodevelopmental assessment and diagnostic pathway for children and young people in Birmingham

Based on feedback from 137 parents or carers of children and young people with ASD or ADHD, we identified the following issues with the neurodevelopmental assessment and diagnostic pathway:

• Length of wait for the referral and professional support.
• Professionals not submitting documents on time and referrals being missed, further delaying the assessment and diagnostic process.
• Restrictive criteria and thresholds.
• Professionals’ knowledge of the referral pathway – how, when and who to refer to.
• Focusing on parenting style and child’s behaviour rather than the child’s symptoms.
• Poor communication and partnership working with families.
• Lack of support for families before and after diagnosis.

People told us they want to see the following improvements:

• Support families, children and young people to ‘wait well’.
• Increase training and support for professionals referring children and young people for assessment.
• Improve the assessment and diagnosis process.

In response to these findings Birmingham and Solihull Integrated Care Board (NHS BSOL) has committed to taking actions including:

• Developing better resources for parents/carers and young people explaining the support available to people while they wait for assessment.
• Working with 40 schools across Birmingham and Solihull as part of the Partnership for Inclusion of Neurodiversity in Schools (PINS) Project.
• A quality improvement programme focused on improving the assessment and diagnosis process and reducing waiting times.

We would like to thank everyone who shared their experiences. We are also grateful to Birmingham and Solihull Integrated Care Board, Birmingham Community Healthcare NHS Foundation Trust, Birmingham City Council, Birmingham Parent Carers Forum, Accord and all community organisations that helped us reach service users.