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

This is a report by Healthwatch Birmingham. The project looks at neurodevelopmental pathways to assessment for children and young people in Birmingham.

This study focused on understanding the experiences of the Autistic Spectrum Disorder (ASD) and ADHD assessment and diagnostic pathways for children and young people in Birmingham, the barriers and challenges they face, the support they receive whilst waiting and what can be improved. The report provides service leads with findings to take forward to improve the diagnostic and support pathway as well as the support provided while people wait.

A questionnaire was co-produced with parents of children going through the ASD and ADHD assessment and diagnostic pathway. The questionnaire was shared through social media, and various stakeholders including Birmingham Community Healthcare NHS Foundation Trust (BCHC), community groups and the Birmingham Parent Carer Forum. One hundred and fifty-two people responded to our questionnaire. We excluded the experiences of those aged 20 – 25 years old as they fall between children and adult services, therefore responses from 137 people were used to write this report. We further explored issues with three of the people through semi-structured interviews. 

Key findings include:

• Acknowledgement that there has been ongoing work in the local area to improve this aspect of care.
• 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.

There are recommendations in this report:

• Improved access to information to help parents and carers support their children.

• All individuals are signposted to available support.

• Ensure continuous contact with a key named professional.

• Work in partnership with parents and carers, with increased involvement and communication.

• Reduce the reliance on diagnosis and develop support making it available to families without a diagnosis. 

There are follow up actions in this report. They include monitoring what happens following publication. The provider has responded to the report.