Children and young people in Birmingham struggling to get support for Autism and ADHD

Health and social care services in Birmingham are failing to provide the care many children and young people with Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder (ADHD) need and deserve, with parents and carers reporting waits of a year or more for assessment and diagnosis, problems getting referrals and a lack of support to help them care for their child.

Based on feedback from 137 parents or carers of children and young people with ASD or ADHD, the Healthwatch Birmingham report Experiences of the neurodevelopmental assessment and diagnostic pathway for children and young people in Birmingham identified issues including:

• 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 local NHS services have 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.

Healthwatch Birmingham will be monitoring the progress of these improvements, to help ensure all children and young people with ASD and ADHD can get the support they need.

‘As a society we have a responsibility to ensure that every child has the support they need. Our report shows that we are failing in that responsibility. This is put in stark relief by one of the parents who shared their views with us, who felt the long delay in getting her child referred and assessed was “robbing” her of the chance to enjoy her secondary school years.

Issues around shortages of the staff needed to meet the ever increasing demand for neurodiversity assessments that lie at the core of these delays cannot be resolved in Birmingham alone. We call on the new government to identify and take the immediate and long-term action necessary.

But, as many parents told us, there are also things that can be done locally.

There must be a change of approach from one that is diagnosis-led to one which focuses on the needs of those seeking help. Care and support must be offered in a timely way, whether families have received a diagnosis or not.

Local services have told us they understand this. Local services have told us they understand this, but must now translate that understanding into improving practical support.’ – Richard Burden, Chair, Healthwatch Birmingham