Agenda item

The Committee considered a report of the Corporate Director of Children and Young People’s Services which provided information regarding work undertaken through the Starting Well Partnership (SWP) to support families of neurodivergent children and young people (for copy of report and presentation see file of minutes).

The Committee welcomed Alison Ayres, Commissioning Delivery Manager, to the meeting to present the report and deliver a presentation on the Valuing Neurodiversity in County Durham project. 

The Committee noted that over 4000 children and young people are currently waiting for a neurodiversity assessment in County Durham.  The term neurodivergent refers to the ways in which the brain functions which can manifest in a number of ways including Attention Deficit Hyperactivity Disorder (ADHD) and Autism and the waiting time for diagnostic assessment is approximately 48 months. 

Challenges exist around managing the expectations of families who often expect to see a change after diagnosis and this expectation places additional pressure on the diagnostic team.  Engagement with families has also identified they experience difficulties in navigating the system and families do not always receive accurate information and advice.  Therefore, it is clear that the system requires improvement and the vision for the Valuing Neurodiversity project is that needs should be met at the point of identification, without the need to wait for a formal diagnosis and for the system to move away from a diagnosis-led model to a needs-led model. 

The Committee noted the governance behind the project which reports into the Mental Health, Learning Disability and Autism Partnership and Think Autism Strategy Group. Initial work to identify available training, map current support and support for education settings is underway and sub groups namely Training, Communications and Engagement, Support Offer Mapping and the Support in Schools Pilot, will deliver the work.  The work which, in effect, is a culture-shift, is expected to take 3-5 years to complete. 

The Commissioning Delivery Manager referred to a discussion that had taken place with the Chair prior to the meeting regarding the rate of neurodiversity within young people known to the Youth Justice Service. 

The Commissioning Delivery Manager confirmed that when referrals are made to Tees Esk and Wear Valley NHSFT a risk assessment is carried out and being known to the Youth Justice Service forms part of the risk assessment.

The officer was thanked for the presentation and questions and comments were invited.

Councillor Lines spoke in support of the project, however, he was concerned that the work may lead to a move away from gaining a diagnosis and he pointed out that diagnosis is often the key to the most appropriate support pathway. Councillor Lines commented that young people with neurodiverse conditions may mask their symptoms which can make it difficult for parents, carers and education staff to accept that a problem exists. Councillor Lines also commented that the support offer in schools can vary and he added that when a young person receives the right support it can vastly improve not only their education experience but also that of their fellow-pupils and teaching staff.

The Commissioning Delivery Manager explained that part of the work of the Support in Schools Pilot aims to investigate identification and recognise that schools must understand that young people can mask neurodivergent behaviour and that schools play a role in supporting parents’ views.

Councillor Quinn referred to misbehaviour in younger children which may be mistaken as symptoms of neurodiversity, however, it could be that the child is developmentally delayed and they require additional support to manage their feelings. Councillor Quinn commented that education staff play an important role to work with and support families and she stressed that children and young people who may be displaying neurodiverse behaviour should be supported and not stigmatised or excluded from activities in school.  The Commissioning Delivery Manager agreed to discuss the issues in more detail with Councillor Quinn, following the meeting.

Mrs Gunn emphasised the work should be clear in its objectives and she raised concern that the plans may lead to ceasing the diagnosis of  neurodiverse conditions in the future. Mrs Gunn echoed Councillor Lines’ comments regarding the benefits of gaining a diagnosis, including access to medication which can have a positive impact on the young person’s outcomes.  She acknowledged that a diagnosis can be a ‘double-edged sword’ in that it can be a label with negative connotations however, it can also be the key to understanding how a young person is feeling or behaving. Mrs Gunn also asked if other conditions such as dyslexia and dysphoria are included in neurodiversity work.

Mrs Gunn raised concerns anecdotally that some GPs in neighbouring authorities were no longer entering into shared care agreements and she questioned whether this would lead to Durham taking a similar stance. The Commissioning Delivery Manager officer agreed to follow up the points raised after the meeting.

Councillor Varty welcomed the Support in Schools Pilot and spoke of her experience with families who had reported receiving different levels of support. 

Councillor Hovvels referred to the different levels of support in schools and academies and whilst she welcomed the work of the project, she expressed concern as to how the work would be funded and the increasing number of children and young people with special needs. Councillor Hovvels noted that a number of families out of county seek places in County Durham schools in order to access the appropriate support for their children.  In response to a question from Councillor Hovvels as to why the Support in Schools Pilot was targeted at primary schools as opposed to early years provision, the officer explained that it was considered that more robust data would be available through primary school settings due to the large amount of private nursery provision.

Resolved: 

1.    That the joint Children and Young People’s and Adults, Wellbeing and Health Overview and Scrutiny Committee received the report and presentation and provided comment.

Further to the comments made during the discussion, the following additional recommendation was agreed:

2.     That members of the Children and Young People’s and Adults, Wellbeing and Health Overview and Scrutiny Committees receive regular updates on the progress of the Valuing Neurodiversity in County Durham project.