Working with the voluntary and community sector to strengthen the NDD pre-diagnostic support offer in Buckinghamshire

Since 2022, FACT Bucks – the Parent Carer Forum (PCF) for Buckinghamshire – has been working with the local authority (LA) to strengthen pre-diagnostic neurodevelopmental disorder (NDD) support pathways by engaging the voluntary and community sector (VCS) and co-designing support with parents. The existing offer of pre-diagnostic NDD support (for ASD and ADHD) for families in Buckinghamshire was deemed to be insufficient at the time: with diagnoses of ASD rising rapidly in Buckinghamshire over the last decade, 1,500 families were waiting around two years for a diagnosis by 2022, with little or no access to pre-diagnostic support.

Building on existing efforts on the part of the LA, PCF and VCS to work more collaboratively, the local ICB and NHS Foundation Trust played an integral role in mapping existing provision, identifying parents’ and carers’ priority support needs, and providing funding for an initial pre-diagnostic NDD pilot offer developed by the local VCS. Local VCS organisations are now delivering neurodiversity assessments, regular information and guidance programmes for parents and carers, and support for practitioners in settings working with young people with NDD. An online support platform for families on the waiting list for diagnosis will also be available from the end of 2024, and the Designated Clinical Officer is working to embed the new VCS support offer within the wider local area support offer. The work has enabled a shift from diagnosis-led support to earlier capacity-building.

The SEND Effective Practice Evidence Framework considers that the “strength of evidence” of this case study is emerging – the work has been evaluated internally and sustained for two years. The “breadth of impact” of this case study is emerging – there is evidence of impact in one of the four broad areas of impact considered by the framework ^[1].

[1] The SEND Effective Practice Evidence Framework uses two “signal strength” indicators to present the strength of evidence and the breadth of impact of a case study. Each indicator has four bars – emerging, promising, good and robust. The “strength of evidence” indicator is based on how the project has been evaluated and the length of time it has been sustained. The “breadth of impact” indicator is based on whether the case study can demonstrate impact in four broad areas – the more areas of impact, the higher the signal strength indicator.