Matt Carter discusses a new early intervention and support-led model for neurodivergent children and young people, driven by true system working.
Across the UK, there are thousands of children and young people on waiting lists for neurodevelopmental diagnostic assessments:
Children are sometimes waiting years for a diagnosis, which can delay them from getting the support they need. In community health services, the median wait for a diagnosis was two years and three months. Almost half of children (41%) waited over two years for their diagnosis, of which 17% waited over four years.
While they wait for a clinical appointment, many of these children and young people are not receiving any support. This lack of appropriate help is likely to result in poorer outcomes. And if no action is taken, these numbers and timescales will inevitably increase.
In Kent and Medway, a system-wide programme is underway to implement a new approach to supporting neurodivergent children and young people. This seeks to provide tailored packages of support for families at the start of their journey, while helping parents, carers and schools can help children gain a better understanding of themselves.
By supporting children with neurodivergence at an early stage, many of the potential co-occuring issues - for example mental health and behavioural problems, learning delay or involvement with the criminal justice system - can be prevented or mitigated. It is hoped that providing tailored support and resources to families early on can also improve a child's development and well-being, reducing the need for specialist clinical intervention.
A cultural shift is key
The cultural shift in Kent and Medway has only been made possible by the collaboration of system partners. Education, primary care, commissioning, and NHS community provider colleagues have been working together to define the new approach, sharing learning, and greatly increasing insights into each sector’s aims and issues. We already know that having a shared purpose is key to successful collaboration, but the programme has also focused on tackling myths and barriers to change.
For example, one of the most persistent myths is the perception that a clinical diagnosis is the only way to access support - a so-called ‘golden ticket’. In Kent and Medway, engagement with schools, NHS teams and families is underway to clarify that there is no support that cannot be accessed without a diagnosis, including Education, Health and Care Plans (EHCPs) and special education placements. Instead, the system is shifting focus away from diagnosis to bespoke support based on individual needs.
This change in mindset encourages a more inclusive and supportive environment, particularly in schools, for children with neurodivergence. It recognises that every child is unique, and that timely support can make a significant difference in their lives.
Breaking down barriers
Although the approach in Kent and Medway is not unique, and some healthcare systems are already reporting positive outcomes from similar models, I think that the shift to genuine system working in Kent and Medway has been remarkable.
On many of the transformational and collaborative programmes I have been involved in, there is initial, and understandable, resistance from stakeholders. However, in Kent and Medway, one of the challenges has been managing the sheer number of system colleagues wishing to become involved. I have observed leaders and managers from Health and Education shift to a shared language and a focus on removal of unintentional perverse incentives. For example, at a recent system event, there was agreement to move away from the traditional NHS term ‘pathway’ to the agreed term ‘approach’, reflecting an acknowledgment that a linear, clinical model would not be effective.
This has proved to me that system working, although not always easy, can challenge old ways of thinking and highlight processes and service design that are no longer fit for purpose.
The culture shift ongoing in Kent and Medway has also resulted in increased collaboration within the NHS itself, with the Integrated Care Board working side-by-side with providers. The providers themselves have increased alignment and implemented standardised approaches across the system, and strengthen their relatinships with Primary Care and Education. These partners are now beginning to see tangible benefits in a reduction in the fragmentation and variation resulting from historical commissioning arrangements.
What next?
The shift to system working in Kent and Medway is a significant step forwards in terms of culture, collaboration, and shared learning. The focus is now on continuing to change practice at the ground level, removing persisting myths and assumptions, and ensuring families feel more supported and able to access the most appropriate support.
By providing support early and focusing on individual needs, Kent and Medway are paving the way for a brighter future for all children and young people.
Matt Carter is Principal Consultant at Mutual Ventures, a consultancy that specialises in transforming public services. For more on our work in the NHS and to hear about how we could help your organisation, contact matt@mutualventures.co.uk.
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