Case Study: Kent and Medway Children and Young People's Neurodivergence Transformation Programme

Client: NHS Kent & Medway Integrated Care Board

Date: April 2024 - March 2026

Challenges faced by the client:

At the start of the programme, Kent & Medway’s Children and Young People’s (CYP) Neurodivergence (ND) pathways faced significant system-wide pressures. Waiting times for assessments across NHS providers were long, with limited support available to CYP and families while waiting, adversely affecting experience and outcomes. Demand was rising rapidly, with the National Autistic Society reporting a 47% increase in autism waiting lists in a single year, and many CYP appeared on multiple waiting lists simultaneously, compromising data quality and reporting.

There was no consistent pathway for managing demand, and practice varied across the four main NHS providers (KCHFT, EKHUFT, NELFT and MCH). Shared Care arrangements for ADHD medication were inconsistent. Increasing numbers of families were seeking private diagnoses without full awareness of the implications, particularly around prescribing. A whole-system, clinically led response was required.

Support offered:

Mutual Ventures (MV) led the programme across two years, delivering sustained system-wide transformation in partnership with NHS Providers, Kent County Council, Medway Council, Primary Care, Education, Parent & Carer Forums, and regional NHS England leads. MV provided overall programme management, ensuring progress against agreed priorities and timescales, and co-ordinated, facilitated and chaired all provider meetings, including the very well attended Clinical Away Day in December 2024. Key workstreams included:

• Governance & vision: Established comprehensive CYP ND Transformation Programme governance structure, including the Steering Group (co-chaired across NHS and Local Authority), and the underpinning working groups: NHS Providers, Communication & Parent Voice, This Is Me, Care Navigators, Evaluation & Research, and PINS, each with formal Terms of Reference.

• Waiting list management & prioritisation: Led the development, iterative refinement and implementation of revised Prioritisation Criteria. Co-ordinated waiting list reviews, and validation of waiting lists.

• Clinical leadership & alignment: Convened clinicians from KCHFT, EKHUFT, NELFT and MCH to secure system-wide consensus on clinical issues. Facilitated the Clinical Away Day in December 2024 to align standards and build a united provider approach.

• Right To Choose: Led the system-wide discussion on Right To Choose (RTC), producing a standardised approach for historic and future RTC referrals, with legislative context agreed and a formal output report circulated.

• PCN Care Navigators & Primary Care engagement: Supported five PCN pilots with activities ranging from Health Coaching to creative arts programmes. Engaged Kent LMC and the Kent & Medway Health & Care Partnerships to secure strategic primary care representation.

• Digital Innovation Programme: Launched and led a dedicated digital innovation workstream evaluating AI-assisted tools, automation, and various digital referral management platforms. Engaged with Professor Sebastian Gaigg, NHS England National Research Lead for Autism, around the ICF Core Sets for Autism and ADHD.

• System Resource: Connected NHS Providers with MHSTs, Salus and North Kent Mind (incoming provider of the Medway Therapeutic Alliance from April 2026), ensuring a joined-up pre-diagnostic offer, shared resources and coordinated referral routes.

• Expedition Process: Developed proposals for a new system-wide expedition process, including the establishment of an Expeditions Panel with NHS and Local Authority membership, and a separate process for medication review.

• Neuro-affirmative practice: Supported provider teams in adopting neuro-affirmative language and practice, including glossaries and diagnosis letters written directly to children and young people alongside the clinical report to parents.

Outcome achieved:

By the close of MV’s engagement in March 2026, the programme had delivered substantial and lasting change across Kent & Medway. A fully ratified CYP ND Transformation governance structure was operating across the whole system, with clearly mandated working groups. Revised Prioritisation Criteria had been implemented across all NHS providers, and the new Integrated Neurodevelopment Support Model for Children and Young People (“This Is Me”) had been rolled out across Maidstone, with evaluation frameworks in place.

A Digital Innovation Programme was delivering evaluation of digital platforms and active engagement with NHS England’s national autism research lead. Clear system positions had been agreed on emerging issues including Pathological Demand Avoidance and private assessments.

Most significantly, the programme established durable, sustainable working relationships across NHS Providers, Kent County Council, Medway Council, primary care, education, and parent and carer forums, leaving Kent & Medway with both the structures and the system culture needed to continue the transformation beyond MV’s involvement.

Client quotes:

Nikki Clark, Director of Specialist Services, Kent Community Health NHS Foundation Trust:

“You have been a great support to us and we could not have achieved as much as we have without you”.

Dr Oluwafemi Ogunbona, Consultant Community Paediatrician, Designated Doctor for Safeguarding Children, Kent and Medway ICB: “Thank you for your amazing patience with us all.”

For more information on Mutual Venture's work supporting the Kent and Medway Children and Young People's Neurodivergence Programme, see our recent article: Changing the Culture: a new approach to supporting children with neurodivergence

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.