PCF CWaC highlighted in our recent survey the emotional toll it taken on families around long wait times and concerns over eligibility and referrals process and having your child’s needs identified early by professionals.

Your voice is continuing to be feed into this process.

Coordinated Efforts Across Cheshire & Merseyside

The Cheshire & Merseyside Neurodevelopmental Network is becoming the central coordinator for neurodiversity work across the region. Despite the complexity of engaging at both local and regional levels, the network is streamlining efforts to ensure consistency. A crucial ADHD and Autism workshop held on July 15th emphasised the integration of health and education services, with a goal of developing a unified model by December 2024.

Portsmouth Model Influences Local Strategy

The Portsmouth model, which focuses on a needs-led approach rather than a diagnosis-led one, has been well-received as a framework for Cheshire & Merseyside. The Portsmouth Model is a needs-led framework that prioritises providing support based on individual needs rather than waiting for formal diagnoses. It allows for **immediate interventions and adjustments** in mainstream settings, particularly helpful during long waits for ND (neurodevelopmental) assessments. While complementing the ND pathways, it also offers valuable insights for paediatricians, aiding in diagnosis by providing a clear understanding of a child's developmental needs. This ensures that children receive timely, tailored support while awaiting formal diagnoses like ADHD or autism.

Challenges with Long Waiting Times & Transparency

 The network acknowledges the long waiting times for assessments and is shifting its focus toward addressing immediate needs rather than solely waiting for diagnoses. The term “Waiting well” is under reconsideration due to mixed reactions from those with lived experiences, and alternative terminology is being developed. Additionally, there are significant disparities in how waiting times are communicated across service providers. For example, Cheshire and Wirral Partnership NHS Foundation Trust (CWP) makes its data publicly available on the MyMind website, while other providers like Mid Cheshire Hospitals NHS Foundation Trust (MCHT) and East Cheshire Trust (ECT) do not offer similar transparency. ECT currently has 120 patients on its waiting list with an approximate one-year wait time, while MCHT's wait time for Autism assessments is around 15 months.  There are varying degrees of transparency in how waiting times are communicated across service providers. Efforts are being made to ensure more consistent and accurate reporting to provide families with clear expectations and timelines.

 Innovative Local Practices

Cheshire and Wirral Partnership NHS Foundation Trust (CWP) is pioneering several innovative practices to improve the quality of Autism and ADHD referrals. These include close collaboration with schools, offering drop-in sessions for parents, and providing person-centred feedback after assessments. Additionally, new resources like guides and educational films are being developed with parents and neurodiverse children and young people to better support families and young people.

Reducing Inequalities in Service Delivery

 The network is working to prevent inequalities across Cheshire by encouraging providers to share best practices and learn from each other. An upcoming all-day workshop will focus on unifying service delivery approaches, addressing disparities, and ensuring consistent support across the region.

 Enhanced Communication and Information Initiatives

 A new project, led by local parents and professionals, is underway to improve communication resources across Cheshire & Merseyside. The project, expected to deliver new materials by November 2024, aims to align professional practices with parental perspectives and ensure better information sharing with families.

Intersection of Mental Health and Neurodiversity

Recognising the growing complexity of needs, the network is dedicating time in each meeting to discuss the crucial link between mental health and neurodiversity. This focus will help in developing more holistic support strategies.

Next Steps and Local Focus

There will be a Cheshire East Place-based meeting and Cheshire West Place-based meeting established. Although some providers are shared across Places, there are needs, issues and data that need focus at Place-level to feed into Cheshire & Merseyside workstreams.

Place-focused meetings will address specific local needs, ensuring that these are integrated into broader Cheshire & Merseyside initiatives. The network is committed to maintaining transparency, improving communication, and reducing inequalities as it moves forward.

PCF CWaC

There is a wealth of work being undertaken at Place level and Cheshire & Merseyside level.

We will continue to feedback parents voice into these workstreams. PCF thanks the professionals for listening and acting up on the concerns that the PCFs from both West and East continues to highlight. 

Furthers updated will be communicated.

If you have questions or want to share your experiences of the pathways, please do not hesitate to contact me,
Lucy Kennerley

If you have any questions, please email us at: contact.pcfcwac@gmail.com or call 07900 840867

To read our 2024 PCF survey and report please

click below