NHS England commissioning framework for children and young people with cerebral palsy

The National Health Service (NHS) England has three pillars: (1) quality, (2) equity of access, and (3) cost-effectiveness. Since the Health and Care Act 2022, health funding in England has devolved to 42 separate statutory integrated care boards, each with responsibility for planning, commissioning, and improving health services within their communities of around a million people. With increasing financial limitations in all health and social systems and novel expensive interventions, resources for lifelong conditions, such as cerebral palsy (CP), can become under-resourced. Even within neurosciences there is a skewed distribution of clinical funding in comparison to other conditions, such as stroke or Parkinson disease. On the back of numerous UK CP service reviews, including National Institute for Health and Care Excellence (NICE) guidelines (https://www.nice.org.uk/guidance/ng62; https://www.nice.org.uk/guidance/ng119), National Confidential Enquiry into Patient Outcome and Death (https://www.ncepod.org.uk/2018cn.html), and the All-Party Parliamentary Group CP report in 2023, the NHS England Paediatric Clinical Leaders forum reflected on inpatient metrics for children with CP. Across numerous comorbid services (e.g. ear, nose, and throat; orthopaedics; general surgery; respiratory), up to 40% of children admitted to children's hospitals at any one time had a primary coding of CP. This cost pressure led to the NHS England children and young people's (CYP) transformation team focussing on CP care pathways. The process involved engagement with third sector advocates, patient and parent groups, local authorities, professional organizations, and NHS England commissioning teams on what matters and where funding should be focussed. The work highlighted the many challenges in the system for children and families, with poorly coordinated pathways across community and specialist settings, insufficient staff education (most notably in the foundations of primary care), lack of data acquisition, and poor continuity of care and transition into insufficient adult services. Using national and international exemplars, the NHS England CYP transformation team focussed on how commissioning and clinical partners should collaborate, highlighting the benefits of early recognition and multidisciplinary intervention, and evidence-based, holistic, personalized care within CP practice. Key aspects involved how to reduce system-delays and social inequities, preventing the postcode lottery of service provision. Patients and parents emphasized the importance of accessing the right professionals at the right time. These factors, together with the new 10-year NHS plan (https://www.gov.uk/government/publications/10-year-health-plan-for-england-fit-for-the-future/fit-for-the-future-10-year-health-plan-for-england-executive-summary), stressed the need for services to be provided close to home; improving clinical awareness and patient advocacy; coordinating fragmented pathways within local multidisciplinary, regionally-commissioned and national specialist services; and ensuring implementation of NICE guidelines as a minimum standard. The outcome has been the development of a framework with three key components (https://www.england.nhs.uk/long-read/commissioning-framework-for-children-and-young-people-with-cerebral-palsy). First, commissioning responsibility. Supporting commissioning teams in awareness of what they are purchasing; preventing inequity of access and increasing understanding of pathways; and highlighting any gaps within local integrated care board and regional networks. In a system where relatively small commissioning teams are responsible for funding every aspect of diverse health care, the needs of the chronically disabled population can lack focus and inefficient services continue on an underfunded historical basis, without adequate quality or outcomes. Second, clinical responsibility. Encouraging different professional organizations to reflect on what is and is not good practice in their own and cross-disciplinary areas of care; reducing waste and duplication, improving collaboration, and reducing competition. Creating a coordinated approach to the patchwork of care provided for CYP and adults with CP, with a clear reflection on partnership, expertise, evidence-base, and outcomes. Third, transformational responsibility. Historically, clinicians have little knowledge of finance and commissioning, and commissioners have little knowledge of their diverse clinical pathways. We need to ensure that patient voice, third party advocates, clinicians, management, and commissioners understand their roles and what is required; communicating clearly, working together on service delivery to the benefit of all effected by CP; initiating conversations between those who commission services, those who provide them, and those who they impact. We can be so busy that we ‘do what we do’, with insufficient headspace to focus on pathway development, and so rely on national and international guidelines – but these are pointless without front-line implementation. Unfortunately, there is no magic money-tree for criterion-standard wish-lists, and the reality is that clinical teams need to work closely with those who manage local, regional, and national resources on cost-effective pathways of care, ensuring optimal outcomes and equity of access for individuals with CP and their families. We have to acknowledge that many aspects of our practice have no evidence and inappropriate variance and that system reorganization is as important as pushing the boundaries of quality care. It is part of our clinical responsibility to reflect, communicate, and encourage genuine partnerships. Not required.