In May 2025, the NHS England has developed and published a Framework for commissioning services for children and young people living with cerebral palsy. The Framework simplifies and summarises existing guidance available, highlights best practice pathways of care that could be replicated by other systems and enables systems to identify population need through data.
Cerebral Palsy is the most common childhood-onset disorder of movement and posture, impacting development, function, and physical and mental health. As a chronic condition, the challenges remain throughout adult life. Children and young people with cerebral palsy typically experience below-average health outcomes and nearly all individuals living with the condition will have at least one co-morbidity. An increasing number of children are not being diagnosed with cerebral palsy through existing screening processes until they are in school, leading to delays in access to treatment and care.
The work on this Framework has drawn heavily from the evidence presented to and the report of the All Party Parliamentary Group on Cerebral Palsy, that Action Cerebral Palsy initiated and was the lead sponsor of. The recommendations from the initial APPG report informed the content of the Framework. Action Cerebral Palsy was pleased to be involved in the development of this new Framework, and in particular, in facilitating parent and young person engagement to ensure that the recommendations made within the Framework align with what they would like from their care.
“The challenges of supporting families, children, young people and adults affected by cerebral palsy has been highlighted by recent work carried out by the APPG and NICE.
In order to improve equity of access for assessment and interventions in a timely fashion, the Children and Young People transformation team and Children’s Neuroscience Clinical Reference Group at NHSe have worked with a number of third party and professional stakeholders to develop a framework of expected clinical provision and commissioning for local and regional services.
The hope is that this will enable communication to facilitate early access to appropriate services and reduce the imbalances in health care, minimising duplication, improving outcomes and most importantly the quality of life for all involved.” – Dr. Charlie Fairhurst, who alongside Professor Simon Kenny, led the NHS England Children and Young People’s Transformation Programme team who developed the Framework. Dr. Fairhurst and members of the CYP Transformation Programme team are pictured with Action CP CEO, Pilar Cloud, at the Parliamentary launch of the Action CP 2024 Election Manifesto in May 2024
This Framework should be used by Integrated Care Boards (ICBs) to aid the commissioning of higher quality services for children with CP, acting as a benchmark for standard of care. A number of ICBs are now carrying out a baselining exercise throughout the remainder of 2025 and the first half of 2026, using the Framework as a standard of care and a set of metrics to add their baselining. Although the Framework specifically addresses children and young people with cerebral palsy, it is hoped that the insights gained from its implementation could be applied to other conditions, including neurodevelopmental needs and the care requirements of children and young people with other complex conditions.
How You Can Get Involved?
Action Cerebral Palsy is calling upon Government Ministers and MPs to share this Framework widely through their established networks and specialist health policy audiences within their regional ICS. Parents, carers and young people, please do contact us with your experience of the care and services you are currently receiving.
