This month, NHS England has published its long-awaited Commissioning framework for children and young people with cerebral palsy. The framework provides a blueprint for high-quality integrated services to improve early identification, assessment and intervention which can significantly improve outcomes for babies, children and young people with cerebral palsy.
The Institute of Health Visiting has been actively involved in national groups and All Party Parliamentary Groups calling for measurable improvements to be made to services. We are therefore delighted to see this framework published – it represents an important milestone in bringing together a united vision for service improvements, supported by leading clinicians and the voices and views of families, underpinned by the latest evidence and NICE guidance.
Health visitors have been identified as having a key role to play in improving joined-up support for families. And we encourage health visiting practitioners, service providers and commissioners to work with their local Integrated Care Boards to support the successful implementation of this framework.
While this framework focuses on children and young people with cerebral palsy, it is hoped that learning from developing and implementing this framework could be extended to address broader conditions, including neurodevelopmental needs and care requirements of children and young people with other complex conditions and disabilities.
To support ICBs to improve care, NHS England has worked with key stakeholder organisations, including children and young people and their families and carers, to ensure that the recommendations made within the framework align with their feedback.
Background to the framework – why focus on cerebral palsy?
Cerebral palsy is the most common childhood onset disorder of movement and posture. As a chronic condition, the challenges remain throughout adult life. There is a clear imperative to improve healthcare for children and young people with cerebral palsy. Services are currently fractured, complex to navigate, and often uncoordinated. Many children are diagnosed late and miss out on vital support that can improve their development and health outcomes – any delay in identification and treatment can worsen life-long function, increase secondary complications, and decrease clinical wellbeing. It can also lead to the need for more invasive orthopaedic interventions later in childhood, requiring costly prolonged admission and rehabilitation. As a direct result of delayed assessment and intervention, children and young people and adults with cerebral palsy often experience diminished participation and quality of life.
Improving healthcare and outcomes for children and young people with cerebral palsy will require a whole system response and ICBs should collaborate to provide various services within their local area or through partnerships with key regional stakeholders. The framework sets out suggested services and professionals who will need to work together to implement the framework and ensure effective collaboration.
Spotlight on the role of health visitors:
Health visitors have a key role to play in early identification of infants at risk, or with “red flags”, of cerebral palsy to support early diagnosis and intervention. Health visitors also have a key role in connecting families to other services and specialist teams, brokering their engagement, and supporting families to navigate the numerous challenges that they often face when trying to access the care they need.
The framework identifies the need for comprehensive training and education programmes, with specific areas of focus to include:
- co-ordinating training for the follow-up of high-risk infants post-special care baby unit
- developmental follow-up of all children by health visitors and general practice staff
- health visitors should be trained to spot the early warning signs (“red flags” in NICE guideline – NG62)
- the involvement of community paediatricians
- local pathways for initiating referrals and assessments, emphasising the importance of supporting children and young people with cerebral palsy and their parents and families
- supporting early intervention – primary care teams, GPs and health visitors to provide universal care.
Next steps:
NHS England is working with a number of volunteer ICBs to baseline and assess their current service provision, using a short list of metrics and the framework as a benchmark for standard of care. Alongside this, they are working with clinicians from the key professional bodies involved to reflect on and assess their clinical best practice. This includes but is not limited to: British Paediatric Neurology Association, British Academy of Childhood Disability, British Association of Community Child Health, and the Institute of Health Visiting.
Coming soon – iHV training and resources for health visiting teams: The iHV has been working with leading paediatricians and experts in motor development and neurodisability to develop a “Motor Development Toolkit” for health visiting and bespoke training which incorporates the key recommendations outlined in this framework. Our resources and training are due to be launched at the end of June. Look out for further details on our website and via social media – or contact us at [email protected] to discuss your workforce CPD needs.
