Written evidence submitted by Action Cerebral Palsy (FTDOO76)

Action Cerebral Palsy submission to the Health and Social Care Committee Inquiry:

The First 1000 Days: A renewed focus

Introduction

There are approximately 30,000 children and young people with cerebral palsy (CP) in the UK. 

      1 in 3 is unable to walk.

      1 in 10 has a severe vision impairment.

      1 in 4 is unable to talk.

      1 in 2 has an intellectual impairment.

      The UK rate of diagnosis has remained constant for decades, so that approximately 1:400 children born in the UK will be diagnosed with CP (based upon the most recent data for live births, that means just over 1,700 children).[i]

Cerebral Palsy (CP) is a lifelong and fluctuating neurological condition which can affect those from all social background and social groups. The condition affects movement, balance, co-ordination and posture and is caused by abnormal development or damage to the parts of the brain before, during or soon after birth.

Cerebral palsy is the most common cause of lifelong physical disability starting in infancy. Despite this, there are often unnecessary delays in the early identification and referral of infants. This prevents effective early intervention treatments from taking place at the time when they can have the most impact. A key reason for this is a lack of awareness of the early signs of CP amongst the general public and some primary healthcare professionals. Additionally, there are unacceptable variations in the quantity and quality of care provision across the regions which lead to a post code lottery for children and families.

In 2017, NICE published guidelines on the assessment and management of CP in children and young people with CP[ii], but these are not mandatory.  As a result, practitioners and clinicians at local levels are not fully aware of their responsibility for prompt referral to expert multi-disciplinary teams. In October 2024, the Children’s Commissioner published a report on the waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions[iii]. This revealed that children with CP have the longest mean waiting time between referral and diagnosis of all neurodevelopmental conditions – 1222 days/3 years and 4 months and the second longest waiting time between referral and first contact – 827 days.

There is now a substantial body of evidence showing that CP and associated neurodisabilities are highly responsive to early intervention, when plasticity in the child’s developing brain is at its greatest. Infants and young children with CP need early identification and early intervention to improve life outcomes, minimise secondary complications, and achieve their maximum quality of life. However, early intervention remains the exception rather than the norm. Not only does delayed intervention lead to a worsening of symptoms, it can also increase the need for multiple aggressive and costly interventions such as surgery further down the line. As a direct result, children and young people with CP often experience a diminished quality of life attributed to the consequences of delayed intervention.[iv]

A key reason for this delay in identification is a lack of awareness of the early presenting features of cerebral palsy amongst primary healthcare professionals, as well as the general public.

“The training curriculum for GPs on children and young people does include some mention of normal developmental milestones, including gross and fine motor skills and normal growth, but there is no indication that missing these developmental milestones is a potential sign of cerebral palsy, as well as abnormal or fluctuating tone or asymmetry, as symptoms and signs of abnormality. The curriculum does not sufficiently equip GPs to act promptly and refer infants in line with the NICE Guidelines.”[v]

Up to 50% of all infants with CP are not identified as being high risk for the condition at birth, and their needs are not addressed through any developmental surveillance scheme as they grow. It often falls to parents to raise their concerns with healthcare professionals (HCPs) who often provide a ‘wait and see’ approach.  Parents and front-line HCPs need the practical tools to understand what is typical and atypical to enable these children access to more rapid onward referral. 

Action Cerebral Palsy (www.actioncp.org – Registered Charity Number: 1165217) is the only charity which advocates solely on behalf of children and young people with cerebral palsy and their families.  Since 2012, Action CP has sought to establish the facts about the level of provision of care for children with CP through Freedom of Information reports, surveys and consultation with our population and to raise awareness of the issues facing these children and their families and communicate the findings and recommendations for change to policy makers.  We work in close collaboration with expert clinicians, first-line healthcare professionals, therapists, education and special education professionals, other third sector organisations and with parents, carers and young people.   Until the campaigning initiatives of Action Cerebral Palsy, there had been no unified voice or platform for cerebral palsy clinical and educational professionals and the parents of children with cerebral palsy to draw together a coherent case for policy makers for improved provisions and reform to improve early identification, intervention, education and pathways of care for children and young people with cerebral palsy. 

From 2020 to 2023, Action CP was the lead sponsor of the first-ever All Party Parliamentary Group on Cerebral Palsy.[vi]  To quote from the introduction of the APPG on CP report on: Early Identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment[vii]:

“Cerebral palsy and associated neurodisabilities have been widely demonstrated to be highly responsive to early intervention, when plasticity (ability to change) in the child’s developing brain is at its greatest. Failure to intervene early represents a significant cost, both to the child, and to the Treasury later down the line, when considering the costs of care and support throughout life, and, of course, an enormous personal cost to the families involved. Despite this, effective early intervention remains the exception, rather than the norm, in the UK, and families struggle to navigate complex pathways of care that often do not even meet the minimum standards set out in the NICE Guidelines for cerebral palsy. There are shining examples of best practice and we commend and celebrate the excellent work of practitioners across the UK delivering these, but significant reform is needed to enable such excellent examples of care to become accessible for all children. Families require more support as they navigate the diagnostic, referral, and care process, to empower them to access the best care for their child at what is a deeply distressing time for parents. More data on cerebral palsy in the UK is essential in improving outcomes, too.”

This Action CP submission to the new Health and Social Care Committee inquiry into the First 1000 Days will be focused on those areas of most concern to these young children, and the information contained in this submission has been compiled from evidence gathered from over 200 families, young people and professionals and academic research for the All Party Parliamentary Group on Cerebral Palsy, our Freedom of Information Act reports[viii], online and in person surveys, as well as through our direct professional, parent, carer and young person engagement.

Inquiry Questions:

1. What should the Government prioritise in upcoming funding allocations for early years services? 

Action Cerebral Palsy evidence: The current healthcare system for identifying and supporting children and young people with CP and other complex disabilities requires several reforms to improve consistency, accessibility, and available resources. NHS England Children and Young People’s Transformation Board Task Force on Cerebral Palsy has developed a promising framework for the commissioning of care and services for CYP with CP for Integrated Care Systems[ix] which will be underpinned by improved, albeit still limited, data collection.   While we appreciate that the healthcare model for CP, as a complex disability, will not fit into an ‘one size fits all’ approach, this NHSE initiative could provide a blueprint for mandatory pathways of care for all children with neuro-developmental conditions and therefore requires support and ongoing funding for the ICS. 

We ask the Government to prioritise the following with their early years’ service funding:

1. Healthcare workforce skills improvements:

      Provide training on typical and atypical early motor development for non-specialist healthcare professionals such as GPs, community paediatricians, health visitors and social workers.

      Ensure that the Personal Child Health Record (or “Red Book”) includes clear information on typical motor development to support parents and health visitors to know and look out for the warning signs will also enable more rapid onward referral.  NHS England was on the verge of piloting a digital Red Book that would have included information about motor developmental milestones but this was put on hold due to budgetary constraints in 2024.

      Ensure that the Healthy Start, Start 4 Life and Family Hubs print-based and online support materials also include information about motor development. 

2. Strengthening the Workforce:

      Investing in the Health visiting workforce - The number of health visitors in England has been cut by more than 40% since health visiting services were moved from the NHS to local authority commissioning in 2015[x].  Health visiting is the only statutory “health” service provided to all children in the early years. Historically, health visiting used to provide the “backbone” of preventative and early intervention “health” service – with very clear standard operating procedures on the transition of health care and accountability from midwifery to health visiting, the postnatal period, and SEND. The current commissioning guidance is now very weak, the “health” element is unclear and there is a lot of confusion around the role of the health visitor as a statutory public health service (and how this differs from the role of voluntary groups). The lack of clarity and cuts to the service started when health visiting was shifted to local government but has become considerably worse and more fragmented since the Leadsom review in 2021 (despite health visiting being listed as one of 6 essential services).  There is a wide and unjustified variation in the level of health visiting support based on where people live rather than their level of need.

      Investing in the paediatric physiotherapy, occupational therapy, speech and language therapy, and school nursing workforce, all of whom play a vital role in the early identification and supporting timely, expert and consistent intervention services for young children with cerebral palsy and all have seen their workforces depleted[xi].  The Government must urgently invest in these vital paediatric workforces to increase their size and capacity and offer specialised training in the early signs of movement difficulties in infants.  Where there is inadequate provision or lengthy waiting times within the local statutory sector, health services for assessment and intervention, families should have prompt access to expert services provided by the voluntary sector.

2. How effective have Family Hubs and the introduction of integrated care systems been in improving early childhood outcomes?  

Action Cerebral Palsy evidence:  There is much work to be done here, and Action CP calls upon the Government to implement existing legislation, healthcare guidelines and the NHSE ICS Framework: commissioning services for children and young people living with CP, including:

      All Integrated Care Systems should use the soon to be published NHS CP Commissioning Framework as a supportive and effective tool to aid the commissioning of high-quality services for children aged 0 – 18 with CP - Implementation of this framework in all regions will reduce duplication across services and ensure cost and clinically effective, evidence-based practice which will promote best outcomes for infants and CUP with or at risk of neurodisability such as CP.

      Make the existing NICE guidelines mandatory to ensure that practitioners and clinicians at local level are fully aware of their responsibility for prompt referral to expert multidisciplinary teams.

      Ensure that Family Hubs print-based and online support materials also include information about motor development

3. What are the key barriers to delivering high-quality early years services, particularly in Family Hubs and through neonatal and paediatric services, and how can they be addressed?  

Action Cerebral Palsy evidence:  In order to provide high-quality services for very young children with cerebral palsy, those babies or young children at risk must be identified and promptly assessed and then receive the therapy and care that is most appropriate to their needs.  But this work force lacks training in the key warning signs or the need for urgent referral and assessment for those at risk, and is so diminished that paediatric services are unable to provide the care these young children require.  The key barriers to delivering high-quality early years services for young children with cerebral palsy are:

      Postcode lottery of provision

      Lack of workforce skills and training in the area of early motor development – improving the understanding of the early warning signs of cerebral palsy and the importance of rapid onward referral for assessment will greatly help improve the lifelong chances for these at risk babies. 

      A paediatric healthcare workforce that is greatly diminished and that has been deprioritised means that children with cerebral palsy are missing out on opportunities for early detection, and then subject to long delays in their route to assessment, and then losing out on vital intervention services that can have a substantial and lifelong impact for these exceptional children.

6. How can the Government most effectively tackle inequalities in access and infant health outcomes for those from underserved groups including those with disabilities, or from ethnic minority or deprived backgrounds?

Action Cerebral Palsy evidence:  To help tackle the inequalities experienced by very young children with CP, the following recommendations from the APPG on CP are of direct relevance:

      Non-specialist health professionals, such as: GPs, community paediatricians, health visitors and social workers must receive specific training on the early signs of cerebral palsy and associated neurodisabilities in infants.

      There should be three additional universal health visiting contacts, to increase the opportunity for early detection of children with cerebral palsy. These should take place at: 3-5 weeks, 3 months, and 3.5 years. Increased health visitor screening of all infants at three months old will help to identify infants with emerging signs of cerebral palsy and refer them to specialised care pathways.

      The Government must urgently invest in the health visiting workforce, to increase its size and capacity and offer specialised training in the early signs of movement difficulties in infants, ensuring that health visitors have the tools to identify signs of cerebral palsy as early as possible.

7. What could the Government learn from examples of best practice that exist in local authorities, NHS Trusts, or internationally?  

Action Cerebral Palsy evidence:  Empowering Healthcare professionals to respond and refer rather than wait and see ensures at risk children are referred promptly, assessed and receive care and intervention at the earliest possible moment, and at a point when it can have a positive impact on that child’s lifelong prospects as well as their and their family’s well-being.

NHS England Children and Young People’s Board Task Force on Cerebral Palsy has developed a promising framework for the commissioning of care and services for CYP with CP for Integrated Care Systems which will be underpinned by improved, albeit still limited, data collection.   This initiative could provide a blueprint for mandatory pathways of care for all children with neuro-developmental conditions and therefore requires support and ongoing funding for the ICS to fully implement in all areas.

A national CP register would provide information on the incidence, diagnosis, medical history, developmental needs and outcomes of children with CP across the country. Good data collection, like schemes in Northern Ireland and Australia, help to facilitate improved outcomes for these children and young people by enabling a better understanding of the need in service commissioning and planning.  The introduction of an Australian Cerebral Palsy Register has been integral to better and earlier provision, making it infinitely easier to map the number of children and young people diagnosed, what symptoms they have, and what their health outcomes are. The introduction of the Australian CP Register has enabled improvements including the monitoring of progress of children with, or at risk of, cerebral palsy and extra resources being allocated to research the causes and prevention of the condition. This, in turn, has led to the implementation of best practice which has resulted in the rate of cerebral palsy amongst new-born children starting to fall, as evidenced in the Report of the Australian Cerebral Palsy Register 2018[xii]. In the United Kingdom, Northern Ireland has an established Cerebral Palsy Register, administered by Queen’s University Belfast and there is an emerging register in Powys, Wales. The Cerebral Palsy Integrated Pathway (CPIP), run by paediatric physiotherapists, collects information about orthopaedic procedures. However, across the UK, and in England in particular, knowledge is still so patchy and variable that it is currently extremely difficult for ICSs to track the number of children and young people with the condition and therefore to provide the relevant resources.