Action Cerebral Palsy launches public awareness campaign

Poster for 'If in doubt, check it out' campaign

Action Cerebral Palsy launches a public awareness campaign to help more young children get the care and support they need more quickly.

Cerebral Palsy is the most common cause of lifelong disability starting in infancy. Despite this, there are often unnecessary delays in the early identification and referral of infants, which, in turn, prevents effective early intervention treatments taking place at the time when they can be the most impactful. A key reason for this is a lack of awareness of the early signs of cerebral palsy amongst the general public and some primary healthcare professionals.

Approximately 1,800 children a year will receive a diagnosis of cerebral palsy, which is roughly 1 in 400 children. Of these children, we know that approximately 50% will have been “high-risk” babies discharged from special care baby units and will therefore have been monitored by follow up services and unfortunately go on to be diagnosed with cerebral palsy. However, the remaining 50% who were not known or believed to be at risk of having cerebral palsy from birth often go undetected because parents and first line health practitioners are unaware of the signs of cerebral palsy. The impact of COVID-19 on our community of children and young people with or at risk of cerebral palsy has only exacerbated this problem of delayed intervention and will have lasting implications for many of these children’s long-term prospects. COVID restrictions have meant that many GPs and Health Visitors are not seeing babies face to face, which affects the professionals’ ability to instantly detect an abnormality, and coupled with new parents not having access to their wider support network, means that even more babies who are displaying the warning signs of cerebral palsy are going undetected at a point when early intervention can have a positive impact on that child’s future outcomes.

There is now a substantial body of evidence showing that identification and intervention at the earliest opportunity provides the infant at risk of cerebral palsy with the best possible outcomes in terms of future progress and independence. By raising awareness in those key early signposters that highlights signs to be concerned as well as the critical importance of early intervention and ongoing intensive intervention, this could have a significant and highly beneficial impact on the life chances of young children with or at risk of cerebral palsy

The Awareness Campaign strapline: If In Doubt, Check it Out will help parents to understand key milestones for motor development at each age and stage from birth to 3 years old, as well as encouraging them to speak with their GP or Health Visitor if they have any concerns. The aim is to ensure that children with movement delay or disorders to not ‘slip through the net’ as a result of ignorance of the signs or a ‘wait and see’ attitude. Posters featuring this key message and Parent Information Leaflets have been sent to GP surgeries and shared via a social media campaign.

Poster for 'If in doubt, check it out' campaign
Action Cerebral Palsy Awareness Campaign Poster

The poster and parent information leaflet for this campaign have been accredited by the Institute of Health Visiting, and the campaign has been funded by Action Cerebral Palsy and a number of trusts and foundations, including the Barbara Ward Children’s Foundation, the Brian Murtagh Charitable Trust, the Childwick Trust and the Souter Charitable Trust.

In the words of Dr Helen Hunt, a medical doctor and mother of Wilf who has four limb cerebral palsy,

“Wilf was diagnosed with cerebral palsy at 16 months. It is only with hindsight that I am able to look back on that day and articulate what felt so wrong with the delivery of his diagnosis. To make it worse, I was then told both his physiotherapist and paediatrician had suspected Wilf had cerebral palsy for some time. Why on Earth did they not tell me sooner? I’m a proactive parent, and had I known that the “golden years” for making the greatest difference to my child’s outcomes were the first three years, I would have got researching as fast as I possibly could to find more effective services.”

More about Action Cerebral Palsy: Action Cerebral Palsy began in 2013 as a consortium of specialist charities working with children with cerebral palsy and their families and became a registered national charity in 2016. Our staff and trustees have first-hand experience working and living with cerebral palsy. Action Cerebral Palsy’s objective is to ensure that all children with cerebral palsy wherever they live in the UK have the best possible start to life and ongoing help and support. 

First Ever All-Party Parliamentary Group on Cerebral Palsy

Speakers at a press conference

All Party Parliamentary Group on Cerebral Palsy

Action Cerebral Palsy is very proud to have been the inaugural sponsor of the first ever All-Party Parliamentary Group (APPG) on Cerebral Palsy. The APPG, which is chaired by Mary Foy MP and Paul Maynard MP, was set up to be a forum for Parliamentarians to better understand the challenges faced by individuals of all ages with cerebral palsy and their families.

The first two sessions in late 2020 and 2021 focused on Early Identification, Intervention and Pathways of Care and the third and fourth sessions looked at Education, Health and Care Plans and Teaching and Learning for children with cerebral palsy. This was followed by sessions in late 2021 about the barriers for adults with cerebral palsy accessing and receiving healthcare, as well as barriers to entering, staying in, and progressing in work, as well as lessons from the impact of COVID-19. In 2022, the APPG has been examining the transition from childhood to adulthood.

1. APPG on Cerebral Palsy Report, March 2021

Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment

Parents, clinicians and voluntary sector experts provided compelling evidence about the vital importance of early identification and intervention for infants with or at risk of cerebral palsy and also about the current gaps in joined up care pathways experience by many families. These 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. Specific recommendations for reform include:

  • The Government should work in partnership with NHS England and devolved health bodies to develop a high-quality, standardised national surveillance programme for preterm babies and infants who are at high-risk of diagnosis of cerebral palsy. This should incorporate assessment items and investigations that are known to be highly predictive of neurodevelopmental outcomes, such as MRI brain scans, Prechtl’s General Movements Assessments, and neurological examination.
  • The Government must fund and ringfence streamlined pathways of care for children at risk of neurodisability. This should lead to the establishment of properly mapped out, costed, and funded national care pathways, between primary care and secondary and tertiary multidisciplinary centres of excellence, which should put the needs of children and their families at the heart of all decision making.
  • All health authorities should be required to implement the NICE Guidelines and Quality Standards as a minimum standard, and practitioners and clinicians at a local level must be fully aware of their responsibility for prompt referral to expert multi-disciplinary teams. All care pathways should include agreed and audited quality standards.

2. APPG on Cerebral Palsy Report, October 2021

Best practice in Education, Health and Care Plans (EHCPs), Teaching, and Learning for Children with Cerebral Palsy

Drawing on the testimony of experts, parents and those with lived experience of cerebral palsy, the APPG’s report finds that there are gaps in the existing EHCP process and service provision that are letting children with cerebral palsy and their families down.

To remedy this, and to end the postcode lottery of access to support, the APPG makes a series of recommendations that will revitalise the current support system and remove the barriers that children and young people with cerebral palsy and their families encounter. Specific recommendations include:

  • The Government should appoint a national Cerebral Palsy Action Champion to join the dots between its policies on addressing cerebral palsy as a lifelong condition across different departments. This Champion, akin to the role of the Youth Mental Health Ambassador, would oversee the joint working recommended by the Education Committee’s SEND Report, ensuring any outcome framework is implemented effectively and work across Whitehall and the UK for a joined-up approach.
  • The creation of a single national template and process for EHCPs to be produced by experts in cerebral palsy, with increased routes for input from families and relevant professionals.
  • As a right, every family with a child with cerebral palsy will be offered control of a personal care budget for services, equipment.

Following the publication of these reports, Action Cerebral Palsy has been involved in talks with the Department of Health and Social Care, NHS England and other agencies with the aim of implementing the recommendations contained in the reports which, when put into practice, will greatly enhance the quality of health and educational provision available to children with cerebral palsy across the UK.

3. APPG on Cerebral Palsy Report, March 2022

Barriers for Adults with Cerebral Palsy on Achieving Full Life Participation: Access to Healthcare Services and Progressing at Work

Parliamentarians composed the report based on dozens of submissions from clinicians, academic experts, leading charities, campaigning organisations and, crucially, members of the adult Cerebral Palsy community from all parts of the UK providing testimonials as to their lived experience. In addition to recommendations for policymakers, the report highlights many of these moving stories to support its proposals.

Among the recommendations, Parliamentarians call on NHS England, social care, education, and employment specialists to agree a new national specification for adult Cerebral Palsy to commission dedicated specialist services across the new 42 Integrated Care Systems (ICSs) in England. Devolved governments should put in similar measures in their respective health systems.

Other proposals contained in report include:

  • Guaranteeing adults living with Cerebral Palsy annual medical reviews to better assess their evolving health and care needs.
  • Ringfencing funding for the ICSs to develop specialist services.
  • Enhancing employment rights for adults with Cerebral Palsy to better reflect the varied, fluctuating, and complex nature of their conditions.
  • Creating a new online information hub for employers to better understand the needs of member of the adult Cerebral Palsy community in their workforces.

4. APPG on Cerebral Palsy Report, October 2022

Growing Up: The Transition from Childhood to Adulthood

This is the fourth report from the All-Party Parliamentary Group on Cerebral Palsy, and it focuses on the difficulties that young adults with cerebral palsy face as they attempt to make the transition into adulthood. As part of World Cerebral Palsy Awareness Day, this was released as part of the Group’s continuing research into cerebral palsy.

Dozens of pieces of written evidence were reviewed, revealing eye-opening stories, statistics, and other data that make a compelling argument for reform. To see this report presented as a 10-point plan for Government, please click here.

Action Cerebral Palsy will continue to campaign vigorously for these vital improvements on behalf of the cerebral palsy community.

Action Cerebral Palsy continues to support the work of the APPG and is very grateful to all the Parliamentarians and stakeholders who have taken part in the sessions so far.

More about Action Cerebral Palsy: Action Cerebral Palsy began in 2013 as a consortium of specialist charities working with children with cerebral palsy and their families and became a registered national charity in 2016. Our staff and trustees have first-hand experience working and living with cerebral palsy. Action Cerebral Palsy’s objective is to ensure that all children with cerebral palsy wherever they live in the UK have the best possible start to life and ongoing help and support.