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.

Action Cerebral Palsy launches Five Year Strategy

Reception at the House of Commons

Action Cerebral Palsy launches Five Year Strategy at the House of Commons

On Monday evening, 21st March 2022 at the House of Commons, Mary Kelly Foy MP, Co-Chair of the All-Party Parliamentary Group on Cerebral Palsy welcomed fellow politicians and policy makers, specialist educators and therapists, leading clinicians and healthcare professionals, local government representatives, leading funders and philanthropists and parents of children with cerebral palsy and young adults with the condition to the launch of Action Cerebral Palsy’s Five-Year Strategy. She called on supporters to join together with Action Cerebral Palsy in working to improve the outcomes for all children in the UK with cerebral palsy.

Action Cerebral Palsy, which is the only charity that actively campaigns on behalf of the estimated 30,000 children with cerebral palsy in the UK, launched its Strategy and Impact Report, in which the charity sets out its aims to work collaboratively across the public, private and third sectors to improve awareness and understanding of cerebral palsy, to improve access to the best possible care and support for children with cerebral palsy and their families across the UK, and to ensure that families who are on this journey have better information, support and advocacy.

“In spite of the fact that cerebral palsy is the most common physical disability in childhood, the experience of many families with children with cerebral palsy is of being inadequately supported and informed at the critical and devastating point of diagnosis and of having to fight throughout their child’s growing years for the level of service and care their child needs to thrive,” said Amanda Richardson MBE, Founder and CEO of Action Cerebral Palsy.

This experience was highlighted during the evening so poignantly by Dr Helen Hunt, parent to 7-year-old Wilfred who has cerebral palsy; “The system should be working for you, should be supporting you, should be looking to see how they can make things better for your child, and it hasn’t worked like that. I feel like I am constantly in battle mode ready to put Wilf’s case forward in order for his needs to be met.”

Action Cerebral Palsy is spearheading a number of initiatives to improve education and healthcare support for children living with cerebral palsy in the UK and their families:

  • A public awareness campaign about the early warning signs of cerebral palsy – If in Doubt, Check It Out
  • CP Covenant – whereby Action Cerebral Palsy calls on councils throughout England to recognise that the complex and varied needs of the cerebral palsy community require better understanding and closer working across several widely differing areas. It is important for someone to hold responsibility at a local level, and Action Cerebral Palsy believe that the convening power of local government is the best way to address this.
  • The continuation of support for the All-Party Parliamentary Group on Cerebral Palsy with further sessions in 2022 focusing on transition into adult services and social inclusion for children with cerebral palsy.

As Mary Foy, MP, the evening’s host said; “The challenges and inequalities of provision faced by children with cerebral palsy and their families are finally being given attention by politicians thanks to the work of Action Cerebral Palsy. I am delighted to be able to support their drive for reform as part of my role as Co-Chair of the APPG on Cerebral Palsy.”

Paul Maynard, MP and Co-Chair of the All-Party Parliamentary Group on Cerebral Palsy added;
“There is so much policy work that needs doing; focus and detailed advising of government to make sure that the obstacles that are in the way of both children in the education system, adults in the workplace, and for those families trying to support those children throughout their lives are overcome as rapidly as possible. We are making progress. I think that with the existence of Action Cerebral Palsy, a new spotlight has been shined upon this overlooked condition. I look forward to working with Action CP in the years to come.” 

Thanks to the work of Action Cerebral Palsy and the wider cerebral palsy community of healthcare professionals, clinicians, therapists, special needs educational institutions, local authorities, third sector organisations and funders, progress is being made. Dr Charlie Fairhurst, Consultant in Paediatric Neurology at the Evelina Children’s Hospital in London highlighted; “Now is the perfect time for action to develop services across all regions of the NHS. We need to work together to ensure that all children, wherever they live, have equitable access to the services they need and deserve.”

Amanda Richardson concluded with an appeal for support; “Over the years, we have heard from so many parents like Helen, who feel that their child has been forgotten and left behind. With your help, we can make a difference for Helen’s son and so many children like him with cerebral palsy and ensure that they have access to the right care at the right time and a brighter future.” 

Click here for Action Cerebral Palsy’s Strategy and Impact Report

Action Cerebral Palsy is very grateful to Enable Law for their sponsorship and help with the launch event.

Enable Law logo

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.

March is Cerebral Palsy Awareness Month

Graphic of Action Cerebral Palsy target logo

Action Cerebral Palsy spearheading a number of new public and policy initiatives

  • If in Doubt, Check it Out – We are going to be launching a public awareness campaign about the warning signs of cerebral palsy in very young children as too many babies and young children are missing out on the early referral and treatment they critically need because of the lack of knowledge of these early presenting features amongst the public and some primary healthcare professionals. We will provide you with information that you can share with your constituents.
  • A number of authorities have already expressed an interest in our Cerebral Palsy Covenant which is intended to tackle the postcode lottery of provision and ensure children with cerebral palsy across the country get the same level of care.  We have written to the leaders of every local council in England to take up this call to recognise that the complex and varied needs of the cerebral palsy community require close working across several widely differing areas. #CerebralPalsyCovenant
  • Finally, Action Cerebral Palsy is proud to be co-sponsoring the forthcoming sessions of the APPG on Cerebral Palsy which will be focusing on transitioning to adult services and accessing social and recreational activities. The APPG secretariat will be publishing a call for evidence soon and we ask you to share this within your constituency to encourage young adults with cerebral palsy, their families, local charities, social services providers, schools, colleges and businesses to provide evidence about their experiences, both good and bad, so that the evidence to the APPG captures experiences from across the UK.

Action CP was pleased to welcome policy makers, local government representatives, leading clinicians and healthcare professionals, SEN educators, funders and parents of children with cerebral palsy and young adults with cerebral palsy to an evening reception at the House of Commons on Monday, 21st March 2022 to launch its 5 Year Strategy & Impact Report

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. 

Action Cerebral Palsy Parent Survey

Graphic reading 'Your Opinion Matters'

Action Cerebral Palsy Parent Survey – Giving parents of children with cerebral palsy a voice

Action Cerebral Palsy has recently undertaken a national parent survey to gather feedback about parents’ experience of the services and care (statutory, non-maintained and voluntary sector) they have accessed for their children and young people with cerebral palsy. The topics covered in this online survey include: diagnosis, early therapeutic intervention, the Education Health and Care Plan (EHCP) process and school provision, and this serves as a follow up survey to one we conducted in 2014 for the Parliamentary Inquiry and will help to measure change, if any, in families’ experiences since that original survey.  The input from parents has also been the backbone of the evidence that we provided to the current series of All-Party Parliamentary Group sessions on Cerebral Palsy. We are incredibly grateful to all of the parents who took the time to contribute to this dialogue and to the many organisations, schools, charities, and professionals who helped to share about this survey with their networks.

Progress for families with children with cerebral palsy since the initial Parliamentary Inquiry in 2014 has been too slow.  There are still significant anomalies and inadequacies of current educational, health and care systems of provision experienced by many families with children with cerebral palsy. In spite of the introduction in 2017 of the NICE guidelines for the diagnosing, assessing and managing of cerebral palsy in children and young people from birth up to their 25th birthday, and the update to the SEND Code of Practice in 2015, very little has changed for parents of children with cerebral palsy since our original survey in 2014. Parents continue to tell us that the provision their child is receiving is fractured, incohesive, and does not always follow the statutory timelines or duty of care. Parents are left feeling marginalised and frustrated by a system that does not understand or have sufficient training in their child’s disability, where services are not joined up or consistent, and one in which their child’s needs are secondary to local authority budgets. 

Key findings of the parent survey include:

60% of parents were not given any information about cerebral palsy at the point of diagnosis for their child. Moreover, 54% of parents said that they did not feel that the diagnosis process worked as it should have.

56% of parents who responded to Action Cerebral Palsy’s survey felt that education and therapy services did not work together to support their child. Parents are calling for greater flexibility in commissioning and accessing services for their child; In the words of one parent, they need “easier and quicker access to funding support together with joined-up thinking and less complexity around the myriad of funding pots across the local authority and NHS providers which are illogical and impossible to understand and act as barriers to accessing funding and support.” We asked this same question on our 2014 parent survey, and on that survey, parents were split 50/50 Yes/No in terms of whether they felt that education and health services were working together to support their child. So, for parents, the system has not improved and in fact, they perceive that the provision has gotten worse over the past 7 years.

We asked parents what they felt had/has been the biggest obstacles to getting the appropriate education and therapy support for their child, and here is what they said (and parents were able to choose more than one option):

  • NHS funding and capacity to deliver frequent, regular intervention – 57%
  • Local education authority funding and financial needs are prioritised over my child’s needs – 53%
  • Local education authority provision which is too limited or not specific to my child’s needs – 35%
  • No independent advocate who is there to help – 32%
  • School lack of training, appropriate equipment and resources for my child to fully participate – 27%
  • Lack of understanding or training amongst LA and NHS professionals – 27%
  • I am satisfied with the education and therapy support my child receives – 10%
  • Other – 7%
  • FYI, we asked the same question but with fewer options in 2014 (and parents could only choose one rather than more than one answer) and here’s the response:
    • Local education authority – 38% felt this was the biggest obstacle to getting appropriate education and therapy support for their child
    • Health Services – 32% felt this was the biggest obstacle
    • School – 15%
    • Other – 15%

59% of parents said that they found the Education Health and Care Plan process to be bad (or very poor). In fact, only 15% of parents said that they felt the process had been “good” or “outstanding.” 

We asked parents if their child was attending (or had attended) a voluntary sector (e.g. not an NHS service) specialist early intervention centre for children with cerebral palsy such as a Conductive Education or Bobath centre, and 77% of our parents responded that their child had/was attending such a service. We then asked whether their child was able to access a similar specialist service or club for children with cerebral palsy once their child started full time school, and only 18% of parents said that their child was able to do so. 

Action Cerebral Palsy is urging the Government to implement the recommendations from the All-Party Parliamentary Group on Cerebral Palsy and to make a difference for the better to the lives of tens of thousands of families in the UK.

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.