Cerebral Palsy Foundation launches plan to revolutionise CP care in Ireland
Posted on: 22 May 2023
An estimated 3,000 children and young people and 9,500 adults are living with CP in Ireland. Backed by $12.5 million in philanthropic funding, this five-year programme will change the trajectory of their lives.
The Cerebral Palsy Foundation (CPF) has announced the launch of a Programme of Excellence to revolutionise the delivery of cerebral palsy care in Ireland. Through the development of three major clinical and research hubs at Trinity, University College Cork, and RCSI University of Medicine and Health Sciences, this first-of-its-kind initiative will establish Ireland as an international leader in cerebral palsy care and research. Children’s Health Ireland (CHI) is an implementation partner in the academic healthcare programme.
Cerebral Palsy is the most common childhood-acquired lifelong physical disability. Many individuals with CP face significant and unnecessary challenges in their daily lives, including problems with movement, speech, and other body systems.
An estimated 150 babies receive a CP diagnosis in Ireland each year, and an estimated 3,000 children and young people and 9,500 adults are living with CP in Ireland. Early intervention and the right care pathways can make a significant difference in the long-term outcomes and quality of life for people living with CP.
Backed by $12.5 million in philanthropic funding pledged from a group of donors including John and Patrick Collison, this five-year programme will change the trajectory of people’s lives affected by CP in Ireland.
The Programme of Excellence will advance CP care and research across four major pillars:
Clinical Implementation: implementing the best evidence into clinical practice in healthcare settings.
Research: conducting high-quality research programmes and developing an international network of researchers committed to implementation, dissemination, and knowledge transfer.
Dissemination and Education: promoting community education and providing professional education and career pipelines to encourage and develop new clinicians and researchers in the fields of CP clinical care and research.
Advocacy and Policy: identifying and developing stakeholder groups, supporting individuals with CP and their families to drive improved care.
The programme will build on significant strides already made by the CP research community and leading clinicians from around the world. An Expert Steering Committee of cerebral palsy and non-cerebral palsy experts from clinical care, academia, industry, and the CP community will guide the implementation ensuring a multi-disciplinary and multi-stakeholder approach.
Four priority areas of clinical implementation and research have been identified as priority for the initial phase of the programme:
- Early Detection & Intervention (0-2yrs) led by UCC
- Musculoskeletal and Orthopaedic Care (children and young people) led by Trinity
- Community-Based Motor Management Services (children, young people, and adults) led by UCC, TCD & RCSI
- Adult services and support led by RCSI
These priority areas will be piloted in regions across Ireland. Once systems have been developed and proven they will be used as models to expand care across the country. The Programme will utilise already established networks including In4Kids, a Health Research Board national paediatric clinical trial network. CPF is committed to expanding this programme through further research funding and philanthropic support. Institutional support from Trinity, UCC, and RCSI guarantees its continuation beyond the initial five-year period.
"Our vision is to make Ireland a world leader in the delivery of Cerebral Palsy care," said Rachel Byrne, Executive Director of the Cerebral Palsy Foundation. “We want to create a sustainable continued care model for infants through to adults with CP in Ireland led by expert clinicians and researchers. We will leverage our extensive network and international expertise on best practice to help drive the programme through collaboration. We welcome all partners, including the CP Community, academia, industry, and government to join us on this journey."
Lily Collison, whose son Tommy has CP, is a Cerebral Palsy Foundation board member and a long-time advocate for CP care in Ireland. "Cerebral Palsy is the most prevalent childhood acquired physical disability," she said. "Due to outdated systems and inappropriate interventions, lives are often significantly and unnecessarily compromised. This has long-term social as well as economic implications." Collison went on to explain that the CP Programme aims to become a world-leader in CP care within five years. "It's a challenging but achievable goal if we all work hard and smartly together." she said.
Eilísh Hardiman, Chief Executive of Children’s Health Ireland welcomed this Programme: “Children’s Health Ireland is committed to improving clinical outcomes for infants, children, and young people with Cerebral Palsy. As a partner in paediatric academic health sciences, CHI welcomes collaboration with Trinity and UCC to use this philanthropic funding pledge by the CP Foundation to truly make a difference to healthcare, education, research, and innovation in CP care in Ireland.”
Professor Geraldine Boylan, Director of the INFANT Research Centre at University College Cork, expressed excitement for the programme’s potential impact. “We are thrilled to be part of this programme in Ireland and to work with the Cerebral Palsy Foundation, healthcare & research community, and families to make a significant and positive difference in the lives of people with cerebral palsy. Early intervention is critical for people with CP. The earlier we can diagnose and intervene, the better the outcomes for the child and the family.”
Professor Colin Doherty, Head of School of Medicine at Trinity College Dublin said: "This programme provides a rare and unique opportunity for Ireland to become a world leader in cerebral palsy care and treatment. Trinity is working alongside other partners to make real discovery in the development of new diagnostic techniques, new therapies and new pathways of integrated care between the hospital and the community and between childhood, adolescence and adulthood for people with cerebral palsy.”
Professor Cathal Kelly, Vice-Chancellor, RCSI University of Medicine and Health Sciences said: “We are really pleased to be a partner in this important initiative which will have a positive impact on the lives of people with cerebral palsy. As a university wholly focused on health, RCSI is deeply committed to educating the next generation of health care professionals and to research which drives improvements in patient outcomes and quality of life. The RCSI team will now build on the School of Physiotherapy’s track record of leading research and education on cerebral palsy, with a particular focus on adulthood, as part of this new collaboration.”
Professor Eleanor Molloy, Professor of Paediatrics & Child Health, Trinity Institute of Neurosciences (TCIN) said “every individual with cerebral palsy is different so it's very important that we can personalise care plans for each person. Huge work is being done across all aspects of research and patient care and this is being translated into tailored patient pathways and interventions throughout life.”
The Programme will also support the development of a Cerebral Palsy Register in Ireland, enabling the collection of important data to inform research and improve care.