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Making a Difference in Ireland

REVOLUTIONISING CP CARE in Ireland

The Irish Cerebral Palsy Programme of Excellence was launched in May 2023 with the goal of transforming the lives of Irish people living with cerebral palsy. This five-year initiative aims to establish Ireland as an international leader in cerebral palsy care.

Our work in Ireland focuses on four key strategic area: improved clinical implementation, increased research, improved education & information dissemination, policy & advocacy that centers on cerebral palsy. The Cerebral Palsy Foundation is collaborating directly with government bodies and agencies, NGO’s, clinicians, therapists, and key stakeholders, including Irish families and adults affected by cerebral palsy.

CP Care in Ireland

The programme supports all age groups across the lifespan, with focus on three areas: infants (0-2 years), children and adolescents (3-17 years), and adults (18+).

Cerebral palsy (CP), the most common cause of lifelong physical disability, affects 12,500 people in Ireland. Each year approximately 150 babies in Ireland are diagnosed with CP. Currently an estimated 3,000 children and young people, and 9,500 adults current live with the condition. Research indicates up to 90 percent of individuals with CP in Ireland receive inadequate or no services, leading to poor outcomes. Currently late diagnosis delays early intervention, missing crucial early periods when the brain’s ability to adapt (neuroplasticity) is greatest. People with CP often need therapies, orthopedic surgery, specialized equipment, and more. Due to limited treatment options in Ireland, many families travel abroad for treatment. The programme aims to revolutionize cerebral palsy care in Ireland to ensure families receive the care they need at home.

Care Across the Lifespan

  • Infants

  • Children & Adolescents

  • Adults

Infants

Our vision challenges current thinking of what is possible, early detection and intervention is for infants and toddlers up to 2 years old.

Overarching Goals:

  1. Establish a chair position at UCC focused on early brain injury and CP.
  2. Implement international best practices for early detection of high-risk infants and reduce the average age of diagnosis to below 12 months.
  3. Establish a national screening program for all infants in hospital and community.
  4. Set up a national CP register and an intervention pathway for evidence-based CP treatments.
  5. Develop new tools and AI technologies for early detection of CP-related functions and risk factors.
  6. Form a families advisory group with CP stakeholders.
  7. Create a comprehensive CP education and training strategy for clinicians in Ireland.

Children & Adolescents

Our vision is to ensure that every Irish child has access to world-class, evidence-based care in Ireland, including necessary orthopedic surgeries and rehabilitation. The right surgeries at the right time will greatly improve their quality of life and outcomes.

Overarching Goals:

  1. Establish a permanent Chair of Cerebral Palsy at Trinity College.
  2. Develop and implement national Clinical Practice Guideline (CPG) based on international evidence-based best practice for children and adolescents with CP.
  3. Establish a national CP clinical programme within the HSE, adding acute rehabilitation services.
  4. Ensure over 90% of children and adolescents with CP receive timely access to therapies, specialist services and equipment.
  5. Include more than 90% of children and adolescents with CP in a hip surveillance program to reduce hip dislocation rates.
  6. Achieve international evidence-based best-practice orthopaedic surgery. Ensuring 90% of children and adolescents get the right surgery at the right time. This includes hip surgery, gait improvement surgery (single-event multilevel surgery), spine surgery and upper-limb surgery.

Adults

Our vision is for Ireland to lead in developing and using the global Clinical Practice Guideline for the care of adults with CP across the country. This will improve the quality of life for all Irish adults with CP.

Overarching Goals:

  1. Establish a permanent CP research hub at RCSI focused on lifespan and adults care.
  2. Lead the development and implementation of the international Clinical Practice Guideline (CPG) for care of adults with CP across GP and specialist care in Ireland.
  3. Ensure more than 75% of adults with CP will have access to this care.
  4. Develop and lead a national register for individuals with CP across all age groups.

Helpful resources ireland

Join our Ireland Community Facebook Group

Join the Ireland cerebral palsy community on Facebook!

 

You can also email us directly about this project at nicola.welford@yourcpf.org

Join Now!

In4Kids

In4kids is the Irish hub in the c4c network.

c4c (conect4children) is a large collaborative European network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population.

Find out more about c4c here.

Learn More

CP-Life Center RCSI

A research centre dedicated to generating evidence that improves services and supports for people with cerebral palsy throughout life.

Learn More!

Who Are Our Partners?

Three major research and clinical hubs, located at University College Cork (UCC), Trinity College Dublin (TCD), and the Royal College of Surgeons Ireland (RCSI) have been established. Children’s Health Ireland (CHI) are implementation partners in our work to establish Ireland as a global leader in CP care and research. International networks and alliances are being formed with institutions such as Emory University and UCLA in the United States, with additional partnerships in development in Australia and Europe. Our early detection and intervention network includes all four tertiary maternity hospitals in Ireland, led by UCC in collaboration with the INFANT Center, In4Kids network, and Cork University Maternity Hospital, The Coombe Hospital, The Rotunda Hospital, and The National Maternity Hospital (Holles St) make up our core network. Waterford Maternity Hospital and CHI – Crumlin and Temple St will join the network in the second quarter of 2024.

News

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Now we’re in a position where we know that there are therapies out there. There are studies being conducted at the moment with special emphasis on cerebral palsy and therapies that will help children with cerebral palsy. So while this study has helped our child use his right arm in a more functional manner, it has also helped our family. My husband and I realize that we’re not alone, that there are therapies out there, that other families are in similar positions, and that there are organizations like the Cerebral Palsy Foundation focused on helping children with cerebral palsy.

Parent of a child with CP in Ireland