Advocacy

As a parent organisation representing children with cancer we are well placed to give valuable advice and feedback from both a child’s and parent’s perspective. We are aware of the many problems experienced by children with cancer and the multiple challenges that they and their families face, both during and after treatment. 

 

Childhood Cancer Foundation advocates for:

- Better supports and services for children with cancer and their families

- Increased investment in research

- The development of child specific cancer drugs

- Better treatments and outcomes for all children with cancer 

 

If you would like to  speak to us about any issues you would like addressed please contact: maryclaire.rennick@childhoodcancer.ie. We would love to hear from you. 

 

We are a member of:                                                              

- Childhood Cancer International

- Childhood Cancer International Europe

- Unite2Cure

- The National Cancer Control Programme (NCCP) Development of Children, Adolescent and Young Adult (CAYA) Cancer Programme-  @hseNCCP

- Cancer Patient Advisory Committee-National Cancer Strategy 2017-2026 

- The CanCare4living  Advisory Group which aims to establish high quality, long term follow up care facilities for survivors of childhood  cancer

- Children in Hospital Ireland– Network for Childhood Illness Groups set up to address the common issues around having a child with a serious illness who requires regular hospitalisation

 

NCCP Children, Adolescents and Young Adults (CAYA) Clinical Leads Board

Childhood Cancer Foundation is honoured to be a member of the National Cancer Control Programme (NCCP) Children, Adolescents and Young Adults (CAYA) Clinical Leads Board. Over the next 8 years the NCCP will be responsible for implementing the recommendations of the National Cancer Strategy with regard to CAYA. We are also a member of the Survivorship and Shared Care Boards.

We want to see improvements to the existing childhood cancer services, eg. more consultant and nursing appointments and resourcing, improvements to hospital access and facilities and psychological supports for children with cancer, their siblings and parents, both in hospital settings and in the community. We are the voice of children with cancer and their parents at the NCCP.  

 

Children in Hospital Ireland

We are proud to be a member of the newly formed Children in Hospital Ireland (CHI) Network for Childhood Illness Group.

CHI has established a network of childhood illness groups in order to promote relevant collaborations, share information and expertise and create a combined voice for advocating for enhanced services for children and young people with experience of hospital, and their families.

The network is funded until the end of 2019 by the Department of Children and Youth Affairs under the What Works Network Support Fund.

The purpose of the network is to ​maximise combined knowledge and evidence that can promote better services and identify strategies to:​

- Identify common issues and potential supports to children and young people in hospital​

- Promote professional learning and collaboration amongst the entire network and between individual organisations 

- Respond to shared issues​ identified by the different groups using a shared approach

- Provide a united and accessible voice for the network members and a central contact point for policy makers​

The other members of the network are: AsIAm, Cystic Fibrosis Ireland, Debra Ireland, ACT for Meningitis, Heart Children Ireland, Children's Liver Disease Ireland, Spina Bifida and Hydrocephalus Ireland.

Childhood Cancer Foundation is also supporting and participating in the CHI research on ‘The Cost of Having a Child in Hospital’.

 

Childhood Cancer Foundation involved with NCPE approval process for new paediatric cancer drug

Childhood Cancer Foundation is delighted to see that “Dinutuximab Beta”, an innovative immunotherapy drug for the treatment of High Risk Neuroblastoma, has been approved for reimbursement in Ireland. To date, this has only been available as part of clinical trials. This ground breaking drug will now become part of the frontline “standard of care” for Irish children with High Risk Neuroblastoma.  This puts Irish children on a par with children receiving the most up to date front line treatments available across the world.

Childhood Cancer Foundation played a small role in this success. Working hand in hand with the Oncologists from St. John’s Ward in Our Lady's Children's Hospital Crumlin, we participated in the formal NCPE application process. The role of Childhood Cancer Foundation in this application was to provide the Patient Organisation Submission of Evidence. This was included in full in the final report to the HSE and helped to ensure a complete picture of the impact of this High Risk Neuroblastoma and the benefits of access to best in class medicines was presented to the decision makers. This is directly linked to one of our strategic goals which is to provide children in Ireland access to innovative medicines.

We must remember that none of this would be possible without the participation of Irish children in well controlled, internationally cooperative clinical trials - this is their win!

High Risk Neuroblastoma affects approximately 6 children a year in Ireland and generally affects children under 5. It is a cancer of the sympathetic nervous system and leads to cancer of the bone, bone marrow, blood, soft tissue and potentially the central nervous system.

The treatment regimen is recognised as one of the harshest used in the field of children’s cancer. It involves chemotherapy, surgery, stem cell transplant, radiotherapy and immunotherapy. Despite this, it has a significant rate of relapse with post relapse survival rates of less than 20%. Inclusion of this product in the treatment regimen has been shown to improve the rates of survival of children with High Risk Neuroblastoma.

 

National Cancer Strategy 2017-2026 

Childhood Cancer Foundation together with CanTeen Ireland were proud to advocate for children in the National Cancer Strategy 2017-2026 which was launched by the Minister for Health, Simon Harris TD. For the first time, children and adolescents with cancer are included in the National Cancer Strategy. We are working with the HSE, NCCP and other organisations to help improve services, supports and facilities for children with cancer, their families and caregivers.

Our Lady's Children’s Hospital Crumlin will become a designated cancer centre, which will ensure the continued delivery of a high standard of care for children and adolescents fighting cancer. An age appropriate facility will be designated for adolescents and young adults with cancer within the new children's hospital and there will be appropriate and flexible transition arrangements for children and adolescents to adult services at other designated centres. This will include the appointment of adolescent/ young adult oncologists and haemo-oncologists and age appropriate psycho-social support.  

 

Text GOLD to 50300 to donate €4 to Childhood Cancer Foundation 

Text costs €4. Childhood Cancer Foundation will receive a minimum of €3.25. Service Provider: LIKECHARITY. Helpline: 0766805278.