United in helping families fight childhood and adolescent cancer.
To achieve a national cancer community that provides best possible care for all children, teenagers, young adults and their families.
We Aim To:
- Create a strong membership of parent run organisations, and support for those wishing to form new groups.
- Help groups to develop as strong advocates and providers of care.
- Invest in programs that promote the wellbeing of children, young people and their families.
- Lead with a national representative voice for children, young people and their families.
- Develop relationships between UK member organisations and the international childhood cancer community.
- Care for families who do not have access to an obvious or appropriate group, so they feel supported, not isolated.
- Advocate development of support groups at all major UK child and adolescent cancer treatment centres.
- Network our members to share best practice and work together to enhance care.
- Co-ordinate specialist working groups to enable a collaborative response to need.
- Engage with medical professionals, government and organisations at national and international level to advance childhood & adolescent cancer care and research.
- Represent the interests of our member organisations as a united national voice for children, teenagers, young adults and their families affected by cancer.
A National Voice
We work with medical professionals, government, charity organisations and other national bodies to provide a greater voice for children, families and survivors. We provide representative input on a wide range of policies and initiatives affecting children and young people with cancer and their families.
We represent families’ views on various working groups, committees and forums. These include:
National Institute of Care Excellence (NICE) guidance development
Department of Health/NHS planning and working groups
Children’s and Young Person’s Cancer Services
National Cancer Intelligence Network Clinical Reference Group for Children Teenagers and Young Adults: Data is collected into a central database for each child diagnosed with cancer across the UK. The CTYA working group ensures the available data is used to improve clinical care. We identify the key clinical outcome measures, and advise on the data that need to be collected at point-of-care to monitor these outcomes. We commission, review and publish analyses of collected data. We monitor and link various data sources to expand our knowledge and understanding of clinical performance and patient outcomes and patient reported experience and outcomes. We also work to identify ways in which data can aid informed decision-making for patient families.
Contact: an award-winning quarterly magazine dedicated to sharing knowledge of childhood cancer issues. CCPA is a partner on the Editorial Board. Articles range in focus from diagnosis through treatment and recovery, as well as bereavement. Contact provides support, education and hope through a mix of information articles, research reports and human interest stories. The publication is highly relevant to both families and professionals in the field. Contact is distributed through the Children’s Cancer and Leukaemia Group (CCLG) to all CCLG treatment centres, and free of charge to affected families. The magazine can also be viewed, listened to or downloaded on-line: http://www.cclg.org.uk/contact/index.php?2id=10
Cancer 52: a consortium of organisations representing the less common cancers. All childhood cancers fall into this category. After the “Big Four” (breast, bowel, lung and prostate), less common cancers account for 52% of cancer related deaths in the UK. Cancer 52 campaigns on a number of shared issues, particularly GP knowledge, as GPs hold the key to early diagnosis.
An International Voice
We represent the UK within Childhood Cancer International. CCI is a global network of parent led organisations with the common goal of caring for families affected by childhood and adolescent cancer. Founded in May 1994, CCI has more than 170 members in 90+ countries. CCI works with global organizations to promote awareness and action for children with cancer. These include the International Society of Pediatric Oncology (SIOP) and World Health Organisation (WHO).
We represent the UK in patient/parent groups, clinical research groups and others. Many are organised in conjunction with global or European meetings of the International Society of Paediatric Oncology. With the growth of EU-wide and continental initiatives, regulations and research, we have a valuable European role.
We participate in the annual joint world congresses of SIOP and CCI. We were delighted to serve as parent/survivor host of the 2012 congress – the first time the event had come to the UK in 30 years. This hugely successful conference brought together more than 2,000 medical professionals and parent/survivor advocates from all over the world. CCPA members joined us to share best practice in serving childhood and adolescent cancer patients and their families on a global scale.
CCI and SIOP support the work of World Child Cancer, which is based in London. Brainchild of our co-founder Geoff Thaxter, WCC seeks to improve outcomes for children with cancer in the developing world. In these countries, access to specialist care is limited or non-existent due to poverty and lack of expertise, medication, facilities, information, emotional support and other resources. Our Chair serves on the World Child Cancer Projects Committee, and we advocate increasing our national effort to support this excellent work.