The International Children’s Palliative Care Network (ICPCN) is the only global organisation working to improve access to palliative care for the more than 21 million children worldwide who need it. ICPCN is recognised as the world leader in children’s palliative care (CPC) and has a globally renowned expert leadership, a wealth of educational resources and a network of members in over 140 countries.
Through its network, ICPCN are uniquely placed to advise, educate and support at a national, regional and international level on best practice in CPC. As a central repository for information relating to CPC, and with a global perspective of what is happening in the field, ICPCN are in an ideal position to strategically advocate for the development and improvement of services, the creation of palliative care policies, that include children and their families, and the implementation of these policies, thus increasing access to CPC.
ICPCN believes that…
ICPCN believes that…
- All children and young people, and their families, have the right to access good (quality) palliative care
- Palliative care should begin at diagnosis and continue into bereavement
- The child and their family are at the centre of the care that we provide
- Family are the primary caregivers and need to be empowered
- Collaboration is key to the ongoing development of CPC globally, and children and parents have an essential role in this
- CPC is about enabling life to be lived to the full
Vision, Mission and Aims
That all children living with a life-limiting or life-threatening condition and their families, will have seamless access to palliative care in order to alleviate serious health-related suffering and enhance their quality of life.
Our mission is to achieve the best quality of life and care for children and young people with life-threatening or life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care among the public, health professionals and policy makers; advocating to governments and international organisations for the global development of children’s palliative care services; expanding the evidence-base for children’s palliative care; and sharing expertise, skills and knowledge with our global network of members.
Our mission is to achieve the best quality of life and care for children and young people with life-threatening or life-limiting conditions, their families and carers worldwide.
ICPCN is the global umbrella organisation for children’s palliative care. We are a network of individuals and organisations globally working to improve access to palliative care for the 21 million children worldwide who need it. We aim to achieve our mission by raising awareness of children’s palliative care, advocating for the global development of children’s palliative care, expanding the evidence-base and sharing expertise, skills and knowledge.
To sum it up ICPCN CARES…..
The provision of up-to date information is one of ICPCN’s core functions. This is accomplished through a variety of means including this website, ehospice, our social medial platforms, reports and regular membership alerts and monthly newsletters.
ICPCN aims to provide the global voice for children’s palliative care and to advocate for the rights of children to receive the palliative care they require.
ICPCN believes that research and its dissemination is an important component of the development of children’s palliative care globally. Increasing the evidence base is vital to improve care provision, along with service delivery, education and advocacy.
ICPCN recognises the importance of making training of children’s palliative care accessible and affordable to all who need it. Thus, providing both face-to-face and online training to care providers around the world.
ICPCN supports the strategic development of children’s palliative care services worldwide through equipping, empowering and supporting network members.
Dedicated children’s palliative care services, although well established in some parts of the world, are still a relatively new development in others. The impetus to establish ICPCN was born from a desire to raise awareness of the unique and specific palliative care needs of babies, children and young people and for these to be seen as distinct from adult palliative care. The organisation’s founders wanted to develop a network that could share good practice and expertise and enable agencies across the world to develop a range of dedicated children’s palliative care services.
ICPCN was therefore established in 2005 in order to raise awareness of the need for children’s palliative care worldwide; to share knowledge, skills and resources; to ensure the voices of children and families were heard; and to advocate for more resources for children’s palliative care globally. The ICPCN is a registered charity and non-profit company in the UK and South Africa.
- Initial concept for an international network realised when the ICPCN Steering Group, consisting of global children’s palliative care representatives, is formed in Seoul, South Korea, in March.
- Joan Marston (South Africa) elected as Chair; Barbara Gelb and Lizzie Chambers from the UK are chosen as Vice Chairs.
- International Steering Group established with additional members from the USA, Canada, Argentina, Belarus, Australasia, Uganda and India.
- First Three Year Strategic plan developed.
- Launch of ICPCN website, with seed funding from The True Colours Trust, based in the UK.
- International Information Officer employed in South Africa, and free online membership offered to individuals and organisations.
- The ICPCN Charter published in October setting out the international standard of support that is the right of all children living with life-limiting or life-threatening conditions and their families (currently available in 25 languages).
- Networking and addition of organisations to website directory commenced, providing a basis for mapping of available CPC services worldwide.
- First International African congress on CPC held in Cape Town, in partnership with Children’s Hospice International (CHI), which inspired the ‘The ICPCN Declaration of Cape Town’.
- Beacon Project launched in South Africa, Tanzania and Uganda, with funding from the Diana Princess of Wales Memorial Fund, focussing on the development of CPC and relevant education.
- Launch of the Textbook Children’s Palliative Care in Africa, edited by Dr Justin Amery with funding from the Diana Princess of Wales Memorial Fund. Foreword written by Sir Elton John.
- This project led to the development of a diploma course in CPC, now available through the Mildmay Institute of Health Sciences in Uganda.
- Partnered with Cardiff University to hold the 5th International Cardiff Paediatric Palliative Care Congress in Wales.
- Work continues on developing short CPC courses for Beacon Project taking place in South Africa, Tanzania and Uganda.
- ICPCN Fact book on Children’s Palliative Care in South Africa published in July.
- In October, UK Dept of International Development (DFID) approves application for ICPCN to work on improving access to CPC in Malawi and India (Maharashtra District) over a five-year period in conjunction with Help the Hospices.
- Scientific Committee is constituted with members representing a diversity of professions and regions from around the world.
- Registered as a Charity and Company in England and Wales.
- Registered as a Company and Public Benefit Organisation in South Africa
- Steering Group replaced with a Board of Trustees, with Barbara Gelb (UK) and Lizzie Chambers (UK) elected as co-Chairs.
- Joan Marston (SA) appointed Chief Executive; along with part time Admin officer; and a consultant to lead on education and research.
- Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care’ published in October, giving voice to children and their families from across the world.
- Sr Frances Dominica, founder of the world’s first children’s hospice, becomes ICPCN’s first patron
- First ever in-country training in CPC is provided to 42 paediatricians, doctors and nurses, in partnership with Kenya Hospice Palliative Care Association (KEHPCA).
- Training programme in Kenya leads to the opening of the very first children’s palliative care unit in Garissa, Kenya
- Launch of ICPCN e-learning programme, with first pilot course on ‘Pain Management in Children’ linked to WHO guidelines for persisting pain.
- A systematic review of CPC provision around the world led by Caprice Knapp with members of the Scientific Committee, reveals that 65.6% of countries have no known CPC activities, 18.8% have capacity building activities, 9.9% have localised provision, and only 5.7% of countries have provision reaching integration with mainstream providers.
- A full time Admin and Finance Officer, and a full time Advocacy Officer appointed in South Africa.
- Master Class on CPC for over 50 doctors and nurses is hosted by ICPCN in São Paulo, Brazil
- Delphi study on ‘Priorities for global research into CPC’ is completed.
- CPC Training provided to health professionals in Kenya and Swaziland.
- Launch of ehospice, a free website and app reporting global news and intelligence on hospice and palliative care.
- ICPCN is responsible for editing the International Children’s edition of the new ehospice bulletin.
- ICPCN advocates to the World Health Assembly for the development of CPC services, the provision of appropriate pain medications in formulas for children and the training of relevant service providers.
- Ground breaking research project, completed in partnership with UNICEF, provides an analysis of the need for CPC in South Africa, Kenya and Zimbabwe.
- ICPCN trains health professionals in Sudan, South Africa, Indonesia, Serbia, Russia, Swaziland and Zambia.
- Updated e-learning website launched, with modules now available in English, French, Russian, Serbian and Spanish.
- In collaboration with the Indian Association of Palliative Care (IAPC), 3 sites for CPC are set up through the Two Country Project in Mumbai, Jawhar and Kalamboli.
- In association with the Palliative Care Association of Malawi, 3 sites for CPC are set up in Kamuzu in Lilongwe, Mazuzu in the north and Zomba in the south.
- The 1st ‘Hats On for Children’s Palliative Care Day’ was held (#HatsOn4CPC). It was a great day with participation from around the world and #HatsOn4CPC Day became an annual event on the 2nd Friday of October.
- The 1st ICPCN International Conference was held in Mumbai, India, in association with the Tata Memorial Centre. The conference theme was “Transforming children’s palliative care – from ideas to action”.
- The ‘ICPCN Mumbai Declaration‘, issued at the end of the Conference, calls on governments to develop CPC services and urges the Belgian government to reconsider their ruling on the euthanasia of children.
- Alongside colleagues, ICPCN advocates for and ensures the inclusion of children in the wording of a landmark resolution to develop, strengthen and implement palliative care policies that was subsequently passed at the 67 World Health Assembly in Geneva.
- Worked with Moonshine Movies to produce the Little Stars series of short films and a feature length film on CPC services around the world.
- ICPCN trains health professionals in Namibia, Serbia and Malaysia and continues to develop the e-learning programme
- A side-event on CPC was held at the 68th World Health Assembly in Geneva, which was attended by Dr Margaret Chan, the Director General of WHO
- The 2nd ICPCN International Conference was held in Buenos Aires, Argentina. The conference theme was “Children’s Palliative Care….Now!” emphasising the need of palliative care for children now, as the future will be too late for many of them.
- The ‘ICPCN Commitment of Buenos Aires’, issued at the end of the Conference, calls on governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families.
- Pope Francis gave his blessing to the ICPCN NOW campaign which marked 10 years of successful advocacy and support of CPC worldwide, sending his best wishes for the occasion whilst encouraging continued efforts on behalf of all children in need of palliative care.
- Joan Marston retired at the end of October as ICPCN’s Chief Executive.
- Prof Julia Downing was appointed as the new Chief Executive of ICPCN from November 2016.
- ICPCN’s research into the global need for CPC is published estimating that >21 million children globally need palliative care with >8 million needing specialised care.
- ICPCN Board member Lyn Gould received an MBE for her services to the provision of palliative care to babies and infants in China.
- CPC programme launched in Lesotho following training on CPC by ICPCN in collaboration with the Lesotho Ministry of Health.
- ICPCN involved in providing training on CPC in India, Austria, Malaysia, Rwanda, Dubai, The Netherlands, Senegal, Lesotho, Singapore, Spain, Tanzania, Italy, Uganda, UK and the Czech Republic
- ICPCN appoints full-time Education Officer to oversee the ever expanding e-learning programme.
- ICPCN co-Chaired the 8th International Cardiff conference on Paediatric Palliative Care alongside Cardiff University.
- ICPCN develops and launches its Pain Assessment App for children and young people.
- The Lancet Commission report on “Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage” was published. ICPCN were a co-author and involved in the launch of the report and publicity focusing on the issues of CPC globally.
- ICPCN involved in providing training on CPC in China, Sudan, Indonesia, Hong Kong, Lesotho, Malaysia, Moldova, Germany, Ireland, UAE, Austria, India, Italy, Kenya, Belarus, The Czech Republic, Mozambique, Uganda, South Africa, Palestine, the USA.
- ICPCN were involved in the inaugural meeting of the PORTAGE initiative (Paediatric Oncology Roundtable to Transform Access to Global Essentials) held in Sharjah, UAE.
- The 3rd ICPCN International Conference was held in Durban, South Africa. The conference theme was “Inspiration, Innovation, Integration” and was attended by delegates from over 40 countries.
- ICPCN participated in the Founding Assembly and First National Symposium of the China Association for Life Care Children’s Palliative Care and Family Health Care Professional services Committee.
- ICPCN co-ordinated a workshop on CPC at the World Cancer Congress in Malaysia, participated in a CPC symposium in Indonesia and the Children’s Palliative Care Foundation Inauguration and Symposium in Hong Kong.
- ICPCN Supported the development of a WHO handbook on Integrating Palliative Care and Pain Relief into Paediatrics’ along with contributing to a similar handbook on palliative care and humanitarian emergencies and crisis.
- ICPCN Global Ambassador Lucy Watts meets the Director General of the WHO and speaks out for the need for palliative care for children and young people.
- ICPCN gave a keynote address at the 1st International Oncology and Palliative Care Nursing Conference in Bethlehem.
- ICPCN participated in the inaugural meeting of the WHO Global Initiative for Childhood Cancer (GICC) in Geneva and has been contributing to the programme since then.
- ICPCN is involved in a range of research including looking at children’s understanding of death and dying, the children’s palliative outcome scale, transitions, needs assessment within humanitarian settings, the impact of education on CPC service provision and the history of CPC.
- ICPCN involved in providing training on CPC in India, Japan, Germany, Uganda, Belgium, Austria, UK, Rwanda, Italy, Georgia.
- ICPCN participated in the 1st World Children’s Hospice Forum in Japan, organised by the Yokohoma Children’s Hospice Project
- ICPCN continues to work with the regional palliative care organisations to advocate for CPC including APCA, EAPC, APHN, ALCP and the Association of children’s palliative care in Eastern Europe and Central Asia.
- ICPCN worked with a team from Oxford University on developing guidelines for the communication of life-threatening illness to children in low- and middle- income settings, with workshops in Uganda and South Africa.
- ICPCN launched it’s Strategic Plan for 2019-2023 which was developed in 2018.
- ICPCN worked with WHPCA and IAHPC to develop the Berlin Declaration: A collaborative roadmap to advance global hospice and palliative care, setting out how the organisations will work together
- ICPCN worked with WHPCA and IAHPC to develop position papers on Palliative Care and Universal Health Coverage and Primary Health Care and Palliative Care.
- ICPCN participated in the UK national CYP palliative care education and training meeting which led to the development of the Children’s Palliative Care Education Standard Framework and Self Audit Tool.
- ICPCN supported the Ugandan palliative care conference held in Kampala, and the APCA palliative care conference held in Kigali, Rwanda.
- ICPCN participated in a international meeting at Chatham House on ‘Closing the global access abyss in palliative care and pain relief – A top priority in achieving Universal Health Coverage’ along with a meeting for ‘Revolutionary Clinicians’ at Hospice UK.
- ICPCN visited Firefly World Children’s Hospice in Tbilisi whilst participating the 2nd International Symposium on Palliative Care and the World Medical Association Scientific Session, and also Casa Sollievo Bimbo in Milan, Italy.
- ICPCN involved in providing training on CPC in India, UK, Turkey, in-person and then virtually around the world during the global pandemic. A new e-learning course on CPC and Covid-19 was published.
- ICPCN participated in some public hearings held by the WHO in relation to the guidelines for managing pain in children and ensuring balance to access to opioids, and their Chief Executive subsequently co-chaired one of the guidelines development committees.
- ICPCN participated in a range of global webinars including those on the State of the World’s Nursing Report, emerging infectious diseases, the Nightingale Challenge, Exploring mid and long term risks and opportunities related to Covid-19 and PC, access to controlled medicines, the ISNCC Global Classroom, AORTIC PC competencies, and Spiritual and existential health in terminal illness.
- ICPCN worked alongside IAHPC, PallCHASE and WHPCA to hold a global palliative care and covid-19 series, developing briefing notes on different aspects of care and running 14 webinars to go alongside these.
- ICPCN participate in the development of a set of global PC indicators with the WHO co-ordinated by the ATLANTES Global Palliative Care Observatory (University of Navarra) which were subsequently published in 2021.
- ICPCN’s Chief Executive chosen as part of St Christophers Pioneering Nursing programme and invited to be part of their Celebrating Nursing Advisory Panel.
- ICPCN support the University of Edinburgh in undertaking a needs assessment for CPC in The Gambia, along with a situational analysis, and subsequent training on CPC.
- ICPCN continues as a partner on the development of a children’s palliative outcome measure in the UK, helping to supervise a PhD student.
- ICPCN support several virtual conferences including the EAPC Research conference with a specific day on CPC, the EAPS conference, Best of ASCO Africa, the Symposium sur les soins palliatifs pediatriques et defense de these publique, and the Global Power of Oncology Nursing Day.
- ICPCN Sign a Memorandum of Understanding with the WHO and participate in a WHO Civil Society Roundtable with the DG on ‘Palliative care integration in Covid-19 response and other WHO Strategic Priorities leading to comprehensive primary health care under universal health coverage.’
- Children’s Palliative Care: An International Case-Based Manuel published, edited and endorsed by ICPCN.
- ICPCN begin to work with PACED – the foundation for palliative care education, working specifically with countries in Eastern Europe and the former Soviet Union.
- ICPCN and WHPCA sign a Memorandum of Understanding to work together which is subsequently evaluated in 2022. ICPCN also begins working closer with St Jude’s Global.
- ICPCN participate in the development of a global theory of change co-ordinated by the Open Society Institute
- ICPCN participated in a range of global webinars including those on Influence and advocacy: shaping the future of nursing, CYP Advance Care Planning Collaboration, Kazakhstan PC conference, PC and OSF legacy webinars, Dialogue with the experts to CureAll children with cancer in the Eastern Mediterranean Region, Launch of the CPC Education Standard Framework and Self-Audit tool (UK and international), Bangladesh/India PC Fellowship programme and Virtual Celebration of CPC, Nursing leadership in Rwanda, Philippines fellowship programme, WHO technical briefing on quality for PC services.
- ICPCN launch their monthly webinar series in September 21. Webinars continue on the third Thursday of every month on a range of topics, with participants having attended from >108 countries.
- ICPCN support several virtual conferences including the EAPC conference with a specific day on CPC, the Global Power of Oncology Nursing Day, IAPCON, UICC World Cancer Conference, the PCAU Conference, Portuguese nursing conference, the International Conference on Cancer Nursing, the Latvian CPC conference, the EAPC conference, Memorial Sloane Kettering Conference, Pioneering Nurses Conference.
- ICPCN participates in a second WHO Civil Society Roundtable with the DG on ‘Palliative care integration in WHO strategic priorities’ and then in regular quarterly meetings with the PC team at WHO Geneva and the regional offices.
- ICPCN begin working with the team from the University of Miami and partners with regards to the data for children, work which is ongoing.
- ICPCN continues to be involved in a range of research including PC in humanitarian settings, advanced care planning in children, the PANDEMIC study, a study of young people with PC needs and their experiences during the pandemic, Covid-19 and palliative care, ICPCN also continued as a member of the TfSL and APPM Joint Research Group.
- ICPCN undertake an evaluation of both face-to-face and e-learning training programmes, with participants having attended from 170 countries.
- ICPCN’s Chief Executive accepted on the International Council of Nurses (ICN) Global Nursing Leadership Initiative held virtually over a twelve-month period.
- ICPCN start working on e-learning courses on perinatal palliative care with the UK perinatal PC lead funded by True Colours Trust, and also on a course on PC in humanitarian settings with PallCHASE.
- E-learning education consultant appointed for six months to support ICPCN’s e-learning programme.
- Palliative Care: Celebrating Nurses’ Contributions was published in conjunction with WHPCA and IAHPC.
Become an ICPCN member
ICPCN membership is open to any individual or organisation working in the field of children’s palliative care, regardless of where you are based or what your profession is, if you are committed to ICPCN’s vision and mission.
Membership is free, and when joining as an organisation you will be featured in ICPCN’s online international directory and map of services. This directory is an invaluable online resource to aid communication and networking globally.
Members receive regular newsletters and are invited to submit your events, news and resources to share with other members and online visitors.