The ICPCN is proud of all that it has achieved since its inception in 2005. As we celebrate our 10th year anniversary in 2015, we would like to share with you some of these achievements and take stock of how far we have come in the past 10 years. The work we do can be summarised by the phrase ICPCN CARES, the word CARES being an acronym for the following facets of our work:
We also pride ourselves on the work that we have done towards our own sustainability.
We keep our members informed by…
- Providing free ICPCN membership to all who work in the field of children’s palliative care.
- Providing an up-to-date and well populated website with links to news, information and resources.
- Providing regular news bulletins signposting new research, innovations and news in the field.
- Taking responsibility for the International Children’s edition of ehospice which provides up to
date international children’s hospice and palliative care news via a website and free app.
- Issuing media releases to local and international press agencies related to events and issues aligned with children’s palliative care.
Published ICPCN resources include…
- The ICPCN Charter of Rights for LIfe Limited and Life Threatened Children. This Charter is available from this website in 24 languages.
- Children’s Palliative Care in South Africa – The Facts
This fact book can be downloaded free from this website
- The publication of the book ‘Touching Rainbows’ which acknowledged the voice of the children in paediatric palliative care by allowing them and their carers to tell their stories. This book is available for purchase from this website.
- Position papers. The ICPCN has developed a number of position papers which present the views and policies of the ICPCN with regard to a number of relevant topics. These can be accessed and downloaded free of charge from this website.
We represent the voice of the children within the following international and regional associations
- Worldwide Hospice & Palliative Care Alliance (WHPCA)
- International Association of Hospice and Palliative Care (IAHPC)
- Elisabeth Kübler-Ross Foundation
- European Association for Palliative Care (EAPC)
- African Palliative Care Association (APCA)
At a national level, we have held meetings with senior health department officials to encourage the development and integration of children’s palliative care within the following countries
- South Africa
The ICPCN has developed and published two declarations on children’s palliative care.
- THE ICPCN DECLARATION OF CAPE TOWN 2009 which calls on the worldwide palliative care community to collaborate and share resources and knowledge in order to advance the cause of children’s palliative care.
- The ICPCN Mumbai Declaration 2014 which calls on governments around the world to transform the lives of children with life limiting conditions through palliative care. It makes particular reference to euthanasia, which ICPCN does not believe to be an acceptable alternative to the relief of suffering, promoting instead the practice of good palliative care. You can sign this declaration here.
The “Awareness Alliance” was launched on 19 November at the opening ceremony of the 2nd Congress on Paediatric Palliative Care – A Global Gathering taking place in Rome. The ICPCN and the Fondazione Maruzza share the common vision of a world where palliative care is available to all children who need it. Through collaboration on specific projects, the Awareness Alliance aims to increase the public’s awareness of children’s palliative care and encourage their engagement in activities that promote the development of services worldwide.
World Health Assembly 2014
The ICPCN represented the voice of children in palliative care at the World Health Assembly in 2013 and 2014. At the 67th World Health Assembly held in Geneva in May 2014, the ICPCN contributed to the groundbreaking resolution on palliative care that was passed at this gathering. This resolution called for the provision of appropriate pain medications, including children’s formulas, and the training of relevant service providers.
World Health Assembly 2015
The ICPCN was instrumental in organising the very first side event focusing specifically on palliative care for children at the World Health Assembly 2015, held in Geneva, Switzerland. On 25 May 2015 a side event on children’s palliative care was held and attended not only by 2 Deputy Director Generals of the World Health Organization, but also by Dr Margaret Chan, Director General of the World Health Organization. Read more….
We work with the best!
The ICPCN has been responsible for the formation of Research and Education Task Forces, members of which are some of the top researchers in the field of children’s palliative care globally. These task forces work with a smaller advisory group.
Research undertaken since 2009 includes:
- Research to identify global priorities for research into children’s palliative care through a Delphi study in order to inform a global research agenda.
- A pilot study on the utilisation of e-learning for children’s palliative care.
- Research on the impact of the training programmes conducted through ICPCN.
- A study looking at the role of ICPCN in regard to the WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical illnesses.
- A study done in partnership with UNICEF that provides an analysis of the need for children’s palliative care in 3 African countries, these being South Africa, Kenya and Zimbabwe. The study has resulted in a methodology to establish palliative care needs in other countries.
- A collaborative study with FHSSA to identify successful models of children’s palliative care in sub-Saharan Africa and what makes them successful.
Other research involvement includes
- The development of a children’s palliative outcome scale (POS) in Africa
- A review of children’s palliative care worldwide
- Contribution to the evidence base for children’s palliative care through writing and publishing different publications
- The regular presentation of papers on children’s palliative care at national and international conferences around the world
Click here for a full list of research to which the ICPCN has contributed
The ICPCN has provided face to face, multi-professional training in Children’s Palliative Care in the following countries:
- Czech Republic
- South Africa
In response to the massive need for education and training in children’s palliative care, particularly in the developing world, the ICPCN has developed a state-of-the-art e-learning environment which provides online education on the following topics:
- Introduction to Children’s Palliative Care
- Pain assessment and management for children: A short course linked to the new WHO guidelines for persisting pain in children. Revised April 2012
- Childhood development and play in children’s palliative care
- Communicating with children and emotional issues
- End of life care in children’s palliative care
- Grief and bereavement in children’s palliative care
- End-of-life care
- Perinatal palliative care
These courses are available in these 8 languages: English, French, Spanish, Portuguese, Serbian, Russian. Mandarin, Dutch, Czech and will soon be available in Hindi and Vietnamese.
Access ICPCN’s e-learning curriculum at: www.elearnicpcn.org
The ICPCN has partnered with other organisations in running conferences around the world, these being:
- Children’s Hospice International Congress in Cape Town (2009)
- The Cardiff Conference hosted by Cardiff University in Wales (2010,2012. 2014, 2016)
- 1st and 2nd European Conference on Paediatric Palliative care in Rome with EAPC and the Maruzza Foundation (2012, 2014)
We held our first ICPCN International Conference on children’s palliative care in Mumbai, India in partnership with Tata Memorial Hospital in February 2014. The theme for the conference was: Transforming Children’s Palliative Care: From ideas to action.
This very successful conference hosted close to 250 delegates from 32 countries worldwide and had as plenary speakers some of the leaders in children’s palliative care in both research and practice.
Our 2nd international conference took place in Buenos Aires, Argentina from 18 – 21 May 2016, themed Children’s Palliative Care ….NOW! The conference was an enormous success with 410 registered delegates and a line-up of world renowned speakers for our plenary sessions.
Our 3rd ICPCN Conference took place in Durban, South Africa from 28 May to 2 June 2018 with the theme Inspiration, Innovation, Integration. The conference also hosted the premiere showing in South Africa of the film ‘Hippocratic: 18 Experiments in gently shaking the world” which featured the ground breaking work of Dr MR Rajagopal from Pallium India. Dr Raj was also a plenary speaker at the conference along with a world class line up of speakers including Dr Marie-Charlotte Bouësseau from the World Health Organization, Dr Sat Jassal MBE, Dr Ana Lacerda, Prof. Danai Papadatou, Dr Michelle Meiring and Dr Pat Carragher. Delegates to the conference came from 43 countries around the world.
Over 90% of delegates scored the conference good or very good in terms of the quality of thesessions, the organisation of the conference and the usefulness of the conference. !00% of those completing the evaluation gave the conference a good or very good overall assessment. Some of the comments included that the conference “gave them courage to advocate for PC”, “realising that we are not alone”, there was an “inspiring attitude throughout”. Encouragingly one participant commented that “I thought the level of presentations and research much improved on previous years, the research was more relevant and useful to practice, a very very well balanced programme and range of topics, really well done.” Another noted that “Never before have I felt so much at home at a conference. Never before have I been surrounded by so many brilliant, kind, compassionate, unassuming and warm souls all at once. People who refuse to take no for an answer, for whom no wall is too high, no boundary impervious, no child less important than the others. People who insist on looking for the humanity that unites us all.”
The ICPCN assists in the strategic development of children’s palliative care in countries where a need for the introduction of children’s palliative care has been recognised and identified. We choose to work in countries where there is the necessary infrastructure to support the foundational work that we undertake, such as Palliative Care Associations with a proven commitment to providing services to children.
We have participated in the following strategic development projects;
The Beacon Project
The ICPCN was responsible for the management of the 3 year ‘Beacon Project’ which was funded by the Diana Princess of Wales Memorial Fund in order to upscale the provision of children’s palliative care in Uganda, South Africa and Tanzania. This was achieved through the appointment of in country champions whose task it was to develop training in children’s palliative care and provide ongoing mentoring. It also promoted the development of ‘Beacon Centres’ which are centres of excellence where students could experience children’s palliative care in practice.
A result of The Beacon Project was the development of the first 12 month accredited Diploma Course in Children’s Palliative Care which can be accessed through Mildmay Uganda.
Help the Hospices and ICPCN Two Country Project (funded by UK Aid)
ICPCN provided training as well as expert consultation and mentoring for a 5 year project (ongoing) funded by UK AID through Help the Hospices to upscale children’s palliative care in India and Malawi. Read more about this project here.
In 2011, we became an independent charity registered in the United Kingdom and as a company in South Africa. We were registered as a Public Benefit Organisation in South Africa in 2013.
ICPCN is a registered charity in England & Wales (number 1143712) and a registered company in England & Wales (number 7675172) Our PBO registration number is 930043272.
Board of Trustees
We have an international Board of Trustees representing Africa, Europe, Russia, Asia, North and South America and Oceania.
We have grown from a staff complement of one in 2007 to that of six in 2018. Find out more about our staff here.
ICPCN offers individual and organisational membership free of charge to anyone working in the field or with an interest in children’s palliative care, no matter where they are based. Parents and relatives who have or who have lost a child to a life limiting illness are also most welcome to join our network.
Organisations are registered with our International Directory – an invaluable online resource to aid communication and networking across the world.
Click here to join ICPCN
Financial resources to run the organisation have been successfully sourced from a small number of loyal and recognised international funders who share our passion for children’s palliative care and without whom we would not have achieved as much as we have over the past 10 years. We are indebted to the following supportive funders:
- Open Society institute (OSI)
- Open Society Institute of South Africa (OSISA)
- True Colours Trust
- United States Cancer Pain Relief Committee
- Heb FFin
Reporting and auditing
We supply half yearly detailed financial and narrative reports to our funders which clearly show how finances have been budgeted and the outputs of the organisation.
Our financial statements undergo an annual audit and from the outset we have maintained an impeccable record in all aspects of financial management.
Our Annual Reports can be read and downloaded here.