Author Archives: Sue

ICPCN Issues a Call for Abstracts for the 3rd International ICPCN Conference to take place in Durban, South Africa

ICPCN invites all members of the multidisciplinary team to participate in this conference by submitting an abstract via the conference website. The 3rd International ICPCN Conference: Inspiration, Innovation, Integration is set to take place in the city of Durban, South Africa from 30 May to 2 June 2018 in partnership with the Hospice Palliative Care Association of South Africa, PatchSA and Umduduzi, Hospice Care for Children.

Building on the successes of ICPCN’s two previous conferences held in Mumbai in 2014 and Buenos Aires in 2016, this conference promises to bring together a global community of compassionate and dedicated people who work with children with life-limiting and life-threatening illnesses and conditions and are looking for inspirational ways to provide the finest care for these children and their families.

Conference theme
Prof Julia Downing, Chief Executive of the ICPCN and conference chair says, “We have chosen the theme Inspiration, Innovation, Integration for our 3rd ICPCN Conference to take place in the vibrant, multi-cultural seaside resort city of Durban, South Africa, from 30 May – 2 June 2018. This multidisciplinary conference will bring together the very best leaders in the field, the most experienced practitioners and trainers as well as those who are just starting out on the journey to bring palliative care to children in their communities, in order for us to learn from one another. We are also very excited to be working in partnership with the Hospice Palliative Care Association of South Africa (HPCA), PatchSA and Umduduzi, Hospice Care for Children to ensure that this conference will leave a lasting legacy for the people of the host country.”

Expanding on the reason for the theme choice, Prof Downing says, “ICPCN has been witness to the encouraging growth of children’s palliative care provision worldwide in the last decade, with new programmes and services being introduced in some places where none existed just a year ago. We are also privileged to have worked together with funders and local organisations to play a part in the development of these services. What has become increasingly evident is that while the basic tenets of the discipline remain immutable, children’s palliative care seldom looks, feels or sounds quite the same in any two countries or even within settings based in the same country.”

Learning from one another
She encourages people from all disciplines to consider submitting an abstract by saying, “What makes an international conference on children’s palliative care such an exciting opportunity is that we all have so much to learn from one another. Those who have very little in the way of resources are often the most resourceful and inspirational amongst us and those with adequate resources can be incredibly innovative in how they present their services to meet the unique needs of the children within their community. It has also become clear that unless services network and integrate with other organisations within their communities and those who wield power at higher levels, whether these be governmental or nongovernmental, we will never realise our vision of a world where children’s palliative care is available to every child who needs it.

ICPCN invites you to share your research, your successes, your most inspired and innovative ideas and we want to hear how you have gone about integrating with others to improve your reach and impact.”

To find out more about the conference, to register at the Early Bird rates and to submit your abstract, please visit the conference website at

Only 4 days left to register for the Cardiff Conference

Have you registered yet for the 8th International Cardiff Conference taking place at Cardiff University from 26 – 28 July? Registration for the conference closes on Monday 17 July, so there is limited time to register and pay for your place at one of children’s palliative care’s premium conferences.

The International Cardiff Conference has built a reputation over the years and is the academic conference to attend.

Under the expert chairing of Dr Richard Hain, Professors Daniel Kelly and Julia Downing, the conference programme promises an excellent line up of plenary and breakaway sessions. Presentations cover a wide spectrum of topics and include insights into many different cultures.

Presentations on offer include:

  • North America and the culture of children’s palliative care  Dr Adam Rapoport
  • Teaching children’s palliative care in a diverse culture  Dr Michelle Meiring 
  • Developing a paediatric palliative service based in a Chinese orphanage Caroline Sprinz and Katie Hill
  • Paediatric Palliative Care Across Western Australia  Dr Marianne Phillips 
  • What does smell feel like? Adapting multi-sensory care strategies to reflect cultural differences in paediatric palliative care (France) Rhiannon Lewis
  • Exploring palliative care needs and provision for children and young people with life-limiting and life-threatening conditions. A consultation with young people Dr Johanna Taylor
  • Meanings and experiences of sex(uality): Cultural perspectives and views from young people with life-limiting and/or life-threatening conditions Maddie Blackburn
  • But the parents wanted us to “Do everything!”: Using and teaching values guided decision support in paediatric ICU’s  Dr Ken Pituch 
  • Developing good practice guidelines for attendance at a child’s funeral: Keeping a culture and context of caring for the child, for the family and for ourselves Fiona Finlay
  • A sense of home doesn’t change with  the arrival of death. Social home care  in a paediatric palliative care: the Catalan experience Soraya Hernández
  • Demographics, symptomatology, and treatments given at the end of life, for children with cancer in a tertiary care centre in India
  • The impact of Paediatric Palliative Care  Program (PPCP) for the palliative care management team at Siriraj Hospital (Thailand) Sunsanee Ruangson
  • Te Wa Aroha/Allow Natural Death – The weaving of culture, care and communication in paediatric palliative care (New Zealand) Emily Chang, Emma Aburn & Jess Jamieson

The provisional programme can be downloaded here.

Registration and accommodation
Accommodation is available in Colum Hall on the Cardiff University Campus, within walking distance to the conference venue.

Should you have any questions, you are invited to contact Leanne Munkley on +44 (0)29 2087 6365 or by email: email hidden; JavaScript is required

Don’t hesitate! Register now

ICPCN expresses support as Dr Tedros takes office as new WHO Director-General

Dr Tedros was elected on 23 May 2017, by vote of Member States at the Seventieth World Health Assembly. He is the first African Director-General in the history of the WHO.

The new Director-General identified Universal Health Coverage (UHC) – Health for All as his top priority. He notes on his Director General webpage on the WHO site: “Our top priority must be to support national health authorities’ efforts to strengthen all the building blocks of health systems and to enact policies aimed at ensuring health care is equitable and affordable for all.”

Other priorities include: health emergencies; women, children and adolescents; climate and environmental change; and a transformed WHO.

Prior to his election as WHO Director-General, Dr Tedros served from 2012 – 2016 as Minister of Foreign Affairs, Ethiopia. In this role he led the effort to negotiate the Addis Ababa Action Agenda, in which 193 countries committed to the financing necessary to achieve the Sustainable Development Goals.

Dr Tedros served as Minister of Health in Ethiopia from 2005 – 2012 where he led a comprehensive reform effort of the country’s health system, including the expansion of the country’s health infrastructure. He has also served as chair of the Board of the Global Fund to Fight AIDS, Tuberculosis and Malaria; as chair of the Roll Back Malaria (RBM) Partnership Board; and as co-chair of the Board of the Partnership for Maternal, Newborn and Child Health.

The Worldwide Hospice Palliative Care Alliance (WHPCA), the International Association for Hospice and Palliative Care (IAHPC) and the International Children’s Palliative Care Network (ICPCN) sent a letter to Dr Tedros, congratulating him on his appointment  and reaffirming their commitment to supporting WHO in advancing global health.

The authors noted in the letter: “We welcome your long-standing experience, deep knowledge and understanding of the African and global health context, and in particular your commitment to the achievement of Universal Health Coverage.”

They went on to state the importance of palliative care as an essential, defining aspect of UHC, and requested Dr Tedros’ support in four key areas:

  1. Promote the adequate funding, implementation and monitoring of World Health Assembly Resolution 67/19 on palliative care.​
  2. Advocate for urgent attention to palliative care as an essential health service within Universal Health Coverage.
  3. In line with WHA 67/19, ensure that WHO includes palliative care in all relevant global health plans and their implementation.​
  4. Ensure WHO’s continued and increased focus and funded commitment on access to essential medicines, including to essential palliative care medications ​and paediatric formulations, necessary for the treatment of severe pain and terminal breathlessness.

The Director-General is WHO’s chief technical and administrative officer and oversees the policy for the Organization’s international health work.

Dr Liz Gwyther, Chair of the Board of Trustees of The Worldwide Hospice Palliative Care Alliance, said: “Congratulations to Dr Tedros on his appointment as DG of the WHO. His experience and understanding of issues facing the developing world will provide a strong foundation for the implementation of practical solutions to health problems and to addressing the social, economic and political determinants of health.

“He has declared his commitment to Universal Health Coverage which gives expression to the Right to Health and offers everyone access to promotive, preventative, curative, rehabilitative and palliative healthcare without financial hardship.

“We are also encouraged by his determination to prioritise the health and well-being of women, children and adolescents and to his commitment to meeting health needs of vulnerable people.”

The letter was co-signed by 50 organisations from around the world working in palliative care and related fields, such as dementia and cancer care, as well as representatives of academic institutions and major funders.

The full letter is available to view on the WHPCA website.

ICPCN provides children’s palliative care training in Prague

Participants in the 3 day training with their certificates. Trainers Dr Mike Miller and Maraliza de Haan in the centre

Children’s palliative care is still in the early stages of development in the Czech republic and at present there are only four children’s palliative care providers. The Children’s Palliative Care Taskforce, established in 2015 in the Czech Republic, made the decision to change this situation.

The Taskforce, in cooperation with ICPCN, organised an “Introduction to children’s palliative care” course in Prague for doctors, nurses and other professionals.

“This course is just the beginning of our cooperation with ICPCN; this year we want to train 10 Czech lecturers in children’s palliative care and translate the ICPCN e-learning courses to increase the capacity of local professionals”, says Jiri Krejci, manager of the Taskforce.

The first 3-day Introductory course for 2017 took place in Prague between 26 – 28 June 2017. Participants consisted of 5 doctors, 1 psychologist, 1 social worker and 4 nurses and came from towns as far as 2 hours drive from Prague. Most of them are already working in the field of adult palliative care with the vision to extend palliative care services to children.

The introduction course covered basic and important topics, including:

  • Play and child development
  • Assessment tools in CPC
  • Pain assessment and management
  • Psycho-social issues
  • Management of symptoms other than pain
  • Grief & bereavement
  • Spiritual care
  • Family care

The trainers report
On a warm June day in Prague, the 11 Czech participants met the two trainers, Maraliza de Haan (Social Worker) and Dr Mike Miller (Children’s Palliative Care Doctor). The language barrier was quickly overcome and the trainers were impressed by the participant’s English skills. Participants provided good multidisciplinary representation and included psychologists, teachers, researchers, nurses and doctors which ensured that there was a lot of shared learning. All can now quote the definition of CPC if woken at 3am!

The course proved to be more emotional than expected and was hard work, but rewarding. The two sessions of role-play were done in Czech, and seemed very real. There was excellent participation with the energy levels rising over the three day.

The Hub was a good, friendly venue that looked after us well. Like all good groups we were sorry to part but had important learning to take back to our working lives to benefit children and their families.

Reflections from participants
“I can always sense at the end of a training course, how everything went, in the mood of the participants. They are either depressed and tired, or very excited and energised. Today I see the latter, ” said Jiri Krejci, manager of the Children’s Palliative Care Taskforce.

“I realise now that working in the field of CPC we have to deal and understand emotion in ourselves and the family we work with. We are professionals and also human and that is possible in the field of children’s palliative care,” said one participant while another expressed her appreciation with the words, “I am excited to go back to my organisation to share the amazing knowledge I have gained in only three days!”

Authors: Jiri Krejci, Dr Mike Miller, Maraliza de Haan

Launch of first Chinese educational video on children’s palliative care

Butterfly Children’s Hospices (BCH) is proud to announce the launch of this educational video – the first in Chinese language and featuring Chinese mothers, health and social care staff in China and Hong Kong. The video has English subtitles.

At its pre launch viewing in November 2016 at the second national Children’s Palliative Care conference in Shanghai, it was well received and deemed both fascinating and deeply moving.

Created to educate and promote the concept of palliative care as a comforting and caring service, with an emphasis on improving quality of life for children and their families, it is also an incredibly powerful introduction for the full range of care providers and services.

This project was envisioned, lead and funded by Butterfly Children’s Hospices using a grant received from the Overseas Chinese Charity Foundation, and produced by respected Chinese film-maker Ma Chang.

BCH is indebted to individuals and organisations in mainland China and Hong Kong who gave their time and expertise for this project. The list of credits serves to highlight the breadth of interest and commitment to developing and providing palliative care services for the estimated 4.5 million life limited children and their families in China.

The video is suitable for use in health and non health care settings internationally and is available for download and showing free of charge. The video can be accessed via YouTube at

Lyn Gould,
Founder: Butterfly Children’s Hospices

ICPCN Board of Trustees meet in Madrid and receive good wishes from the Queen of Spain

Members of the ICPCN International Board of Trustees at the meeting in Madrid. Top row (l to r) Dr Delia Birtar, Dr Stephen Connor, Dr Zippy Ali, Dr Marianne Phillips, Fatia Kiyange, Dr Regina Okhuysen-Cawley, Paul Quilliam; Dr Marli Robertson. Front row (l to r) Sharon Baxter, Prof Julia Downing, Sabine Kraft

In May of this year members of the ICPCN International Board of Trustees met in Madrid for their annual face to face Board meeting. The ICPCN Board holds one face to face meeting each year. To minimise costs these board meetings are always attached to an international conference that many board members would normally attend.

This year the annual face-to-face board meeting was attached to the EAPC Conference recently held in Madrid, Spain and the first one with our new Chief Executive, Prof Julia Downing, in place. The meeting was attended by the following board members:

Prof Julia Downing (Chief Exec)
Sabine Kraft (Chair)                   Germany
Sharon Baxter (Vice Chair)        Canada
Dr Stephen Connor                    WHPCA Rep/USA
Dr Zippy Ali                                  Kenya
Dr Marianne Phillips                   Australia
Fatia Kiyange                               APCA Rep/Uganda
Dr Regina Okhuysen-Cawley     Latin America
Paul Quilliam                               Australia
Dr Marli Robertson                      Canada

One of the most important issues to discuss at this Board meeting was the 3rd ICPCN International Conference to take place in Durban, South Africa, from 30 May – 2 June 2018.

Prior to the meeting board chair, Sabine Kraft, Chair of the ICPCN Board, wrote to Queen Letizia of Spain, informing her office of the meeting to take place in her country. ICPCN was delighted to receive a formal response from the Queen’s secretary in which was written:

“Your Majesty is very grateful for your attention and instructs me that, with your most affectionate greeting, I extend to all your collaborators in the ICPCN, our best wishes for the meeting and have a happy stay in Madrid.”

The letter, on the official letterhead of the secretariat of the queen, was signed by José Manuel Zuleta.

The next face to face ICPCN Board meeting will take place before the 3rd ICPCN International conference in Durban, South Africa on 29 May 2018.