Author Archives: Sue

New Chair and Vice Chair for ICPCN Board of Trustees

Sabine Kraft (centre) hands over the reins of the ICPCN International Board of Trustees to Paul Quilliam (left) with Chief Exec, Prof Julia Downing, looking on 

The annual meeting of the ICPCN Board of Trustees took place on Wednesday 22 May in Berlin, Germany. On completion of her term of office, former Chair of the Board, Ms Sabine Kraft, was thanked sincerely for her service to the organisation as chair.

Founding member

Sabine is a founding member of ICPCN, a member of the original Steering Committee set up in 2005 and since May 2011 has been and remains a member of the ICPCN Board of Trustees. She served as Vice Chair for two years and as Chair since 2016. 

Sabine is a founding member of ICPCN, a member of the original Steering Committee set up in 2005 and since May 2011 has been and remains a member of the ICPCN Board of Trustees. She served as Vice Chair for two years and as Chair since 2016.

On her time in office, Sabine had this to say, “It was an absolute honour to me to be the chair of the ICPCN. I admire every family that has to live with the challenges of a very sick child and every care person who helps in these difficult times. If we achieved that even one more child received proper palliative care, then every effort was worthwhile.

The ICPCN is a small organisation with a huge task and wonderful and professional staff. It’s been a pleasure to work with each one, including the professional board members and with Julia as the CEO. She had to manage quite a few challenges and she surprised us many times with the successes she could achieve within such a short time. My appreciation also goes to Joan Marston as the initial CEO because without her ICPCN would be non-existent.

The financial strain that is ever present adds enormous pressure, but I believe that with events like ‚The children’s life walk‘, the ‘Hats On 4 CPC’ campaign and with input from the staff and its members – ICPCN will grow stronger and stronger.

Thank you all for your patience with me, for your support and for your trust in me. I am very happy to pass on the role of Chair to Paul and I am convinced he will lead ICPCN to make the progress needed to reach its ultimate goals.”

New board appointments

Paul Quilliam was appointed as the new chair of the board and Lyn Gould MBE as vice chair. Mike Palfreman remains as Board Treasurer. 

Experienced NFP (Not for Profit) director and senior executive, Paul Quilliam is the co-founder of Hummingbird House in Queensland, Australia and presently is the Tasmanian State Manager for yourtown and Kids Helpline.

On his appointment as Chair, Paul says, “It’s indeed a privilege and honour to become the new Chair of the board of ICPCN and continue to provide strong governance leadership following on from former Board Chair, Ms Sabine Kraft.  I look forward to playing my part in stewarding the mission and vision of ICPCN for the benefit of children around the world impacted by life limiting conditions.”

Lyn Gould MBE is the co-founder of Butterfly Children’s Hospices in China and is presently the Chief Executive Officer and Director of Operations for that organisation. 

Speaking after her appointment, Lyn said, “During the early years of pioneering children’s palliative care in China I learned about ICPCN and was hugely grateful for access to all the information, support and encouragement. I feel very honoured and excited to become Vice-Chair and look forward to furthering ICPCN’s vision and mission as the only international organisation supporting those who work so hard to develop and provide services for life limited and life threatened children around the world.”

You can see all those who serve on the ICPCN International Board of Trustees here

Calling national palliative care leads to strengthen palliative care language on UHC negotiations

Please help us support the retention and strengthening of palliative care language in the political declaration on Universal Health Coverage (UHC).

In September 2019, governments will be meeting at the UN High Level Meeting on Universal Health Coverage in New York to make commitments on progress to UHC. However, the work on the political declaration that will be agreed is happening right now. The first member states consultation in New York will happen on the 7th June. There will then be various negotiations through June/early July. 

If member states do not support the retention and strengthening of palliative care language during the negotiations, then it will not happen.

This is also an important opportunity for national advocates to build government support for palliative care and health care throughout our lives as part of UHC in the run up to the High Level Meeting.
We, with the IAHPC and WHPCA, have reviewed the zero draft and suggested language that we want member states to propose and support during the negotiations. To achieve this we are providing a draft letter for you (national advocates) to adapt for your government lead on UHC as well as a marked up version of changes we would like to see in the zero draft.
To influence the process we are requesting national  palliative care leads to:

  1. Adapt the letter in the link provided with your details and send it to the lead in your government on UHC. You can also attach the zero draft with markups highlighting where we are requesting text is added (attached).
  2. If possible, follow up the letter with a phone call to check it has been received and whether the government is able to propose or support this language.
  3. Engage with civil society allies in your country working on UHC to request they support this language when they are talking to your governments. Also it is important to engage and participate in any collective civil society action on UHC around this meeting.
  4. Let us know whether your government will agree to propose the language we are suggesting and supporting the stronger inclusion of palliative care in the political declaration and in commitments made at the meeting.

We are aware that there are attempts to significantly cut the political declaration so our priority is to retain paragraph 6 (which gives the definition of UHC including palliative care) as well as strengthen commitments on national health financing and primary health care throughout people’s lives.  If it is helpful to use international logos on the letter e.g. WHPCA, IAHPC and ICPCN please let us know and we will add them.
If you have any questions, please contact email hidden; JavaScript is required and email hidden; JavaScript is required

Full House for Paediatric Palliative Care Seminar at EAPC Conference in Berlin

The EAPC Paediatric Task Force were delighted to host a paediatric palliative care workshop yesterday, Thursday 23 May, at the 16th EAPC Conference presently taking place in Berlin. The workshop spanned the whole of the first day from 08.00 – 18.30. Originally planned for around 150-200 people,  over 900 people registered for the workshop, nearly one third of those attending the conference.

Meet the Expert Session

The day started with a ‘Meet the Expert’ session led by Lorna Fraser (UK) and Claire Quinn (Ireland) focused around Prevalence of Life Limiting Conditions in children. Some of the issues discussed were:

  • The WHO definition of palliative care for children
  • Identification of children with palliative care needs
  • Accessing data on children who have died
  • Challenges regarding under and over-estimating the data.
The Irish experience

Claire Quinn, CPC Nurse Practitioner and lecturer at the National University of Ireland, shared the Irish experience of developing a national policy on children’s palliative care.  She emphasised the need for collaboration as the key component of this process – from the needs assessment right through to the development of the policy. She explained that the 2005 UK figures on prevalence supported the development of the CPC policy and that understanding the need and identifying gaps was crucial to the process.  Claire also stressed the crucial role of education and the need to ensure nurses are trained to an appropriate level.

The steps described in the development process were:

  • Undertaking a needs assessment
  • Translation into policy
  • Advocacy
  • Implementation
  • Bedding in
  • Evaluation
  • And then starting the cycle again.
Session on Information and Planning in CPC

The focus of the main session was Information and Planning in Children’s Palliative Care, chaired by Lizzie Chambers (UK) and Ana Lacerda (Portugal). Kim Beernaert from Belgium started the session looking at end-of-life decision making in perinatal palliative care, drawing on the results of a study undertaken in Belgium. There was much discussion afterward , particularly with regards to intention behind decision making and ethical issues.

This was followed by Ulrika Kreicbergs from Sweden discussing parents’ perception of the care of children with SMA both in Sweden and Denmark, drawing on different papers addressing this issue. Prof Monika Führer (Germany) looked at Advance Care Planning (ACP) in Paediatric Palliative Care specifically from the perspective of parents and health care professionals.  She highlighted the challenges of conversations around ACP and the need to hold these despite knowing parents may not be ready for such discussions. The main themes highlighted included: communication, decision making and the need for time to digest information; and the need for documentation. Following on from their study they have developed a programme for ACP and are currently piloting it.

Hot topic – use of cannabinoids in CPC

Dr Sat Jassal

After a well deserved coffee break and poster viewing, Sat Jassal (UK) started the discussion around evidence based prescribing in children’s palliative care, setting out important principles, and the importance of using and learning from the evidence. The role of cannabinoids in children’s palliative care is a hot topic and Renee McCulloch (UK) addressed this. She said that often health professionals are stuck in the middle between policy makers, parents and patients with regards to the use of cannabis so it is important to have an understanding of its use. However the evidence is poor, particularly in its use in children.

Boris Zernikow then spoke on how to assess and manage neuro-irritability in children with severe neurological impairment. He set the scene with four videos of children demonstrating such irritability and then utilised a case study to demonstrate how this can be managed. He continued the evidence based theme by sharing preliminary results from a number of studies.

Contemporary issues in children’s palliative care

After lunch six presentations made up a session on contemporary issues in children’s palliative care. Presentations were chosen from submitted abstracts and included a range of topics. Three presentations looked at the use of three specific medications – Aprepitant (Bhumik Patel UK), Clondine (Aine Ni Laoire Ireland) and Tapentadol (Benjamin Gronwald Germany). Alongside this, Emma Beecham explored the use of the term ‘Quality of Life’ in consultations with children with high risk brain tumours, Rebekah Merriman looked at assessing and addressing the needs of adolescents receiving palliative care in Uganda, and Maha Atout from Jordan explored the experiences of families in Jordan with a second or third child with palliative care needs.

Final session of the day

The final session of the day addressed various challenges in paediatric palliative care including the attitudes of Consultant Physicians in Palliative Medicine in Ireland towards providing palliative care for children (Coman Hennelly) and inequalities in children’s place of deaths in Denmark (Sanne Lauren Wolff). The final two presentations of the day enabled us to think about the challenges of decision-making in palliative care (Eduardo Verhagen, The Netherlands) and Accompanying the Child at the End of Life (Danai Papadatau, Greece). Both very thought provoking presentations asking how do we make decisions, who makes them and how does this vary in different places? What is our role in supporting the family through decision making? Danai shared her experiences in accompanying the child at the end of life, the impact on us as carers and lessons learnt. She described accompanying children as being about creating a safe haven, providing a secure base, holding and containing suffering and facilitating, building, and enhancing exploration.


Poster viewing during the seminar

Posters were on display throughout with workshop. With 69 posters presented in the  category on children and adolescents, and others spread throughout the other poster categories. Posters will be available to view on the Conference website after the conference. Three posters were highlighted as the top abstracts within the category These were:

  • A program of study to increase research access and participation by Children and Young People with LLC and LLI and their families: Barriers to research access: Voices, Experiences and Solutions.
  • The BRAVES Project (Butler et al); Supporting families to clarify treatment preferences for emerging conditions in paediatric palliative care (Deinert et al); and
  • Making the invisible more visible: A retrospective study identifying children and adolescents with complex chronic conditions and their access to specialist palliative care teams (Friedel et al).
Join the EAPC Paediatric Task Force and ICPCN

The EAPC Paediatric Task Force aims to drive developments for professionals and organisations working in children and young people’s palliative care across Europe, ensuring that palliative care for children and young people has strong representation within EAPC. It brings together all those working to develop and sustain children’s palliative care services, to share learning, to develop and share research and lay a strong evidence based for CPC in Europe. An open meeting of the task force was held over lunch and it was a great opportunity to get ideas and share the work of the task force. Collaboration and networking are key to the ongoing development of CPC and linking in with the task force, along with the International Children’s Palliative Care Network (ICPCN) are two ways of  doing this.

To join the EAPC Paediatric Group please email email hidden; JavaScript is required  More information can be found at

To join the ICPCN please go to

Palliative Care at the 72nd World Health Assembly

This week, the 72nd World Health Assembly Session is underway in Geneva, Switzerland – with a host of consequential health topics discussed including the theme,”Universal Health Coverage: Leaving No-one Behind”.

Follow deliberations on Twitter at: #WHA72; #PalliativeCare

Watch live coverage of  plenaries at:

Today, May 21st at 7pm local time, the IAHPC will be hosting the only side event on palliative care titled: Palliative Care and Universal Health Coverage: a Component of Primary Health Care. The event is sponsored by the governments of Panama and Malaysia.

Neglected component of global health care

“Palliative care is the neglected component of global health and primary health care, both of which prioritise the prevention of ‘premature mortality’, maternal child healthcare, epidemics and infectious diseases,” said Katherine Pettus, Advocacy Officer for IAHPC.

“All of these are important, of course, but the ideology of global health provides an incomplete picture unless it takes into account how people die, where they die, and the fact that palliative care services as part of primary care, can support patients and families to and through natural death. As Advocacy Officer for IAHPC, it’s my job to relentlessly remind WHO member states of this at venues such as the WHA,” Pettus said.

Side event

Panelists and topics at the side event will include:

  • Hon. Dr. Dzulkefly Ahmad Health Minister of Malaysia Topic: The Sabah palliative care model and government support for integration of palliative care into primary health care (5 minutes)
  • Representative of the Mission of Panama Topic: Availability of essential palliative care medicines in primary healthcare (5 mins)
  • Dr. Felcia Knaul Chair, Lancet Commission on Pain and Palliative Care Topic: Findings of the Lancet Commission on Pain and Palliative Care regarding the abyss in access to palliative care, primary healthcare as platform to improve population access, and presentation of the Essential Package for low-and-middle income countries (5 mins)
  • Dr. Stephen Watiti, Uganda. Expert patient and palliative care provider perspective. Topic: Nurse training and certification to provide palliative care and prescribe essential controlled medicines at the Hospice Africa Institute (5 mins)
  • WHO Secretariat Topic: Presentation of guides and update on technical work of clusters (5 mins).

Further information on the side event is available below:

Advocacy note in English:
Flyer for Side Event:
Programme for Side Event:

Declaration calls for the right of South African children to receive palliative care

The Declaration

You are asked to sign a declaration made by PatchSA (the SA children’s palliative care network), calling for palliative care for every child with a life-threatening or life-limiting illness in South Africa.

The declaration originated at a High Level National Stakeholder Meeting for children with serious illnesses held near Johannesburg earlier this year and articulates the need for children’s palliative care (CPC) to be recognised and for palliative care services for children to be implemented across the country.

Estimating the need 

It is estimated that more than a million children in South Africa need palliative care, however, families of these children soon discover there are very few services available to help them. This, despite South Africa being a co-sponsor of the World Health Assembly Resolution calling on all member states to include palliative care within their health systems, including paediatric palliative care in 2014.

In 2017 South Africa’s first national policy on palliative care was passed by the National Health Council and the Minister of Health appointed a Steering Committee to guide the Department of Health to implement the policy but the implementation of the policy has stalled due to a lack of funding.

CPC should be part of basic health services

On 18 March 2019 a subgroup of this Committee called a meeting to consider how to move forward on the stalled policy, particularly for children. The meeting was co-hosted by PatchSA and the national Department of Health.

Addressing the meeting, veteran health rights campaigner, Mark Heywood, called the current situation in South Africa “unlawful” explaining that the South African constitution requires the government to implement the national policy so children have palliative care as part of basic health services.

Heywood described how Section 28 of the Constitution aligns with international human rights, holding that children’s rights are of paramount importance, stating “there is a duty on government to implement the policy immediately to protect children from harm.” He insisted the government may not incrementally implement the policy over time according to available resources.

Currently, without implementation of the policy, hundreds of thousands of children across the country do not receive the palliative care to which they are entitled.

The additional burden of poverty

In addition, many South African parents living in poverty have to give up work to look after their seriously ill children. A tragic story was shared at the meeting of a small child terrified to die, knowing that if he did, the Care Dependency Grant, the only income for their family, would stop. Recommendations that the Department of Social Development extend the Care Dependency Grant by three months into the bereavement period to support grieving parents as they attempt to return to work were tabled.

No neuropathic pain medicines for children on the Essentials Medicines List

The South African Essential Medicines List used by doctors in public health care facilities to prescribe medicines, does not include suitable medicines for neuropathic pain in children. As a result an additional recommendation was agreed that neuropathic pain in children be recognised, and that suitable medicines to address this suffering be included in this list.

Delegates attending the meeting committed to support a Declaration calling on government to remember the ICPCN Declaration of Cape Town of 2009 and to:

  • take immediate steps to realise the new policy including leveraging funding for paediatric palliative care,
  • establish eight key regional posts in the public sector,
  • distribute the paediatric palliative care guidelines, and
  • monitor the ordering of morphine nationally.

Please sign the Declaration here.

ICPCN calls for children’s palliative care for all this World Health Day 2019

The focus on this World Health Day, 7 April 2019, is Universal Health Coverage, with the theme ‘Universal health coverage: everyone, everywhere’.

Universal health coverage is WHO’s number one goal. Key to achieving it is ensuring that everyone can obtain the care they need, when they need it, right in the heart of the community and without financial hardship.

Progress is being made in countries in all regions of the world but millions of people still have no access at all to health care. Millions more are forced to choose between healthcare and other daily expenses such as food, clothing and even a home. WHO reports that around 100 million people are pushed into extreme poverty each year because of out-of-pocket spending on health.

Palliative care as part of UHC

Universal health coverage (UHC) means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

Message from our Chief Executive

This World Health Day, Professor Julia Downing, Chief Executive of ICPCN writes:

 “We know that at least half of the people in the world do not received the health services they need, and within children’s palliative care it is estimated that between 90-95% of children globally needing access to palliative care don’t get it. Palliative Care is a core component of Universal Health Coverage which aims to ensure that all people have access to the quality health services they need, when and where they need them, without financial hardship. Thus, by making Universal Health Coverage a reality we will improve the lives of children and their families needing palliative care around the world. Health is a human right so let’s make universal health coverage a reality, and with it access to palliative care for children.”

You can download our Fact Sheet below by clicking on the picture.