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A message from our Chief Executive
 Dear friends and colleagues
“It is important that people understand that palliative care is about living and not just dying.” Too often people have either never heard about palliative care, or else they think it is just about dying, about the end of life period only. We need to think about how we portray children’s palliative care, how we get the message across that it is so much more – that it enables children and their families to have quality time together, to get on with the process of living, whilst accepting that their lives may be limited. This was one of the themes that was raised for advocacy at a recent meeting in Sharjah, UAE.
The Global Forum on NCDs for Children and Youth was held by NCD Child and the Friends of Cancer Patients and explored a variety of current issues within the care of children with NCDs, including cancer and palliative care. An important aspect of the forum was the development of young advocates, and helping them to explore different areas, to learn about advocacy and to begin to be part of a young leaders programme to develop the leaders of the future.
Palliative care for children was integrated throughout the forum and it was great to get such a focus on the field. However, it raised that important question about how we portray children’s palliative care and how others see it. I think this is a challenge that many of us face – either this lack of knowledge about palliative care or a misunderstanding. We need to think about how we can change this, how we can get people, organisations, governments to understand the real value of palliative care for children and their families, so that we can continue to support CPC development globally.
Advocacy is a key theme in all that we do. In the last newsletter I talked about advocacy at the WHO Executive Board meeting in Geneva. We have recently been granted special-accreditation to participate in the UN High level meeting on Universal Health Coverage in September and also the interactive multi-stakeholder hearing at the end of April and are hoping that some of our colleagues in the USA will be able to attend on our behalf. The purpose of the Hearing later this month is so that the perspectives of stakeholders can be heard on urgent actions and investments for UHC and to see how the UHC political declaration i.e. the outcome of the High Level Meeting in September, can add value and set milestones to accelerate progress towards the achievement of UHC by 2030. This is our opportunity to influence the political agenda on UHC and ensure that children’s palliative care provision is a core component of any UHC programme. The outcome of the meeting will be a summary from the President of the UN General Assembly circulated to all Member States and other stakeholders. We are excited to be part of this discussion and that the importance of the global voice on children’s palliative care through ICPCN has been recognised. We will keep you informed as to progress and if you have any key issues you wish to raise regarding UHC and children’s palliative care, please do email me so that we can feed it into the discussions as appropriate.
I am often asked how many children around the world have access to palliative care – we used to say that only around 5% of those who need it have access to it. I was challenged recently as I said that I thought it was between 5 and 10% - maybe 10% is too high, however much has happened in the last few years with regards to the development of children’s palliative care and I am continually hearing about developments and news services, so we must be reaching more children and their families than we were a few years ago. Regardless as to whether it is 5% or 10% or somewhere inbetween, the fact is that we still have a long way to go to ensure that all children globally who need palliative care have access to it, and ICPCN is committed to continuing advocating for and supporting the development of CPC around the world.
The opportunities for learning from each other are ever increasing: it was great to be part of the recent Indian Association of Palliative Care Conference in Kochi; the EAPC CPC Seminar is coming up next month; the APHN and APCA also have conferences later this year. It is interesting to see the developments in CPC at these conferences and to get to meet some of our members. Last month we had an interesting workshop in Durban about what we tell the children – you can read more about this below, but we were excited to be working with Prof Alan Stein from the University of Oxford on this project and will be holding another workshop in Uganda next month. You can also read more about some core principles for talking to children about illness and death published by Prof Steins team in the Lancet last month.
As a network we are keen to hear from you so please do let us know of key events, milestones that are happening with regards to children’s palliative care in your workplaces, country and region. As I mentioned previously, we are in the process of updating our map of children’s palliative care services and so some of you should receive a questionnaire from us in the next couple of weeks - please complete it and send it back to us.
Prof. Julia Downing
Chief Executive
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Global Challenges in Paediatric Palliative Care - EAPC Conference Seminar
A full day seminar, Global Challenges in Paediatric Palliative Care, will take place on Thursday 23 May
You are invited to attend the 16th World Congress of the EAPC in Berlin from 23 - 25 May 2019. The congress "Global palliative Care - Shaping the future" will explore how palliative care fits with the current global health agenda. The congress includes a full day seminar on Thursday 23 May from 08:00 to 18:30. The programme for this seminar includes:
- Prevalence of life-limiting conditions in paediatric palliative care Lorna Fraser (UK) & Claire Quinn (Ireland)
- Information and planning in children's palliative care Kim Beernoert (Belgium), Ulrika Kreicbergs (Sweden) and Monka Führer (Germany)
- Symptom management in Paediatric Palliative Care Sat Jassal (UK), Renee McCullough (UK) and Boris Zernikow (Germany)
- Contemporary Issues in Children's Palliative care
- Challenges in palliative care Eduard Verhagen (The Netherlands) and Danai Papadatou (Greece)
Go to the conference website
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What do we tell the children? ICPCN participates in focus group workshop
ICPCN was part of a focus group workshop recently held in Durban, South Africa, looking at the unique challenges of communicating with children in low and middle income countries about their own or a parents life-threatening illness.
Workshop participants met for a two-day workshop at the Health Sciences Research Council offices in central Durban.
Many health care providers find talking to children about their own or a parent's life-threatening illness a daunting task. Despite this, it is generally recognised that knowledge and understanding of their illness or that of a parent is important and leads to improved treatment adherence, mental health and the optimal functioning of the family.
Under the auspices of Oxford University and with the collaboration of ICPCN and Umduduzi – Hospice Care for Children a group of healthcare providers and relevant stakeholders met last week for a two-day workshop in Durban, South Africa. The group were asked to give critical input into the development of guidelines for healthcare professionals to communicate with children in low and middle income countries about their own or a parents life-limiting or life-threatening condition.
Workshop participants included doctors, nurses, social workers, a teacher, a lay counselor and a translator. The workshop was led by researchers from Oxford University - Professor Alan Stein, Professor Sue Ziebland, Louise Dalton and Dr Elizabeth Rapa.
Read more
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The Lancet publishes papers on core communication principles for talking to children about illness and death
The global prevalence of life threatening conditions in children and parents makes it an urgent priority to develop child-focused communication guidelines for healthcare professionals to support families in their time of need.
On Thursday 14 March The Lancet published two groundbreaking papers collating evidence and global expertise to derive core communication principles to assist healthcare professionals in communicating with children about their own life threatening condition, or that of a parent.
These papers, led by a team at the University of Oxford, highlight the importance of communicating with families about life threatening conditions in ways that can make a real difference to the traumatic circumstances in which families find themselves.
Professor Alan Stein, senior author and Child and Adolescent Psychiatrist, University of Oxford, said, “This important Lancet series offers principles to guide conversations between health professionals, children and their parents about life threatening illness. There are huge time pressures on healthcare professionals and concerns about how to get it right for families.”
Read more
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High level stakeholders meeting highlights constitutional imperative to provide palliative care to children in South Africa
A high level stakeholders meeting was held in Johannesburg, South Africa on Monday 18 March. The meeting highlighted the constitutional imperative to address the need for palliative care for children in the country.
The meeting provided information on the national palliative care policy and set goals to achieve better provision of children's palliative care across the country. Key stakeholders in children’s health and welfare in government and the NGO sector attended the meeting convened by the Children’s Task Team, a sub-group of the Minister of Health’s Steering Committee on Palliative Care, and PatchSA.
Speakers who addressed the meeting included KZN MEC for Health, Dr Sibongiseni Dhlomo, Dr Michelle Meiring, chair of the national children's palliative care network - PatchSA, Huyaam Samuels, representing the voice of a person receiving palliative care, Mark Heywood, Executive Director of +Section27 an organisation seeking to achieve equality and social justice in South Africa and Dr Charmaine Blanchard.
Background to the meeting
In a press release sent out earlier, PatchSA provided background information to inform the context of the meeting.
More than a million children are dying from – or living with – incurable conditions, sometimes in great pain. The state has a duty to protect children from suffering, especially the hidden suffering of seriously ill children.
Although South Africa can boast a comprehensive palliative care policy, it has not yet been implemented. This means that very ill children are suffering unnecessarily with their families in great distress.
In May 2016, the Health Minister, Dr Aaron Motsoaledi, appointed a 12-member steering committee to develop a palliative care policy. The policy was approved by the National Health Council in April 2017 and by 2018, an implementation plan had been proposed. The strategic framework included :
- Specialist palliative care teams in all major tertiary hospitals and large district hospitals.
- Access to Palliative care beds in hospices, sub-acute facilities and some hospitals.
- The Essential Medicines List to include up-to-date palliative care medications and to make them available to all patients who need them.
- Palliative care training for all health-care officials, including doctors, nurses, allied health care practitioners, pharmacists, social workers and clergy.
A budget for the implementation of the plan was created but not approved or allocated. The goal of the meeting was to move things forward and explore how to implement the policy in an affordable and effective way.
“We have shown that palliative care is cost-effective,” says Dr Michelle Meiring, chairperson of PatchSA. “With the proper support, patients can be cared for at home and in the community. Proper palliative care improves patient’s quality of life, can decrease unnecessary readmissions and helps families cope. It can assist in avoiding costly futile treatment and also has positive spin offs for the health system in that it can improve health professionals capacity to cope and also has been shown to decrease litigation through improved communication.
Read more
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IAHPC Traveling scholarships to the 2019 OPCC and APCA Conferences
Find out if you are eligible for an IAHPC scholarship to attend the Oceanic Palliative Care Conference in Perth or the APCA Conference in Rwanda.
The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce it will provide Traveling Scholarships to support the travel of palliative care workers to attend the following educational events:
Click here for more detailed information about the application process and the online form.
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Five scholarships on offer for EPEC Training in October
Clinicians from low and middle income countries who work mostly with paediatric palliative care patients are encouraged to apply.
EPEC-Pediatrics (Education in Palliative and End-of-life Care) is offering five competitive scholarships to clinicians from low to moderate income countries currently working in the field of pediatric palliative care.
The recipients of this scholarship will be selected based on leadership abilities, commitment to moving the field of palliative care forward, and attending to underserved pediatric populations. The goal of this scholarship program is to identify medical professionals who are in a position to improve palliative care, including advanced pain and symptom management, for children both in their institution and beyond (region or country). The EPEC-Pediatrics training will take place in Minneapolis, Minnesota from 2 – 4 October and includes attendance at the Professional Development Workshop on 5 October.
Read more
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Butterfly Children's Hospices calls for applications for role of Chief Executive Officer
Butterfly Children's Hospices (BCH) in China are looking for a new executive lead to carry the NGO into its next phase of developing palliative care services for children and their families in China.
Mrs Lynda Gould MBE, present CEO and co-founder of BCH writes:
"Butterfly was set up with one aim in mind - to change the care of life-limited children and their families in China. Following a period of planning our strategy for the future involving trustees, staff, donors and others we work closely with, I am excited and confident that our plans for the coming years will bring fresh impetus to the work of BCH in China.
It is with this new season in mind that I have decided it is time to look for a new leader to carry us into the next phase of developing palliative care services for children and their families in China. Therefore, we have started the recruitment process for a new CEO and I will step aside when we have appointed to that role.
I am looking forward to a new role with BCH - working closely with the trustees and team to support them and the new CEO in the transition and beyond."
Overview of the role
This is a unique and exciting opportunity to lead an organisation which is helping to shape services in a highly energised and developing setting. You will have the chance to work with a highly committed team in China and around the world to deliver a vision which will change and impact the care of suffering children and their families for the future.
We are looking for a fluent bi-lingual (Mandarin/English) dynamic and creative leader, with the drive to lead and further develop our dedicated team. Working primarily in China, you will have an entrepreneurial approach and significant experience of securing income from diverse funding streams. Values driven, you will be adept at building and nurturing relationships with the vision to inspire and influence across the organisation and externally.
Learn more and apply.
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Featured Research
Featuring newly published papers, journal articles and research related to children's palliative care. To have your work included here, please send an email with information to info@icpcn.org
- The Prevalence of Non-prescription Cannabinoid-Based Medicines in British Children's Hospices: Results of a National Survey Authors: Tatterton MJ; Walker C, Journal of Palliative Medicine
- Individualised Advance Care Planning in Children with Life-Limiting Conditions Authors: Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group Archives of Disease in Childhood
- Advancing the Science of Outcome Measurement in Paediatric Palliative Care Authors: Harding R; Chambers L; Bluebond-Langner M International Journal of Palliative Nursing
- Research Priorities in Pediatric Palliative Care Authors: Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R Journal of Pediatrics
- Memory-Making in Neonatal End-of-Life Care Authors:Thornton R; Harms L; Nicholson P Journal of Pain and Symptom Management
For a comprehensive library of paediatric palliative care related literature, visit the PedPalASCNET website
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Upcoming Conferences and Events
The ICPCN website has a regularly updated Calendar of Events listing events related to children's palliative care taking place around the world. Contact us to have your event listed on this calendar at no cost.
- 15 - 17 April NHPCO Leadership & Advocacy Conference 2019 Washington DC, USA
- 9 - 11 May 7th International Congress on Neuropathic Pain London, UK
- 23 May Paediatric Palliative Care Seminar at the EAPC World Congress Berlin, Germany
- 23 - 25 May EAPC 2019 16th World Congress of the EAPC Berlin, Germany
- 1 - 4 August 13th Asia Pacific Hospice Conference Jawa Timur, Indonesia
- 26 - 27 August 30th International Conference on Pediatric Nursing & Health Care 2019 London, UK
- 27 - 29 August REPSSI Psychosocial Support Forum 2019 Windhoek, Namibia
- 17 - 20 September 6th International African Palliative Care Conference Kigali, Rwanda
- 23 - 26 October SIOP 2019 (International Society of Paediatric Oncology) Lyon, France
- 5 - 8 November 12th International AORTIC Conference Maputo, Mozambique
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PPC Learning in the UK: Summary of a national meeting
Dr Sue Neilson and Katrina McNamara report on a meeting held in Birmingham on 29 January this year to discuss the way forward for education in paediatric palliative care in the UK. The meeting opened with an overview of UK nursing and medical CYP palliative care learning and the international perspective. A series of four focus groups were held exploring the: need to standardise pre and post registration interprofessional learning, facilitators and barriers to developing and delivering education and training, models of delivery and developing learning that is fit for purpose and future proof. Each focus group had a designated facilitator. Delegates were assigned to working groups, rotating to each of the 4 focus groups in turn. The collated findings from each focus group were then discussed collectively, the discussion chaired by Professor Myra Bluebond-Langner, True Colours Chair in Palliative Care for Children and Young People.
Read more
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First BCH 'Butterfly Wing' opens in China
Butterfly Children’s Hospices (BCH) is delighted to share that the beginnings of their five-year plan to improve care to fragile and vulnerable children became a reality when the ‘Butterfly Wing’ on the medical floor of an orphanage in Changsha, China was officially opened in January this year. The renovation has been a team effort to get this far and the team at BCH expressed appreciation for all of the hard work that went into this project; from builders to decorators and everyone else in between. To achieve this exciting new milestone, the orphanage, to which the hospice has had a long-time connection, provided them with rooms on their medical floor. These were renovated to their specification to create the Butterfly Wing boasting 6 cots, a bedroom, day room, food preparation room, and bathrooms to cater for children of all ages and sizes.
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A new CP Chair for Shadreck
Earlier this year we shared Shadreck’s story on ehospice. The article, shared with ehospice by paediatric palliative care nurse Beatrice Mang’anda, spoke of the hardships experienced by his aunt and her family who, while living in extreme poverty, were doing their best to care for Shadreck. Along with an Occupational Therapist from Mzuzu Central Hospital, the CPC team from the hospital have been helping to support Shadreck and his family. Shadreck’s story touched the hearts of the ICPCN staff who reached out to Beatrice to ask how they could, at the very least, provide the much needed CP chair so that he could sit up and interact with family and friends. We are thrilled to report that with money donated by ICPCN staff members, a brand new custom made CP chair has been delivered to Shadreck and the family has been provided with some nutritious food and supplies to assist with his day to day care.
Read more
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