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Message from our Chief Executive
 2018 started with a bang! No gentle build up over the first few weeks, no time to catch up with all the things that I had intended to do over the Christmas and New Year break, but straight in with lots to do, and lots to plan as we continue to support the development of children’s palliative care globally. Of course, one of the big things for us in the next few months is the planning of the 3rd ICPCN conference - Inspiration, Innovation, Integration in Durban, South Africa.
We were delighted to have 190 abstracts submitted and I would like to thank the scientific committee for reading and reviewing them all. The abstracts covered a wide range of areas within children’s palliative care and came from 44 countries so we hope that we will have a conference programme that is inspirational, and shares innovations and examples of integration from around the world. We hope that you will be able to join us in Durban – please do register soon as the early-bird rate for registration is only available until the end of February.
The conference is just one of the many areas in which we are working at the moment, and much is going on within the field of palliative care. We were delighted that Busi, our Director of Advocacy was able to join in the meeting on improving access to essential medicines for children with cancer which was held in the UAE and we look forward to working on this issue alongside Childhood Cancer International and other partners in the coming months.
Our ICPCN Global Youth Ambassador Lucy Watts, had the opportunity recently to speak with Dr Tedros, the Director General of the World Health Organization following input into the Executive Board meeting of the WHO, alongside Huyaam Samuels – who will be speaking at our conference in Durban. It is great to see the work of the stakeholder engagement programme through the Worldwide Hospice and Palliative Care Alliance having an impact as we continue to advocate for children’s palliative care at the highest levels.
As January has made way for February, it is important that we reflect on all that we are doing. Are we making a difference? Are we having an impact on the lives of children with palliative care needs? And how can we improve? In the busyness of all that we do, it is sometimes hard to make time for reflection, but I would encourage all of you to do this regularly, so we can be sure that each one of us is having the greatest impact in the work that we do, as we continue to strive to making children’s palliative care a reality for all in need.
Prof. Julia Downing
Chief Executive
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ICPCN attends high level meeting on improving access to essential medicines for children with cancer
ICPCN's Director of Advocacy, Busi Nkosi, recently returned from representing ICPCN at a meeting held in Sharjah, UAE, looking at ways to improve access to global essential medicines for all children with cancer.
The 1.5 day meeting was hosted by the Friends of Cancer Patients (FOCP), Sharjah UAE under the patronage of Her Highness Sheikha Jawaher Bint Mohammed Al Qasimi and took the form of an international, multi-sectoral Pediatric Oncology Roundtable to Transform Access to Global Essentials (known as PORTAGE).
The impetus for the meeting was the recognition of the mounting role that paediatric cancer will play in global childhood mortality, leading to an imperative to take collective action aimed at improving global access to cancer medicines for children. Representatives from the global childhood cancer community, international health governance institutions, international development institutions, civil society, corporate partners, the academy and the pharmaceutical industry were present at the high level meeting.
Giving background to the meeting, it was noted that in high income countries (HICs), 80% of children with cancer are cured. However in low- and middle-income countries (LMICs), where the vast majority of children with cancer are found, the cure rates are far lower. Access to essential medicines is one of the key determinants of childhood cancer survival globally.
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Launch of International Guide to support families of children with complex needs
An international group of experts has written a guide in the form of letters to parents and professionals to introduce key experiences faced by many families faced with caring for a child with complex needs.
 This new international Guide is written by an international group and is for parents and the professionals who support their child and family. Its aim is to offer antidotes to excessive stress and strain in children and families. It also focuses on attachment between children, parents and other family members.
Anne Emerson, Associate Professor in Special Needs Education, University of Nottingham, UK, writes:
"When a baby is identified as having disabilities or complex and long-term health conditions their parents experience a range of distressing emotions which can include trauma. They may be told that their child will not achieve any independent skills or even that their child's life is in danger. However empathic the health professionals who deliver this news it still comes as a shock and can be catastrophic."
From this point family life is over-turned, it impacts on the close and extended family, often breaking natural support systems. Parents can feel helpless and hopeless which may impact on the bond between themselves and their baby. Most of all they often feel isolated, particularly when they do not know of anyone else who is in the same situation.
Research has shown that services are generally poor in meeting the needs of these families despite the numbers of health professionals who can be involved. Families report the need to manage multiple appointments and relationships with professionals. Ironically, some families find the professionals who are there to support their child inadvertently make life harder for parents and families.
An international group has written a guide in the form of letters to parents and professionals to introduce key experiences faced by many families in this situation and to highlight their needs. It is intended to help professionals think through the issues the families may face, and to develop a holistic view to the family needs. The specific need for systemic change to offer key workers and to utilise the Team Around the Child approach is highlighted.
The guide is available as a free download and can be accessed from the ICPCN website.
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ICPCN's Global Youth Ambassador's personal story of palliative care impacts the leader of the World Health Organization
As a person receiving palliative care, 24 year old Lucy Watts MBE, is a passionate ambassador for the difference it makes to people's quality of life. Her story touched Dr Tedros, WHO Director General, who arranged a phone call with her.
At the end of last month, the Executive Board of the World Health Organisation (WHO) met in Geneva. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent representatives to speak at the meeting.
Lucy Watts, along with two other palliative care direct stakeholders, Huyaam Samuels and Sharon Thompson, sent messages to be read by palliative care advocates attending the meeting.
Their words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about their healthcare.
In her own words, Lucy Watts, Global Youth Ambassador for ICPCN and a Young Avenger for Together for Short Lives, writes about this incredible experience and her work advocating for access to palliative care for children and young adults.
Read Lucy's account of the phone call here.
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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.
- 2 May Children and young people - loss, death and grief, Bristol, UK
- 17 - 19 May 2nd National Meeting of Pediatric Palliative Care, Lisbon, Portugal
- 30 May - 2 June 3rd ICPCN Conference, Durban, South Africa
- 23 - 27 July AIDS 2018 Amsterdam, The Netherlands
- 12 - 16 September IASP WOrld Congress on Pain, Boston, USA
- 2 - 5 October 22 International Congress on Palliative Care, Montreal, Canada
- 24 - 27 October 4th Global Gathering Maruzza Congress on Paediatric Palliative Care, Rome, Italy
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Trustees sought for children's charity working in China
Are you looking for an opportunity to make a difference but not sure how? Butterfly Children's Hospices in China are looking for international Trustees and Advisers to assist them in their work. Trustees can be based anywhere in the world.
Butterfly Children’s Hospices is a Charitable Incorporated Organisation (CIO), registered in the UK, working with the Chinese government to provide loving care and treatment for children with life-limiting conditions and life-threatening illnesses in China. They are also seeking individuals with particular experience of China who are willing to act as part time advisers to the charity.
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Toolkit for International Childhood Cancer Day
Childhood Cancer International has made a Toolkit available for organisations and individuals to join their campaign for International Childhood Cancer Day (ICCD) on 15 February 2018. They have provided graphic files, banners, a press release, and a short video to be used. The materials may be translated into any language.
You are encouraged to raise awareness of childhood cancer on 15 February 2018, International Childhood Cancer Day, a day which was initiated in 2002 and is now recognised by media around the world. ICCD is a day when those working in the field are called to work together to "Advance Cures and Transform Care" and to make childhood cancer a national and global child health priority.
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Launch of Dutch National Centre of Expertise in CPC
The Netherlands children's palliative care organisation 'PAL' recognised their 10 year anniversary with a day of celebration and the launch of a new information website for professionals and families.
At the end of November 2017, “PAL”, Expertise Foundation celebrated its ten-year jubilee and launched the national Centre of Knowledge and Information (“kennis centrum”) for Children’s Palliative Care. It was a very successful anniversary celebration made more special with the participation of guests who have collaborated with the PAL Foundation in the last 10 years. At the meeting, Professor Julia Downing, Chief Executive of ICPCN, spoke about the development of children's pallaitive care worldwide.
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