ICPCN welcomes new members to its Board of Trustees

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The International Children’s Palliative Care Network (ICPCN) is pleased to announce the appointment of four new members to their International Board of Trustees. 

These are:

  • Peter Ellis, Chief Executive of Richard House Children’s Hospice in the United Kingdom  
  • Lyn Gould, Director of Operations and CEO of Butterfly Children’s Hospices in China
  • Dianne Gray, President of the Elisabeth Kübler-Ross Foundation and of Hospice and Healthcare Communications In the United States
  • Paul Quilliam, Co-founder of Hummingbird House in Queensland, Australia 

Speaking on their appointment, Joan Marston, ICPCN Chief Executive said, “Each of these appointees bring a wealth of experience and wisdom from their respective countries and areas of expertise and we have no doubt that each one will be invaluable in helping us extend our reach and increase awareness of the need for children’s palliative care. We are thrilled to have them join our existing, dedicated Board of Trustees.” 

ehospice asked each of the new board members to tell us about their work and their thoughts on being appointed to the ICPCN Board of Trustees. 

Peter Ellis
Peter has been chief executive of Richard House Children’s Hospice in London since 1999 and currently holds a number of positions, including:

  • Chair (and founder), Children’s Hospices across London (CHaL) – a registered company and charity comprising 6 children’s hospices that serve London. Our ambition is to reach out to more children, young people and their families and to do this better together. 
  • Chair, Engaging Communities Action Group (on behalf of Together for Short Lives (TfSL) – this group aims to introduce the public health approach in children’s palliative care across England.
  • Trustee and treasurer, Public Health Palliative Care International;
  • Trustee and treasurer, Public Health Palliative Care, UK.
  • Chair, Gasworks Dock Partnership – a community engagement project in Newham, East London.

Previously positions of leadership include the Chair of Children’s Hospices UK (Now Together for Short Lives), a trustee of Hospice UK and Chair of London City YMCA. 

Peter says that his interest in palliative care began when, as a student nurse, he looked after a dying teenager. Startled that someone his own age was dying, the experience began a journey to the realisation that not only are health care workers impacted by the death of a teenager, but also the community. He is a strong supporter of the idea that death, dying, loss and grief is everyone’s business and says that we have perhaps over-professionalised palliative care.  

On his appointment to the ICPCN board, Peter says, “I am excited about joining the ICPCN board because there is such a need to advocate for the effective and sustainable support of children and young people who die, and those with life limiting condition, across the world. This is especially critical in those countries where this work is not understood or supported well. Wherever or whenever a child dies there is such a great impact on the community.”

Lyn Gould
Lyn Gould is the Founder and CEO of the Children’s Butterfly Hospices in China. Butterfly Children’s Hospices (BCH) was founded in 2006 by Lyn and her husband Alan with the mission to advocate for and provide loving care and treatment for children with life-threatening illnesses and life-limiting conditions in China. The children in the hospices come from local orphanages, having been abandoned by their families. These children are often abandoned by their parents due to their inability to provide the necessary and expensive medical care the child requires.

On her appointment the ICPCN Board, Lyn says, “I am so delighted to be a part of the ICPCN; it is an organisation that opens doors, and the only one that truly advocates for children’s palliative care globally. Advancing children’s palliative care in China has been my life, it is my life’s work; for me, this appointment means I can now represent China, and the voice of our children on a global scale. It gives us [Children’s Butterfly Hospice] that stamp of approval, and an authority, so that when we walk into meetings with government officials and leaders, they know we are developing advocacy for Chinese children’s palliative care globally. It is our vision that Butterfly Children’s Hospices will be seen as a leading organisation within its field for work in Asia.”

Dianne Gray
Dianne Gray is the President of the Elisabeth Kübler-Ross Foundation and of Hospice and Healthcare Communications in the United States. Dianne is currently involved in a number of projects, including the building a full day workshop with a paediatric palliative care physician to present at a children’s hospital in September that will cover communication between patients, families and clinicians, she has recently created three booklets: Healing Grief in Children; Healing Grief in Teenagers and Healing Grief in Adults. She still works day-to-day with families who are going through difficult circumstances as they cope with finding resources for their seriously ill or challenged child, meeting with these families every week either in person or by phone. Dianne has recently created a project with Olivia Newton-John, Beth Nielsen-Chapman and Amy Sky who have a new CD called LIV On, which will be released in September.

Commenting on her appointment to the ICPCN Board, Dianne says, “I was raised in a global family. Our family holiday table always included guests from around the world, so my perspective is oriented toward global care. ICPCN feels like home to me! As well, I’m so excited to learn from all of the wonderful clinicians who care for families just like mine.  My expertise is in the field of mass media and communications and I think as a project and team builder, it’s a great time to incorporate more awareness of ICPCN and the need for children’s palliative care globally. 

She goes on to say, “Though my son may have died, while he was alive he taught me invaluable lessons and helped to shape my unique perspective. I really believe he lives on in the hearts of all children around the world and it is because of this, I hope to help where I can to improve care for all of them. I see him in each of them. As Joan taught me, “use language that unites us, not divides us.” I remember that every day of my life and aspire to bring that concept to my work with ICPCN.”

Paul Quilliam
In 2011, Paul and his wife, Gabrielle, founded the vision of building Hummingbird House as Queensland’s only children’s hospice, and as only the third in Australia. In June of this year they saw that dream finally realised with the completed construction of Hummingbird House in readiness to support families for respite and end-of-life care.

On his appointment to the ICPCN Board of Trustees, Paul says, “I feel tremendously privileged to join the ICPCN Board of Trustees and look forward to contributing to the strategy of strengthening global support for paediatric palliative care. I hope that my vast experience in not for profit organisational leadership, educational administration, information technology and business, can greatly complement the immense clinical experience that already exists on the Board, to add significant value to the important role of effective governance in this sector.”

About the ICPCN 
ICPCN is the only network of organisations and individuals working for the global development of hospice and palliative care for children and its International Board of Trustees, chaired by Sabine Kraft from Germany, is representative of all regions of the globe. The organisation advocates for children’s palliative care to be acknowledged and respected as a unique discipline within health care systems provided by suitably trained and qualified people to all children with life-threatening and life-shortening conditions and their families, regardless of where they live. It promotes the concept that the care of babies, children, adolescents and young adults who face a shortened life-span should include services, therapies and medications that will reduce pain and suffering and encompass all their physical, social, emotional, spiritual and developmental needs and that of their families, allowing for the best possible quality of life. 

Click here for information on the full ICPCN International Board of Trustees.

Learn more about the work of the organisation at www.icpcn.org

This article originally appeared on the International Children’s edition of ehospice

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