The International Children’s Palliative Care Network (ICPCN) founded in 2005, has been led by one individual, Joan Marston, as the first Chair of the Steering Committee and then subsequently as its first Chief Executive. After six years in the latter role, Joan will step down as Chief Executive today, 31 October 2016, in order to pursue personal and spiritual goals and spend more time with family, on volunteering, on writing and in a new role as a Global Ambassador for Children’s Palliative Care, with a particular focus on children in humanitarian situations.
From a background in nursing and social science, Joan has more than 30 years experience in providing and promoting the development of palliative care for children both in her home country and around the world. Married to Richard, with two adult children living in the UK, Joan is also a Lay Minister in the Cathedral in Bloemfontein and an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England.
Joan recently received the Global Palliative Care Achievement Award at the 2016 APCA conference in Uganda, presented to her by Lucy Sainsbury, Chair of The True Colours Trust. In an emotional tribute during the presentation, Lucy spoke of the passion that Joan has always shown for the development of palliative care services for vulnerable children and praised her dedication and commitment to what has been her life’s work.
Reflecting on the past eleven years at the helm of the ICPCN, Joan writes..
Change is good – both for organisations and for individuals. It brings in new vision, energy and perspective for the organisation, and frees the individual to seek new adventures and pathways.
As I prepare to stand down as Chief Executive of this wonderful organisation that is the ICPCN, there has been time to reflect on the past with gratitude and look to the future with excitement.
I have so many wonderful memories of my time with the ICPCN – from those early discussions in 2005 in Seoul, where we set out our ambitious vision of a global action network of individuals and organisations working together to take palliative care to those children who needed it across the world and allow the voice of the child and family to be heard, respected and acknowledged; to the setting up of the original Steering Group of enthusiastic children’s palliative care practitioners from every region of the world, which I was fortunate to Chair; then the establishment of the first Board of Trustees when I became the first ICPCN Chief Executive.
The very best memories are of all those beautiful children and families I have been blessed to meet, and the dedicated and compassionate people who care for them, in home care programmes, hospices and hospitals in many different countries. For all who work in this field, children and families are our teachers, as well as an enduring source of joy and inspiration.
There are so many people who have been part of this journey and I am grateful for the friendship and support of each one – especially my wonderful husband, children, family and friends; the staff, trustees (past and present) and funders of the ICPCN; so many good friends in the palliative care world with whom I have shared lots of laughter, discussion, discoveries – and good wine; as well as many friends from around the world. The gift of your presence in my life has enriched it immeasurably. Thank you so very much.
ICPCN is in very good hands going into the future and I look forward to watching further development and continuing to give support in a different way.
And so to the excitement of the future!
A good friend quoted about me “Revolutionaries never retire.” and as a human rights activist for most of my adult life, that will not change. Blessed with good health, my call to “Never forget the children!” will continue. I plan to do more for those with palliative care needs in humanitarian situations, focusing on this neglected area as I am delighted to take on the role of a Global Ambassador for Children’s Palliative Care.
Time for family, for spirituality and faith, to write and to volunteer are all part of my plan. However, just as the Lord has always been the Guide of my life, taking me on unexpected paths, I am wise enough to know these may not be part of His plan. So as I trust an unknown future to a known God, I look forward to whatever surprises it holds.
New Chief Executive
ICPCN’s incoming Chief Executive, and a worthy person to fill the ‘large shoes’ of her predecessor, is Professor Julia Downing, an experienced palliative care nurse, educationalist and researcher. Julia has been working within palliative care for 24 years, with sixteen of those working internationally in Uganda, Africa, Eastern Europe and throughout the world developing palliative care services for adults and children.
She is an Honorary Professor at Makerere University, Kampala and has extensive experience in research, presenting at conferences and writing for publication. On her appointment to this new role, she says “It is an enormous honour to be given this opportunity to be the new ICPCN Chief Executive and I will do all within my power to build on the notable achievements of the organisation under Joan’s visionary leadership.”