This year on the 13th October 2023, the International Children’s Palliative Care Network (ICPCN) marks 10 years since the #HatsOn4CPC campaign was launched. Today people around the world are wearing a hat and making a donation of £10 to honour all children with life-limiting conditions who live in the shadow of illness. This is a day when we celebrate these children, their families and those who care for them and advocate for better and equal access to CPC services for all who need them, wherever they live.
According to ICPCN’s research, it is estimated that more than 21 million children need palliative care globally and only 5% of the children who need this care can access it. Now in its 10th year, the annual campaign is a day to unite, raise our voices and use our resources to close the gap for the 95% who are suffering and in need. ICPCN has worked with many organisations in low and middle-income countries (LMICs) where this problem is most acute and where our support is most needed to develop a better standard of palliative care for children and their families. Recently the COVID-19 pandemic and the conflicts in the world have only exacerbated the problem.
Professor Julia Downing, CEO of ICPCN comments: “We’re delighted that people around the world are wearing a hat to raise awareness of the need to improve palliative care for children. Today we mark 10 years and encourage our supporters to make a donation of £10 to help us to reach more nurses and healthcare workers in low-income countries through our e-learning and online courses.”
Steph Nimmo, Mother of Daisy Rose will be wearing a hat for her daughter Daisy who arrived into the world on the 22nd December 2004. “Daisy was born by C-section after a difficult pregnancy and it was clear that something was not right. And so our story began, and the life I once knew was replaced by a very different life. We were told that Daisy might not see her first birthday. But she did. Every year she defied the odds and we treasured every moment and every year she was with us.
There’s such a mixture of bittersweet sadness when I think that Daisy would be 18 now. I would never ever allow myself to imagine what life would have been like if she hadn’t been born with Costello Syndrome. She wouldn’t have been the amazing Daisy that we knew, she’d be a different version, but not the one that I’d grown to love.
This year, I’m reflecting that it’s another year gone by where I haven’t held Daisy, ruffled her fuzzy hair, or heard her call out for me. It’s so hard, not a single day goes by when I don’t think of her. I miss her so much, it’s a scar that I will carry with me to my grave.”
Steph continues to campaign for and write about her experiences and how to make life better for parents caring for a life-limited child. Her third book ‘Anything For My Child’ is going to be published on 21st November. It shares stories from families and clinicians giving insight into the realities of life on both sides of the hospital bed. Visit https://lnkd.in/eAy-rV7z to pre-order a copy.
The second Friday in October, which this year falls on Friday 13th October 2023, is a day for raising international awareness of the need for children’s palliative care and the work of children’s palliative care (CPC) services worldwide. Now in its 10th year, the annual campaign is known as HATS ON for Children’s Palliative Care with the hashtag #hatson4cpc.Who is the International Children’s Palliative Care Network?
The International Children’s Palliative Care Network (ICPCN) is a global network of organisations and individuals and the only international charity dedicated to securing the right of at least 21 million children worldwide living with incurable, life-shortening and life-threatening conditions to receive palliative care. Please find out more about ICPCN on our website https://icpcn.org/about-icpcn/Why do we need the Hats on for CPC campaign? #HatsOn4CPC
There are still far too many children that are unable to access this essential service, especially in low and middle-income countries (LMICs). We cannot achieve universal health coverage without palliative care, which is also a key component of the right to health and the United Nations Sustainable Development Goal for good health and well-being.
How to make a donation to ICPCN?
Please visit our website: https://icpcn.org/donate/ to make a donation via PayPal, Global Giving, Enthuse or simply transfer your donation using BACS / bank transfer. Alternatively, please do get in touch via email: firstname.lastname@example.org for any queries on how you can support ICPCN anywhere around the world. We’d be delighted to hear from you.
Children’s palliative care
Palliative care for children is the coordinated response to the medical, social, emotional and spiritual suffering of children with life-limiting conditions and their families. Those eligible for this care include children with cancers and other non-communicable illnesses that are life-threatening, children living with HIV and AIDS, children with certain congenital and genetic conditions and children living with rare diseases for which there may be no name and no known cure.
Care can and should be provided from the time of diagnosis, or soon after, as it addresses not only physical distress but also emotional and social issues that often accompany such a diagnosis. It aims to provide the child and family with a support system, allowing them the best possible quality of life for as long as possible.