Lizzie Chambers shares the moments and lessons that transformed a ‘wasteland’ into a growing global movement in children’s palliative care.
Lizzie Chambers leading figure in children’s palliative care, with her career spanning policy development, service innovation and international collaboration. Her early work with 'ACT' (the Association for Children with Life-threatening and Terminal Conditions), and her subsequent senior role in the formation and development of 'Together for Short Lives', positioned her at the forefront of national efforts to improve care for children with life-limiting and life-threatening conditions. Lizzie has also made significant contributions to global discourse through her long-standing involvement with the International Children’s Palliative Care Network (ICPCN) and the European Association for Palliative Care’s (EAPC) Children and Young People’s Reference Group. She is being interviewed at this time to mark her extensive 20-year engagement with ICPCN and to capture her reflections on the evolution, achievements and future priorities for the international children’s palliative care community.
Q: Lizzie, how did you first come into children’s palliative care?
A: I actually didn’t come from a clinical background at all. I studied languages at university and, like many people, wasn’t entirely sure what direction to take afterwards. I began working at ERIC, the Children's Bowel & Bladder Charity, and by complete chance our office shared a building with ACT – the Association for Children with life-threatening and Terminal Conditions*. When a job came up there, I applied almost on a whim. Two weeks after I joined, the Chief Executive left and suddenly I found myself in a very small team of three, gradually stepping into the leadership role.
But what truly rooted me in children’s palliative care was my very first day on the helpline. My first call was from a parent who described the landscape as “like a wasteland” – no information, no services, no guidance. At that time, there were only a handful of children’s hospices and very little NHS support. That call stayed with me. I realised how deeply unfair the situation was for families.
Q: What was ACT like in those early days, and how did the organisation evolve?
A: ACT was tiny but incredibly committed. We were constantly navigating financial ups and downs, but we had a fantastic membership of professionals who shaped much of our work. Our role was to bring together clinical expertise with the lived experience of families and provide the tools and information that simply didn’t exist.
We developed influential resources like the ‘Guide to Children’s Palliative Care’ and the early care pathways, which were groundbreaking at the time. They weren’t just UK tools; they were used internationally. We also created family-focused packs that complemented the professional tools, always trying to strengthen that partnership between families and clinicians.
We worked closely with the Royal College of Paediatrics and Child Health (RCPCH), thanks in large part to Professor Sir Alan Craft, who helped raise the profile of children’s palliative care nationally. That collaboration eventually contributed to the first-ever UK government review of children’s palliative care and a national strategy, remarkable progress for such a small charity.
Q: ACT eventually merged with Children’s Hospices UK to become Together for Short Lives. How did that come about?
A: By the late 2000s, both organisations recognised that the sector needed a unified national voice. We were already collaborating closely, and it became clear that merging would strengthen our collective influence, especially as central funding streams became more regionalised. After years of joint projects – including distributing major funding streams such as the Diana, Princess of Wales Memorial Fund and Big Lottery grants, the merger felt like a natural progression. Together for Short Lives launched in 2011, and it was an incredibly exciting period of growth and consolidation.
Q: How did policy and family support develop during your time there?
A: We always tried to bring together clinical expertise with the lived experience of families. Policy changes came from joining forces with disability organisations, children’s organisations and other charities. We developed guidance, tools and information for families, things that simply didn’t exist when we started. That combination of collaboration, evidence and family voice was what enabled the biggest shifts.
Q: You also helped shape international collaboration. What impact did that work have?
A: Helping to establish the International Children’s Palliative Care Network (ICPCN) opened my eyes to global inequality. It was humbling to see what colleagues in low-resource settings were managing with so little, often achieving extraordinary things. Much of children’s palliative care globally isn’t about technology or medicines, it’s about communication, presence, spirituality, and meeting basic needs such as food or emotional support.
Later, when we formed the European Association of Palliative Care (EAPC) Children and Young People’s Group, it ensured children’s palliative care had a consistent presence at congresses and within European discussions. One of our proudest outputs was the EAPC Charter for Children, which brought together values and principles we all shared. And throughout all of it, I learned that high-income countries do not have all the answers. Compassion, communication and human connection are universal.
Q: What do you see as the biggest challenges for the field now?
A: One persistent challenge is fear. among professionals of talking about a child’s death, fear among families of hearing it, and fear of getting it wrong. That fear exists everywhere.
There are also major gaps in training, inconsistent models of care, and difficulties accessing essential medicines in some countries. Although things have improved, many countries still don’t have children’s palliative care recognised in national policy.
Research is another critical need. A strong evidence base is still lacking in parts of the field. Research is improving, but we need more high-quality studies to drive policy change and secure sustainable funding. And above all, we must keep family voices at the centre. Their insights are what drive meaningful change.
Q: Are there particular stories or people who have influenced your work?
A: Many families have stayed with me, but Lucy Watts in particular had a profound impact and influence on me. I supported her from the time she was a teenager, and watched her grow into an extraordinary advocate, respected across the world. Her experiences later in life, especially when her end-of-life care didn’t meet her needs, affected me very deeply. They reminded me exactly why good palliative care for young people is so important, and why we must keep pushing for improvement. Further reading about the life and work of Lucy Watts can be found here.
Q: How can we ensure families’ voices remain central in our work?
A: We need to create real, practical ways for families to be heard, not only in surveys or case studies, but directly in discussions about policy, funding and service design. One parent said she wished for true partnership: professionals opening doors, creating platforms, and helping families tell their stories.
Pathways and frameworks help families advocate for themselves, but ultimately, it’s about ensuring they are treated as partners, not recipients. Their insights are what drive meaningful change. Charities and networks play an essential role in sharing stories widely, keeping families visible and their experiences understood.
Q: Finally, looking ahead, what is your hope for the next decade?
A: My hope is that the ICPCN global mapping of children’s palliative care will finally turn ‘green’; that every country will have integrated services, trained professionals and access to essential medicines. I hope digital tools, like the ones being developed in the PALLIAKID project, will be embedded in practice to make support accessible to more professionals and therefore families, wherever they live.
I’d also like to see stronger international research networks, greater collaboration, and improved training at all levels. We need champions everywhere, in every country. That’s how we build a future where children’s palliative care is recognised as essential, not optional.
* The Association for Children with life-threatening and Terminal conditions (ACT) was established 1988 by Professor David Baum (Institute of Child Health, Bristol, UK) and Sister Frances Dominica (founder of Helen House hospice for children, Oxford, UK).