As Philanthropy Manager here at Together for Short Lives, I wouldn’t exactly call myself an “outsider”. I understand the challenges the system faces. I know the deep joy that good palliative care can bring to those on that most difficult of journeys. I am passionate about making sure every seriously ill child and their family gets the best care, when and where they need it.
Yet attending Together for Short Lives 2025 Built to Last Conference was an incredibly educational and emotional experience. For two days I was surrounded by professionals, providers and parents with lived experience of this unique sector. We had created this rare and powerful opportunity for experts from across the country to come together, and I realised – here in this room, I am the outsider. And what a privilege it was be one – witnessing the best and brightest problem solve together by sharing best practices, projects and research to improve care.
The unity of everyone was incredible! What a great national team to be part of.
Built to Last Conference attendee
It takes a village, and some serious resilience
There was no mistaking it; everyone in the room knew the exact challenges that the children’s palliative care system is facing, some very intimately. A flawed funding system, limited budgets, staffing shortages and a gap between policy and reality have created a postcode lottery, leaving families without support, despite the best efforts from a whole host of experts – GPs, consultants, nurses, researchers, hospice teams, parents and many, many more.
For community nurses, that lottery looks like a family caring a seriously ill child at home, having no one to turn to at weekends or during out-of-office hours.
For pharmacists – as spelt out by Dr Sarah Mitchell, National Clinical Director for Palliative Care and a GP in Sheffield – it sees them and families scrambling to track down specific medications, so families have them out of hours.
For Children’s Commissioner for England Dame Rachel de Souza, who opened the conference, that gap has resulted in her meeting children who have spent their whole life in hospital, because the resources in the care system to care for them at home, where they’d be most comfortable, simply aren’t there.
It takes a deep level of resilience to deliver care on the front line. I felt a deep sense of awe and respect for those delivering care day in and day out.
Sometimes it’s the small things that have the biggest impact
There were two presentations which have stayed with me for simple but profound reasons.
Dr Christine Mott, Medical Director at Acorns Hospice, shared how they use dry ice gel packs as mobile cold sheets to give bereaved parents more time together with their baby – a crucial part of developing their neonatal services.
For parent speaker Emily Tammam, it was the ripples created by her daughter Neve through her short life which continue to touch those who met and cared for her. Neve was diagnosed with an aggressive brain tumour at seven and died nearly three years later in 2023. From talking about chocolate Freddo incentives to help Neve navigate increasingly complex care and medication, to articulating that she had ‘won’ the postcode lottery with the support they had in the hospital, in the hospice, and at home, her talk was full of warmth, grief, and humour.
I would also like to say how privileged I felt to be able to listen to Neve's story. It was both moving and heartbreaking, and most of all, real. This is invaluable in terms of shaping our care for children and does more than any statistic. This is real life, and the children and families in our care are real. I will think of Neve every time I see a Freddo!
Conference attendee
Hope on the horizon
I know the challenges I’ve described seem bleak, but there are clear solutions and the incredible willpower of a whole community of experts to make those happen. I’ve no doubt that the conference has sparked conversations and connections that will stand the test of time.
So, while I may not have been a palliative care professional in that room, I didn’t walk away feeling like an outsider. I left feeling energised, inspired and part of that community of passionate people fighting for a better future for children’s palliative care. A future where every child and their family get the high-quality care, when and where they need it. A future where children’s palliative care is Built to Last.
Excellent conference - very inspiring and enhanced my passion to make national changes/improvements for children's palliative care, not just locally.
Conference attendee
Fiona is the Philanthropy Manager at Together for Short Lives. If you’d like to discuss working together to transform children’s palliative care, please do get in touch – she’d love to hear from you.
