Reflections on three years with Jessie May and why change can’t wait
As I prepare to say goodbye after three extraordinary years at Jessie May, I’ve been reflecting on what this charity stands for, and why the change our sector needs can’t come soon enough.
When I joined Jessie May, I already knew it was a special organisation. What I didn’t yet understand was just how profound an impact community-based children’s hospice care can have on a family’s life. Jessie May is the only children’s hospice in England that delivers its entire service in the community. For 30 years, our nurses have stepped into homes, not as visitors, but as trusted partners, offering care where children feel safest and where families feel most supported.
Families often tell us that Jessie May isn’t simply a service, it’s a lifeline. It brings dignity, choice, and a sense of control during the most uncertain and painful moments a family can experience. And yet, despite the value families place on this support, the system itself continues to make delivering it incredibly difficult.
Right now, only 18% of our costs are covered through statutory funding. The other 82% is raised through charitable fundraising every single year. With rising costs and increasing need, this model simply isn’t sustainable, for us or for children’s hospices across the country. Some organisations fare better, others worse, but all face the same reality, children’s palliative and end-of-life care should never depend on luck, geography, or whether a charity had a “good fundraising year.”
This week, I travelled to Westminster with Laura McArthur, mum to Archie, a Jessie May cared-for child, and a former Parent Trustee. Laura spoke powerfully at the Together for Short Lives APPG about what it truly means to raise a child with complex health needs. Her words captured what statistics never can, the emotional weight, the practical challenges, and the life-changing difference the right support can make.
I followed by speaking about the inequity families face across the country. If we truly want families to have real choice in how their child is cared for, we need:
- Secure, multi-year NHS funding for children’s hospice care, including hospice-at-home services.
- Commissioning models that recognise and value every kind of hospice provision, from bed-based care to community-based support.
- Consistent partnership working across ICBs, so no child’s options are dictated by their postcode.
Children who need palliative care cannot wait. Their lives are short. The impact of delays and uncertainty is now. And if we want a system that genuinely works for families, we must design it with them, not for them. Hospices, commissioners, providers, and policymakers need to collaborate, not compete. Only then will every family, wherever they live, have access to the right care, in the right place, at the right time.
As I leave Jessie May, what stays with me most are the conversations I’ve had with parents. One of the very first was with a bereaved parent who told me how Jessie May helped them hold onto a sense of “normality” during the most difficult time in their lives. Friday visits from the nursing team meant they could run errands and prepare for the weekend, freeing up precious time to make memories that would have to last a lifetime. It’s moments like these that show exactly why this work matters.
Working for Jessie May has been one of the greatest privileges of my career. The dedication of our nurses, staff, volunteers, and Trustees is humbling. Every day they make a difference, quietly, compassionately, and without hesitation.
Although I’m moving on to a national palliative care charity, my commitment remains unchanged. I will continue to push for the change families and individuals need and deserve. Because no child’s care, or a parent’s peace of mind, should ever depend on the strength of a fundraising year.
Thank you to everyone who has supported Jessie May, championed our work, and trusted us with your family’s care. It has been an honour.
