On 18 November 2025, Jessie May joined Together for Short Lives and children’s hospices from across the UK at Westminster for the All‑Party Parliamentary Group (APPG) for Children Who Need Palliative Care lobby day. The event brought MPs, peers, and sector leaders together to hear directly from families and professionals about the urgent need for sustainable, high‑quality children’s palliative care.
One of the most powerful moments of the day came when Laura McArthur, spoke to MPs and peers about her family’s life caring for her son, Archie. Laura shared how Jessie May’s hospice‑at‑home service has been a lifeline for her family, providing not only expert nursing care but also emotional support and reassurance.
Laura spoke powerfully 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.
To parliamentarians, she said:
“Our son Archie is eight years old. He was born at 23 weeks and suffered a profound brain injury. He requires 24-hour supervised care to ensure his safety… We are fortunate to have some waking care, but this is not uniform across the UK. If we lived elsewhere in the country, we could conceivably have more care nights — or indeed less. The postcode lottery is real, and it needs to be addressed to make care fairer across the country.”
She went on to share the difference Jessie May has made to their lives:
“Archie cannot walk or talk and communication is very challenging so having trusted people around for him is a necessity. This is where The Jessie May comes in. They have been with us since Archie was 6 months old. They visit us at home and look after Archie so that we can leave the house and have a much-needed break – not something which happens often. They have been a godsend and are like extended family to us. They are often referred to as ‘Angels’ by families who use their services. Without them I would not have been able to do normal activities such as take Archie swimming, or even do the weekly shop. Have you ever tried pushing a wheelchair and a trolley at the same time? It’s not easy.”
Drawing on her own experience caring for Archie, Laura reminded parliamentarians why equitable palliative care is essential:
“Palliative care is so much more than just care for the person who is unwell, it’s taking care of the whole family with compassion and respect. The fact that this provision is not available in equal measure across the UK is unacceptable. Every family in our situation should have access to it. I also believe this should also be extended to families having a choice of where their child dies. Currently children do not have the same choice as adults, to die at home. With more funding and palliative care staff this could become a reality.”
Laura’s testimony reminded everyone in the room that behind every policy decision are real families whose lives are shaped by the care they receive. Her words highlighted why sustainable funding and fair access to children’s palliative care is not just a political issue, but a human one.
Following Laura’s contribution, Daniel Cheesman, CEO of Jessie May, spoke about the injustice families face due to inequitable and unsustainable funding. He emphasised that genuine choice in care is only possible if every family has access to properly funded services, regardless of where they live.
Together, Laura and Daniel’s voices carried a clear message: if we want every child and family to have genuine choice, we urgently need:
- Secure, long‑term NHS funding for children’s hospice care, including hospice‑at‑home.
- Commissioning models that recognise and value every kind of hospice provision.
- Consistent partnership across Integrated Care Boards (ICBs), so no child’s options depend on their postcode.
Daniel explains, “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.”
Looking Ahead
We are grateful to Care Minister Stephen Kinnock MP and the Department of Health and Social Care for listening, and for recognising the urgent need to tackle variation in children’s palliative care. We look forward to the government’s forthcoming announcement and to working closely with the APPG to ensure every seriously ill child can access the high‑quality, sustainable palliative care they need, when and where they need it.
Laura’s words captured the heart of the day: Jessie May’s support is not just about care, it’s about giving families the strength to keep going and the chance to make memories that last a lifetime.
