We were proud to see Jessie May featured on BBC Points West this week in a powerful report highlighting the national funding pressures facing children’s hospice and hospice-at-home services. The piece explored rising demand, increasing complexity of care, and the growing gap between the true cost of specialist support and current government funding.
The segment featured one of the families we support – Alex, who lives with cystic hygroma, alongside his mum Emily and big brother Roman. We are incredibly grateful to them for sharing their story so openly.
Emily, who lives in Midsomer Norton, Somerset, is supported by Jessie May nurses to care for her eight-year-old son Alex. Alex was born with cystic hygroma – a cluster of fluid-filled sacs that restrict his breathing – and relies on a tracheostomy. As the tube can sometimes block, he needs constant monitoring to ensure he can breathe safely.
Emily explained how vital the nursing support is for her whole family:
“If they didn’t come, I wouldn’t be able to spend time with Roman and catch up with him. Alex also wouldn’t be able to experience some things – the nurses take him to the park and do all sorts of things with him. It’s so important for families.”
Like many organisations delivering hospice-at-home services, Jessie May is operating in a challenging environment. Demand for children’s palliative care continues to grow, while the cost of delivering specialist nursing support rises year on year. Without increased investment, the sector as a whole will struggle to meet the level of need in the years ahead.
In 2024, the government announced what it described as “the biggest investment in hospices in a generation” – £100 million to improve hospice facilities – and said it is working towards a new hospice funding model.* However, as Tiggy explained in the interview:
“Things like national insurance contributions, wage rises and utilities are all increasing, but our statutory funding isn’t.”
While we are grateful for the government’s support, this funding does not increase what Jessie May receives. With rising costs across staffing, equipment, and day-to-day running expenses, the current statutory funding still does not fully cover the cost of delivering our specialist nursing care. This means we continue to rely on fundraising and donations to fill the shortfall, ensuring that families can access the vital support they need without any reduction in services.
That’s why national coverage like this BBC Points West report is so important. By highlighting the realities families and care providers face, it helps raise awareness of the ongoing challenges and builds momentum for long-term, meaningful change.
We are incredibly grateful to Tiggy for her ongoing advocacy at a national level, working alongside partners across the sector to push for fair, sustainable funding for children’s palliative care. Her voice, alongside those of families and frontline nurses, is crucial in helping policymakers understand both the challenges and the urgent need for secure, long-term investment.
While the national picture is difficult, supporting children and their families remains at the heart of everything we do. We are committed to providing compassionate, specialist nursing care in the place children feel safest – their own homes – and will continue to speak up for the funding and recognition children’s palliative care urgently needs.
To Alex, Emily and Roman, and to all the families who share their stories to help raise awareness – thank you. Your voices help drive the change we all want to see.
Read more about this on the BBC website HERE.
