Jessie May, Bristol’s specialist children’s hospice‑at‑home charity, is using Children’s Hospice Week to challenge misconceptions about children’s palliative care and highlight why early, compassionate support is essential for families across the region.
With many children in Bristol living with life‑limiting or life‑threatening conditions, and around one in ten needing specialist palliative care at any given time*, the charity says understanding what palliative care really means has never been more important.
Jessie May nurse Ash, who supports families across Bristol and the South West, says the biggest barrier is often fear of the term itself.
“Palliative care has such an association with end of life, but it is so much more than that. I think of it as an umbrella term. Yes, end of life sits underneath it, but so do symptom management, emotional support, short breaks for parents and carers, signposting to other services and helping families navigate everything they are facing. There is a lot involved.”
Ash says families who access palliative care often describe it as overwhelmingly positive.
“I wish people knew more of the positive aspects of palliative care. Once families understand what it is really about, they see that it is all about improving quality of life for children and families. The families I have worked with always say they cannot imagine where they would be without it.”
One of those families is Freya’s.
Freya, who lives in Bristol, has Pyruvate Dehydrogenase Deficiency, a rare metabolic condition that affects how her cells produce energy. When she was diagnosed as a baby, her parents were told she would not survive childhood. Today, at 14, Freya continues to defy expectations – supported by Jessie May’s specialist hospice‑at‑home nurses.
Her mum, Kelly, says the word “palliative” once terrified her.
“Palliative care is a scary word as a family, especially as a mum and dad. You hear it and you think the worst. But once it is explained to you, you realise there is so much more to it. It becomes a safety net. It gives your child better quality of life while they are still here.”
Kelly says what made the biggest difference was how Jessie May nurses took time to understand her family and move at their pace.
“You never want to hear your child needs palliative care, but Jessie May are so good at being led by families. They get to know you so well. They know how to approach difficult conversations gently because every family is different. I struggled with it at the beginning, but they were so supportive.”
You can read Freya’s full story here: https://jessiemay.org.uk/freyas-story/
Jessie May CEO Jessica Patel said: “Children’s palliative care is about more than end of life; it’s about supporting families to live well together. At Jessie May, our nurses walk alongside families every day, bringing expert clinical care, emotional support, and the reassurance that they are never facing things alone. This Children’s Hospice Week, we want families to know that we are here, whenever they need us.”
To learn more about the difference children’s hospice‑at‑home care makes, and how you can support Jessie May this Children’s Hospice Week, visit: Jessie May Children’s Hospice Week 2026