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End of Life Care in South Yorkshire
What is means
When a child has a life-limiting or terminal condition, end-of-life care is about making the most of the time remaining, supporting the child and the family in a compassionate, holistic way. It includes:
- Managing symptoms (pain, discomfort, feeding, breathing) and focusing on comfort.
- Helping the child and family express wishes and preferences (where to be cared for, how to spend time).
- Providing emotional, spiritual and practical support for the whole family, including siblings and carers.
- Ensuring the child dies with dignity, in a place and manner as close as possible to their wishes.
In the context of the region covered by South Yorkshire Integrated Care Board (SY ICB), this means services are available in hospices, in hospital, and at home.
Key local provider - Bluebell Wood Children's Hospice
Bluebell Wood recently announced that it has reinstated 24/7 end-of-life care, meaning families now have a real choice about whether their child spends their final days at home or in the hospice environment. The hospice offers both in-hospice care and specialist support in the home, enabling families to remain in familiar surroundings if that is preferred. Services are free to families who are referred.
What families should know
- Early referral helps: If your child has a life-limiting condition, ask your paediatric consultant, specialist nurse or GP about paediatric palliative and end-of-life planning. The earlier the conversation starts, the more options your family will have.
- Your voice matters: Where would your child prefer to be during their final days? What kinds of experiences and memory-making do you want to prioritise as a family? End-of-life care is about respecting your wishes.
- Support for the whole family: Siblings, parents, grandparents and carers are all offered emotional, spiritual and practical support. Bluebell Wood, for example, emphasises sibling workshops, family work and after-death care.
- Advance planning: Though it’s a difficult thing to think about, discussing wishes earlier (care preferences, where to die, what matters to you) can ease distress later on and ensure care aligns with family values.
Where care can take place
Home, hospice, or hospital - whichever setting offers the comfort and support best suited to your child and family.
Your local healthcare team and Bluebell Wood Children’s Hospice will work closely with you to support your wishes and help plan for care in your preferred setting. They can talk through the logistics and practicalities - such as the type of equipment or nursing support that may be needed at home, how care will be coordinated if you choose the hospice, or what hospital-based support might look like.
Please note that while not every option may always be possible due to individual medical needs or service availability, the team will do everything they can to honour your preferences and make sure your child and family receive compassionate, well-coordinated care wherever you choose.
