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Children’s hospice care is palliative care and practical, emotional and family support for children and young people with life-limiting or life-threatening conditions. It is not restricted to the final days of life and does not automatically mean that treatment has stopped. Support may begin when a condition is diagnosed or recognised, continue alongside treatment intended to cure it, and change as needs change. Local services may offer symptom support, short breaks, hospice-at-home care, care in a hospice, day services, therapies, advice, end-of-life care and bereavement support. The exact offer and eligibility are decided locally, so the practical next step is to contact a hospice care team with the child’s clinical team.
What children’s hospice care means
Children’s hospice services provide paediatric palliative care for a child or young person with a life-limiting or life-threatening condition, while supporting the people who care for them. “Palliative” describes an approach to quality of life: managing symptoms, helping with emotional and practical needs, and coordinating care. It does not mean that clinicians have decided a child is about to die.
NHS England describes palliative support as something that can start at diagnosis or recognition of a condition. It can be provided while a child is receiving active treatment, including treatment aimed at cure. Needs can fluctuate, so a family may use a service intensively for a period, need less help later, and return when circumstances change. End-of-life care is one part of this broader support. In NHS descriptions, it concerns people who are likely to be in the last 12 months of life; an individual prognosis must come from the child’s own clinical team.
Hospice care is a style of coordinated care rather than a particular building. Depending on local provision, support can be delivered at home, in a purpose-built children’s hospice, through day attendance, or in another care setting. A hospice may work alongside the child’s hospital specialists, GP, community nurses, therapists and education or social-care teams.
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What does a children’s hospice do?
Every provider has its own staffing, facilities, referral criteria and capacity. The following are examples of services described by NHS guidance, NICE and Together for Short Lives; no family should assume that every hospice offers every item.
Clinical and symptom support
A multidisciplinary team can help with pain and other symptoms, comfort, nursing, care planning and communication between services. NICE’s paediatric palliative-care guidance also recognises the need to support psychological, social and spiritual concerns, not only physical symptoms. The hospice does not replace the child’s consultant or emergency services; it adds specialist support and coordination.
Short breaks and respite
Some hospices provide short breaks, sometimes called respite, in the hospice, at home or through another arrangement. A break can give parents or other carers time away from caring while the child receives appropriate support. Availability, length, booking process and whether a child can stay overnight differ by provider. NHS guidance specifically advises families to ask their local hospice whether respite is offered.
Hospice-at-home and advice
Where available, hospice-at-home staff may visit the family home for planned care, practical help or support during a difficult period. Some services also provide telephone advice outside ordinary hours or an emergency contact. These arrangements are local; ask exactly when the line is staffed, what it can advise about and what to do if the child is acutely unwell.
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Therapies and practical information
Examples cited in family-facing guidance include specialist therapies, physiotherapy or occupational therapy, information about benefits and care, and help making plans. A hospice team may help a family understand equipment or coordinate appointments, but the specific professional available and the way support is funded vary.
End-of-life and bereavement support
When a child is approaching the end of life, the team may support comfort, planning, communication and care at home or in the hospice, according to the family’s wishes and local capability. Bereavement support can continue after a death. Some services include siblings, grandparents and other relatives; ask what is available to each person and for how long.
Does hospice care mean my child is dying?
No. Palliative care can accompany treatment intended to cure a condition, and access should not depend solely on a diagnosis or an overall prognosis. A child may be referred because symptoms, care needs or the effect on the family are substantial, even when clinicians are still pursuing active treatment.
End-of-life care is a specific component of palliative care, not a definition of all hospice work. Avoid drawing conclusions from a referral or from a change in services. Ask the child’s consultant or hospice clinician what the referral is intended to provide now, what might be available later and whom to contact if needs change.
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Where can care happen?
The right setting depends on the child’s clinical needs, the family’s preferences, travel and practical circumstances, and what the local service can safely provide. NHS guidance describes hospice care at home, in a care home or through day attendance; children’s hospice services may also offer planned or unplanned stays in a purpose-built hospice.
| Setting | What it may offer | Questions to check locally |
|---|---|---|
| Family home | Familiar surroundings, visits from hospice-at-home staff where available, and coordination with community services. | What hours are covered? Which tasks can staff undertake? What happens overnight or during an emergency? |
| Children’s hospice | Specialist nursing, therapies, short breaks, symptom support and end-of-life care in a dedicated setting, depending on capacity. | Are day visits, overnight stays or planned short breaks available? How is transport arranged? |
| Day service | Scheduled attendance for clinical, therapeutic, social or family support without an overnight stay. | Which days and ages are accepted? Can attendance change when needs fluctuate? |
| Other care setting | Hospice expertise coordinated with a hospital, care home or community team. | Who leads the plan, and how are records and out-of-hours contacts shared? |
There is no universally best setting. A plan can change over time, and NHS England emphasises coordination across settings and flexibility as needs change.
Can our family get a break from caring?
Possibly. Respite is common in descriptions of children’s hospice work, but it is not uniform. A provider may offer a regular short break, occasional overnight care, daytime sessions, hospice-at-home visits or another form of help. Capacity, staffing, age limits and clinical requirements affect what can be arranged.
When you call, ask whether respite is currently available, whether a nurse or other professional must assess the child first, how far ahead it must be booked, what happens if the child’s condition changes, and whether siblings can attend. Do not assume that a national description guarantees a place or a particular number of nights.
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Does the hospice support parents, siblings and relatives?
Yes, many children’s hospice services support the whole family, not only the child who has the diagnosis. Depending on the provider, this may include practical information, emotional support, therapies, sibling activities, support for grandparents or extended family, and bereavement care. Ask whether support is offered separately to siblings, whether a parent or carer can speak privately with a professional, and whether help continues after a bereavement.
Families have different views about staying at home, using a hospice or accepting outside help. A hospice team should explain options and limits without treating one choice as the right answer for everyone.
Independent reader supportYour contribution helps us test, update, and keep practical guides available for everyone.How do we ask for children’s hospice support?
The local hospice care team is the route to a specific answer about eligibility and services. You can phone the hospice directly and ask to speak with its care team. Together for Short Lives advises that the team can work with the child’s consultant to consider whether the service can help. NHS guidance also suggests asking a GP or district nurse and using Hospice UK’s hospice finder to identify local services.
- Identify the local service. Ask the child’s consultant, GP or district nurse which children’s hospice serves your area, or use a reputable hospice directory.
- Explain the current need. Describe symptoms, daily-care demands, recent changes, the effect on siblings or carers, and whether you are seeking advice, a short break, home visits, day support or end-of-life care.
- Ask about referral arrangements. Find out whether the hospice accepts self-referrals, what information it needs from the consultant or GP, and how long an assessment usually takes.
- Check practical criteria. Ask about diagnosis or needs-based criteria, age range, geographical catchment, transition arrangements for older teenagers, staffing capacity and waiting lists.
- Agree the next contact. Record the named coordinator, telephone number, out-of-hours instructions and what to do if the child’s needs change before the assessment.
There is no single UK-wide eligibility rule that guarantees a place. The provider assesses the child’s needs and the service’s ability to help. A referral conversation is not a commitment to use every service offered.
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Questions to take to the care team
- What support can you provide at home, at the hospice and through day services?
- Is respite or a short break available, and how is it requested and scheduled?
- Who should we call outside normal hours, and is there emergency or 24-hour advice?
- What information or reports are needed for referral and assessment?
- How will you coordinate with our child’s consultant, GP, community nurses and other therapists?
- Can siblings, grandparents and other carers receive support?
- What age criteria apply, and how will transition to adult services be handled?
- What services are available now, and which depend on staffing or a waiting list?
- How will we review the plan if symptoms or family circumstances change?
How should we weigh home-based care against hospice care?
Discuss the options with the child’s clinical and hospice teams rather than treating the choice as a permanent decision. Consider these factors together:
- Clinical needs: symptom complexity, nursing requirements, equipment and the need for observation or therapies.
- Family preferences: where the child feels comfortable, privacy, cultural or spiritual needs and the wishes of siblings.
- Practicalities: travel, housing, work, school, transport and who can be present.
- Respite and advice: whether the local provider can offer planned breaks, home visits or out-of-hours guidance.
- Continuity: how information is shared between hospice, hospital, community and primary-care teams.
- Flexibility: how quickly the plan can change if the child improves, deteriorates or develops new needs.
What does current funding mean for families in England?
A UK Parliament written answer dated 22 October 2025 says that approximately £26 million a year, adjusted for inflation, is allocated to children’s and young people’s hospices in England through local integrated care boards on behalf of NHS England. The stated allocation is to continue in each of the 2026/27, 2027/28 and 2028/29 financial years. The answer gives examples of possible uses, including respite, physiotherapy or occupational therapy, and 24/7 nursing support at end of life.
The same answer mentions a £100 million capital funding boost for eligible adult and children’s hospices in England. These are sector-level funding commitments, not a personal entitlement to a bed, respite place, home visit or particular therapy. They do not apply automatically across the UK, and local availability still needs to be checked with the provider.
When to seek immediate clinical help
A hospice information line is not a substitute for emergency medical care. If a child has a sudden, severe or life-threatening problem, follow the emergency plan supplied by the child’s clinicians and use emergency services when instructed. For non-urgent concerns, contact the child’s consultant, GP, community nurse or hospice team and explain what has changed. They can give advice appropriate to the child’s diagnosis and agreed care plan; a general article cannot assess symptoms or prognosis.
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The first call is usually about understanding needs and explaining what the local service can provide. Have the child’s diagnoses, current treatments, professional contacts, medication list and preferred telephone numbers available if possible. Tell the team what is hardest at home, what help you are requesting and whether there are urgent concerns. Ask when you will receive a decision or follow-up, and write down any safety-net instructions.
It is reasonable to ask for a clear explanation if the service cannot offer a requested arrangement. A hospice may suggest another community or hospital team, a different service, or a review later if needs change. Keep the contact details and update the team when circumstances alter.
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