Last updated:
28th February 2024
For children with life-limiting conditions
Some children have conditions that mean they are unlikely to reach adulthood. Families need special help and support to come to terms with the situation, and to cope with the demands of caring for a very sick child.
Hospice care
Hospices have developed considerable expertise in working with children and their families, and offer a variety of support services including outreach and respite care.
Many families will also receive support from PINS or Community Nurses at some stage during their child’s treatment. Speak to your paediatrician for more information.
The following hospices provide short breaks and palliative care for children aged from birth to 18 years. Visit their websites to find out more:
Bereavement support services in hospitals
Hospitals have a bereavement support service for families who have lost a child whilst in hospital. The services provide support and guidance to the parents and carers. A healthcare professional at the hospital will be able to provide you with details about the service or see the hospital website for more information.
National bereavement helplines
If you are struggling with the loss of your child, there are people you can talk to. Use the resources below if you are in need of guidance, information, or someone to listen to you.
The Child Death Helpline
Tel: 0800 282 986
The Cruse Bereavement Care freephone helpline
Tel: 0808 808 1677
The following organisations provide support and advice for bereaved parents, siblings and families. Visit their websites for further information and contact details:
Browse our community directory for further counselling and bereavement services:
Other support
The Together for Short Lives website provides information for carers, and campaigns on behalf of families to obtain better provision and support.
The Young Lives Against Cancer website has advice and support for families caring for a child with cancer. Also provides support through a free helpline and email service.
Contact gives advice and support to families caring for children with disabilities, specific syndromes, and health conditions. It holds information on over 1,000 rare syndromes and disorders and can put families in touch with each other.
