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.
Hospices have developed considerable expertise in working with children and their families, and are often able to 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.
The below hospices provide short breaks and palliative care for children aged from birth to 18 years. Visit their websites to find out more:
The together for short lives website provides information for carers, and campaigns on behalf of families to obtain better provision and support.
Contact a Family website 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.