Palliative care for children and young people is about promoting the best possible quality of life and care for those with a life-limiting or life-threatening condition, and their families.
It includes looking after the physical, emotional, social, educational and spiritual needs of children and their families, by managing symptoms, providing short breaks, end of life care and bereavement support.
It usually involves a team of different specialist staff providing different types of support to the whole family, including siblings and grandparents.
It can be given from birth if the child needs it, or as their condition worsens. The care you receive is based on the unique needs of your child and family.
Where is children's hospice care provided?
Children's palliative care can be provided in a hospice, a hospital, at home, or in other community settings.
There are hospices especially dedicated to children and young adults, while some hospices care for all ages.
While the hospice provides expert, tailored care, with access to specialist facilities, many families prefer to receive all or part of their care in their own homes. Community-based services, working alongside other health and care providers can support families at home.
What type of support is there?
Therapies are central to hospice care for children and young people.
They are about developing and improving a child's function but also about having fun and taking part in a range of age-appropriate experiences. People and services involved in your child's care can include:
- Bereavement counsellors can support a child before and after someone close to them dies, such as a sibling, giving them a chance to think and talk about their feelings.
- Children and family therapists support the children and family of someone with a terminal illness in their day-today life through to bereavement. They can offer counselling and practical help, and speak to schools and carers to help them understand what the family is experiencing.
- Children's palliative care doctors, also called paediatric palliative care doctors, are specialists who will work with other members of your child's care team and make decisions about treatment.
- Nurses can help with symptom management and end of life care. Nursing care can sometimes be provided at home by community children's nurses and other nurse specialists.
- Play specialists provide play activities for children and young people to help develop their physical, social and communication skills. They can also provide activities to help children and young people manage difficult experiences, like the death of a loved one, or if a family member is seriously ill.
- Youth workers support young people who are receiving palliative care
- Social workers can help families with practical issues, like speaking to schools, helping with paperwork, and sometimes counselling.
- Therapists provide physiotherapy, complementary therapies like baby massage and nutritional therapy, art and music therapy
As well as the support mentioned above, children's hospices can provide these services:
- Specialist support groups such as teenage cancer groups, and groups for siblings.
- Toy loan services allowing families to borrow games, toys and sensory equipment.
- Specialist short break care for families, also known as respite care.
- Transitioning into adult services, which support young people with activities either in the community or in the hospice as they move to adult palliative care. This is usually available for young people aged approximately between 13 and 25 years.
Is Hospice support needed for your Child?
Depending on the type of Batten disease, you and your child may benefit from hospice support when your child is very young, or when they develop symptoms that become more complex and the whole family feels the need for more structured holistic support. The BDFA Family Support and Advocacy team is on hand to talk with you about your child's Batten Journey and to help you understand more about palliative and end of life support.
How to make a referral to a Hospice?
Anyone can refer a child to a Children's Hospice whether they are a doctor, other health care professional or family member. The Hospice will ask that the child's parents or person with parental responsibility agree to the referral and that they are aware of the hospice's referral criteria.
Once a referral has been made, the hospice will need to obtain written consent from the parent/young person or person with parental responsibility. This enables them to request medical information from the child's Consultant and General Practitioner for use by the Hospices referrals panel.
Hospice referral panels are usually made up of the hospice medical officer, senior nurses and social work staff who decide whether or not a referral is accepted.
Useful link
Together for Short Lives - provides a wealth of information about palliative and end of life care and is an amazing resource for both families and professionals.