NU-06: HOSPITAL BASED HOME OUTREACH PROGRAM FOR CHILDREN WITH BRAIN TUMORS

In 2015 we established a hospital based home outreach program with support from the Danielle fund. The program is run by a dedicated palliative care nurse and involves doctors and social workers. We identified suitable families based on the child's diagnosis, prognosis and families noted by the staff to be in need of support. We provided 24 hour telephone support and face to face meetings both in the hospital and at home. Patients with a brain tumor accounted for 50-75% of the children in the program. The nurse co-ordinator sat with the family 3-5 times per month in the hospital and half of all the home visits were to families caring for a child with a brain tumor. Home visits were made by the nurse with a social worker and if necessary a doctor. 75% of the home visits were nurse initiated whereas a quarter were requested by the family. The common problems that arose included pain relief, daily routine, coping with siblings of the sick child, options for motor rehabilitation and schooling at home, feeding whether orally or enteral, review of medications and dosing and management of respiratory difficulties and excess salivation. We maintained written contact with the community services regarding 4 main issues: medications at home, physiotherapy, nutrition including liquid feeds and appropriate equipment and pain management including home intravenous opiates. In conclusion, an outreach program is vital to the continuation of care for children with a brain tumor at all stages of their illness.