The Sarah Fox Children’s Hospital Paediatric Palliative Care Unit
No child should have to face the prospect of dying. Sadly however this is a reality for some families and cannot be ignored. More than 80,000 children and infants in the Western Cape alone have life-limiting or life-threatening illnesses which require long term or palliative care. Doctors and nurses are not given the appropriate training in ‘hospice’ care and pain management for children requiring palliative care. As a result chronically and terminally ill children and their families often do not receive the support and sufficient pain medication they need. Because of this they often spend more time than is necessary confined to a hospital bed rather than being with their families at home doing the things they love, free from pain and anxiety. Inappropriate support during this time causes tremendous suffering and distress to children and their families.
Children with life-limiting and life-threating illnesses need to be medically stabilised at specialist hospitals like the Red Cross War Memorial Children’s Hospital and Sarah Fox Convalescent Children’s Hospital. Families often cannot cope at home with the level of care required and this leads to re-admissions and prolonged hospital stays.
There exists a dire need for step-down inpatient care at a community level to support and prepare families to care for their children and the Sarah Fox Convalescent Children’s Hospital was well positioned to develop this inpatient hospice unit for children. The unit provides a multidisciplinary paediatric pain and palliative care service for children requiring ongoing treatment upon discharge from a specialised hospital. Their aim to promote ‘care by family’ during their stay at Sarah Fox has ultimately led to appropriate care in the home environment. Families may choose to have their children re-admitted to the Sarah Fox Paediatric Palliative Care Unit if symptoms or situations arise with which they cannot cope or if their children need terminal care that cannot be provided at home.
THANK YOU FOR YOUR HELP
The Children’s Hospital Trust committed to raising R2.8m for this two year programme. By supporting the Sarah Fox Convalescent Children’s Hospital to develop a Paediatric Palliative Care Unit, you gave children their dignity, relieved their suffering, and assisted families to care for their children at a child hospice unit or at home during this very emotional and difficult period.
To palliate is to relieve or soothe the symptoms of a disease without curing. A way of making the days count rather than counting the days.
For more information on this project please contact Sarah Fox on 021 637 1302