Support to Workers helping Families of Children with Terminal Illnesses

Project location: United Kingdom
Project start date: September 2002 - Project end date: September 2005
Project number: 2002-15
Beneficiary: Rainbow Trust


Final Report

April 2003

Ms Debbie Davies has been working as the family support worker caring for families who have a child with a life threatening or terminal illness living in South West Essex, North London and the Thames Estuary for over 9 months. Her caseload has rapidly increased to 24 families and the time spent with these families varies according to their need.

Debbie is currently supporting a family whose child was diagnosed with acute lymphoblastic leukaemia and is undergoing chemotherapy treatment. During visits to the family home, Debbie takes the sick child out to play in the park allowing the mother a few hours rest or to allow her the opportunity to catch up on some of the many tasks that has been left for another day. Sometimes, the child has wanted Debbie to stay and play for as long as possible and on other days, she has taken the sick child and the mother to hospital for a variety of checks and treatment. The emotional support during these visits has been invaluable particularly when the latest news of the child's condition is being discussed. On a practical basis, Debbie has provided the transport for the family to the specialist London hospital.

"Since joining Rainbow Trust I've felt privileged to have had the opportunity to meet and work alongside families whose lives have been so deeply affected by the onset of a life threatening illness in the lives of their children. There are times when I am struck by the daily hurdles that parents face in providing for the often overwhelming needs of their sick child whilst at the same time having to balance such needs with some sense of routine and normality in ongoing family life. There are so many occasions when the extra practical and emotional support has helped to keep that balance, whether by giving time to siblings who need that extra bit of attention, keeping the ill child occupied when they are in hospital, or just spending time with parents, making cups of tea and being a listening ear to unfolding stories of the struggles, hopes and fears they experience day by day," said Debbie Davies.


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