Help for families of dying children

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The Independent Online
Families caring for terminally ill children are likely to be given special assistance by the NHS, with a nurse acting as a "keyworker" to help them. The pain of families caring for a child dying or suffering a long-term illness was the subject of a pounds 5m five-year study involving 40 pilot schemes.

Baroness Jay, the health minister, will today give backing to the recommendations of the report, "Evaluation of the Pilot Project Programme for Children with Life-Threatening Illnesses", which found that the best care can make a real difference to families coping with a seriously ill child. The main recommendations of the report are:

r A keyworker should be available to every family to advise, help and inform and co-ordinate work of local agencies;

r A senior health service manager should be attached to the family to organise and plan the delivery of services and support the keyworkers;

r A comprehensive local database should be established to track the needs of children with life-threatening illnesses.

The survey, from March 1992 to March 1997, looked into care of children suffering such illnesses as heart disease and cancer, at home and in special units, including hospices.