Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services.

AIMS: The aims of the study were to: (1) describe the families experience of the services they receive; (2) describe the care packages associated with long-term ventilation; and (3) identify both problems and good practice.
SETTING: South West Region of England, 2001.
METHODS: A cross-sectional survey of parents whose children had been ventilated for longer than 3 months. Fifteen families were interviewed.
RESULTS: The following issues were identified: significant delays in hospital discharge [mean duration 513 days (range 14-1460 days)]; organizational fragmentation in commissioning services (12/15); problems with supply and maintenance of equipment (10/15); significant social morbidity-reduced family incomes, housing and social isolation (9/15); difficulties with respite care (5/15); loss of employment (9/15 mothers); and problems with access to education (12/15).
CONCLUSIONS: There were significant delays in discharge from hospital largely caused by an inability to organize and fund provision in community settings. A wide variation in provision, not related to needs, was observed between families. Effective early discharge from hospital was more likely to be achieved where community children's nursing teams were already in existence. Adequate respite care was rarely available for these families.