Life as a young 'ventilator dependent' person

Increasing numbers of young people are living with the aid of long-term mechanical ventilation. Whilst there is evidence that the use of mechanical ventilation can bring about considerable health gain, there is growing concern that emotional deprivation, educational and social exclusion may result from their need for mechanical ventilation. The literature is dominated by medical perspectives with few (if any) accounts of the views and experiences of these young people and their families. Discussion in this article is drawn from a study exploring young 'ventilator dependent' peoples' views and experiences of the care and services they receive. When enabled to voice their opinions they described their lives as being characterised by discrimination, poorly organised and inadequate services, violation of their human rights, social exclusion and in many cases inadequate education. Government legislation and initiatives are not as yet making a significant difference to the lives of young 'ventilator dependent' people and their families. There appears to be little monitoring of outcome measures to determine if the services provided are effective and child-centred. From the findings of this study a number of questions are posed on behalf of the young people for commissioners and providers of services to address.