The views and experiences of young people who are dependent on assisted ventilation to sustain their breathing, and the views of their families, give important messages for those involved in developing multi-agency working practices.
The book is divided into sections which follow the young person's care journey from hospital to discharge, to care at home and towards independence, looking at the health, social care and educational needs expressed by children and parents at each stage in the journey.
The author takes a holistic approach to young people's care by including health, social and educational needs within its review. She pays particular attention to the whole person by not only referring to their medical condition and health needs but also hobbies, friends, likes, dislikes and aspirations.
In this way it becomes a meaningful account of the impact which this condition has on each individual and the way in which they and their families deal with it.
It also paints an alarming picture of the struggles which many have in obtaining the care they need.
The book is particularly aimed at young people and their families who use assisted ventilation but would also have relevance to young people who are similarly placed in a dependent state. It makes explicit the feelings of frustration and isolation often experienced but suggests constructive ways in which these might be addressed.
It is also aimed at commissioners and providers of services.
Recommendations are clearly set out with questions posed for commissioners of services for young people who are ventilator-dependent.
The author has given these authority by setting them alongside the United Nations convention on the rights of the child (1989) and demonstrating how current practice falls short of these.
The report makes a timely case for the coordination of care between health, social care and education at a time when multi-agency strategies are being developed. It emphasises the importance of building services around the individual and their family and not the other way round.
As one young person says: 'It's nice if I can say what I want rather than have people say this is what you want. It is just depriving people of free speech.'
Jane Bradburn, independent research and development consultant in user involvement.
Project manager of Voices in Action at the College of Health and Cancerlink's Cancer Voices Project.