More than 100,000 children and young people across the UK are living with serious illness or exceptional health needs. The number who are fully dependent on technologies such as long-term ventilation continues to grow and their needs are becoming increasingly complex and time-intensive.

In spite of mounting evidence that they fare better at home, many spend months, even years, in hospital, simply because there isn’t adequate support for them to leave. Once home, it is important not to underestimate the impact on the whole family in supporting these children with high-level medical needs, many of who are at constant risk of serious, even life-threatening complications. Managing the profusion of medications and complicated medical procedures, normally the province of healthcare professionals, can place an enormous strain on families.