• complex health needs
• personal health budgets
• integrated care

The fragmentation of health services for children has been recognised as unsatisfactory for at least 15 years

This is the dismaying opening line to an article published as long ago as 1992.1 Difficulties with integration of care have been recognised for over 40 years. Prior to this, many disabled children were cared for in institutions, so difficulties likely date back to the time when there was a move away from institutional care and children started to access education, health and social care from home.

The article goes on to describe a number of examples that essentially remain unchanged today, including problems with arranging respite, supply of specialist seating for school and transition to adult services, and states:

There are frequent complaints of buck passing, and inaccessibility of the service from general practice, social services and education, and parents are completely bewildered by the divisions and splits which prevent their children receiving an effective service

This remains the reality for most families with disabled children and accurately describes my own experience of dealing with services since my son was born with complex disabilities 19 years ago. If I have failed to get the system to work as a paediatric consultant, then just how difficult must it be for other people?

A 2017 survey of 2600 parents, by the Disabled Children’s Partnership, revealed that 97% of parents with a disabled child think the public do not understand the challenges they face, 69% of families with disabled children never receive any support, and 90% of families say they have to fight to get the services their disabled child needs.2

Over the years, there have been various attempts to address these issues, with initiatives such as the National Service Framework for Children, Young People and Maternity Services,3 Children’s Trusts,4 and …