The National Children's Bureau and the Council for Disabled Children have published important information on what every child and young person should expect from health services in England, revealing their first-hand experiences of using the NHS and their views on how the NHS Constitution - where their rights and entitlements are set out - could be improved.

The reports build on earlier research1 and highlight how young patients, even those with extensive experience of using the NHS, are unaware of the Constitution, undermining their ability to demand the best possible care from health services.

Similarly, a survey2 of NHS staff highlighted a lack of clarity about what are the key sources of information setting out what is expected from staff working with children and young people.

The two new reports present interim findings of a three-year Department of Health-funded project and present to policy makers and professionals the scale of progress needed to deliver children and young people-friendly care:

  • 'Children & young people's health rights in England: Shared Messages' Reviews the NHS constitution and three other key documents on children and young people's health to establish the quality of care that children and young people in England should rightfully expect.
  • 'Children and Young People's Views on the NHS Constitution: Engaging Themes' Presents children and young people's experiences of using NHS services and their views on how the NHS Constitution can be improved.

As part of the project the National Children's Bureau and the Council for Disabled Children are also:

  • Developing an interactive website that will explain the rights to children and young people in an accessible and engaging way.
  • Creating and piloting a set of workshop resources that local organisations can use with children and young people in their area to introduce them to NHS Constitution and think about how the Rights can be used in their area.

A young person contributing to the report said:
'There should be more notices around, so we know our rights and what we can have, because I didn't know about some of the rights in the Constitution at all.'

Anna Feuchtwang, Chief Executive of the National Children's Bureau, said:
'While the NHS Constitution has a statutory footing, it is not always clear what the rights it sets out mean for children and it lacks detail on key issues, such as what young people can expect when making the transition to adult services. It is vital we address this and that other tools such as the You're Welcome quality criteria are updated to reflect children and young people's rights as service users.'

Christine Lenehan, Director of the Council for Disabled Children, said:
'Children and young people are key users of NHS services, but too often the NHS does not take account of their needs or circumstances. The findings of these reports reinforce the message of the Children and Young People Health Outcomes Forum Annual Report 2014/15 that there must be a culture change in the NHS to embed the rights of children and young people in all levels of the NHS.'

The reports are available to download from: www.ncb.org.uk/areas-of-activity/health-and-well-being/health-and-social-care-unit/resources-and-publications