As a young person, understanding your healthcare rights can be really confusing and navigating the health system can feel impossible. Even finding out that you have healthcare rights under the NHS Constitution can be a challenge!
Recognising this, NHS England approached NCB as experts in research, working with young people and delivering results, and asked for a simple and engaging way for young people and their parents to find out and explore their rights when using the NHS.
How did we do it?
We’ve been working to improve the lives of children and young people for over fifty years, and we know that to do that effectively requires listening to and directly involving them in the process.
To achieve a useful and engaging product, we began by building an evidence base. Experts from our Research Centre, along with our team of Young Researchers, travelled across the country to carry out consultations and focus groups with over 900 children, young people and parents. We focused on particular groups who face additional challenges when accessing health services. This included children and young people with learning disabilities, those with mental health issues and those with complex or multiple health needs.
Our findings, detailed in two reports, provide an in-depth view of children and young’s experience using NHS services. We also made recommendations for the core messages that children and young people should be receiving from health services.
Using what we learned through our research phase we moved on to develop an accessible and interactive web tool for children and young people. Taking the personal experiences of the young people we talked to and with advice from our user group, we created a website called Get Your Rights.
Featuring video accounts from young people and video advice from NHS staff the site focussed on setting out information that young people really want and need. It includes sections on how to speak out when decisions are being made about their health, how to take control of their as they move into adulthood and what they should expect in terms of being treated well. The website also contains a section on what steps and actions to take if they are unhappy about their care from the NHS.
Since its launch the website has been continuously popular and its materials have been distributed to every local Health Watch. Feedback from the children and young people using the site has shown they have a better understanding of their rights. They feel more confident accessing health services and more empowered to make decisions about their health care.
Amy Frounks (17), a Young CDC and NHS Youth Forum member who helped develop Get Your Rights, said: “I feel more confident in making decisions and getting involved in my own care and I think that others will feel the same. Being aware of what your rights are within the NHS is vital for everyone, including children and young people.”