Learning from young people

Quality Improvement – Learning from Young People

Adolescence is a difficult time in many people’s lives and is only made harder for young people with a chronic health condition. One particular challenge is the transition from children’s services, where the responsibility for patients’ care is often placed on their parents, to adult services – where individuals are expected to take full responsibility for their own health conditions. How do we help children make the leap to adulthood in healthcare? Paediatric teams have started schemes that stagger the gap – but sometimes these schemes don’t recognize that a 15 year-old and a 19 year-old have more in common with each other than they do with babies or elderly people.

At Connecting Care for Children we’re playing a role in a larger project to improve the experience for young people at St Mary’s Hospital – the Young People at Imperial (YPI) Big Room. This is a diverse group of people that meets every week and includes nurses, psychologists, patient advocates, doctors and many others. However, at our first meeting, several people pointed out that one group of people was obviously missing – young people themselves. How could we address a service that works for young people and solves problems they care about without having them there?

It was a therefore wonderful to be joined last week by a young woman who had grown up with severe allergy. She had recently experienced the journey from a clinic for children to an adult one and was keen to use what she’d learned to improve the process for others. In particular, she focussed on the importance of having one clinician present throughout the transition process to provide continuity as her parents were stepping back. She also spoke about her time at a weekend away for children with allergies (a workshop funded by …), and how youth workers there explored the emotional impact of her condition with her. Being able to share this experience with the other young people there had helped her realise she was not alone.

Sometimes in an organisation as large as St Mary’s, it can be easy to lose sight of the impact that we can have on the patients we care for. This story provided a powerful real-world example and really energised the room. Paul Doyle, one of the facilitators of the Big Room, said “A key aspect of the Young People’s Big Room, and improving the services we provide to our young people, is to make sure that they have a voice and that services are co-designed and co-produced. As such it was fantastic that we had a young woman in a recent Big Room, who was able to give us a different perspective and some insight on the services we currently provide and how we can improve them”.

We are excited to incorporate more young people’s experiences into our work. We are looking at how we can use existing contacts, focus groups and less traditional events to engage with young people so they can help us build us a service that works for them.