Empowering young people to become health conscious adults

Over the past two years, the Trust has been looking at how we can improve the service we provide for young people. A key part of this has been the weekly ‘Big Room’ meetings, which generate ideas around education to staff, parents and patients about what is important to young people and how we can engage and help them to be healthy and health-literate adults. Dr Katie Malbon, general paediatric consultant, explains why young people have unique and specific needs, and how the Big Room is helping to shape the way we approach their care. 

Considering how we treat young people

At Imperial College Healthcare NHS Trust, young people are important to us: Every year we have over 100,000 interactions with young people aged 13 to 25; some are planned visits, but many are not. They are seen at all five of our hospital sites. When it comes to our interactions with young people, we do what we try to do with all patients in the Trust – care for them, get them better and send them out into the community in a healthier state than they were when they came to us.
But we know that young people – especially those with chronic illnesses like epilepsy and diabetes – don’t always get the best out of their experience with health services. If we don’t take care to engage with young people, we can ‘lose’ them as they transition from paediatric to adult services. Without robust transition services we potentially cause adults to disengage completely and ignore their health needs until they become a serious problem.

This is bad for patients, obviously, but it can also become a burden for the NHS because people who have chronic disease in young adulthood and who fall through the cracks can end up in A&E and being admitted to the ward for lengthy periods of time. The idea is that if you put in the work now you can keep people out of hospital later.

What we aim to do is give young people a seamless transition from paediatric to adult services by starting that process when they’re 13 and address that transition to adult care as they move through teenage years.

To do this, we need to make sure we’re taking every opportunity we have contact with young people and to give them a thorough and holistic understanding of health issues: not just their own condition, but also things like sexual and mental health, and to make sure they know what they should be eating. This will help and empower young people so they’re able to manage their own healthcare in adulthood.

At the moment, young people with chronic disease aren’t receiving what we’d describe as ‘developmentally appropriate’ care as they transition from paediatric to adult services. In our Trust, we haven’t had specific resource for this, and we don’t really have a culture that’s geared towards addressing these issues. There’s a lack of understanding that young people need a different type of healthcare.

What the NHS does to support young people through transition

Ready Steady Go is a programme to help young people gain the knowledge and skills to manage long term health conditions. The programme works through three colour-coded questionnaires – Ready (red), Steady (amber) and Go (green) – that young people fill in with their healthcare provider. These go through the key points of the patient’s understanding of their disease and are completed at various stages of their care.

The idea is to enable the young person to engage with a key worker. It gives them more of an understanding of their disease and also helps the keyworker to see where that person is in their understanding and when they’re ready to transition to adult services. Too often, young people are automatically moved to adult services at the age of 16. Really, they shouldn’t move until they are developmentally ‘ready’ – and this is one of the key things Ready Steady Go is designed to improve.

Where the Young People at Imperial Big Room initiative comes in

Young person's big room team

Over the past two years, I have been running the Young People at Imperial (YP@I) Big Room along with Paul Doyle, deputy director of transformation. It’s a weekly meeting where we brainstorm strategies to improve the services we provide for young people in the Trust.

We’ve looked at ways we can help make the Ready Steady Go documentation more engaging and interactive for young people.

We piloted a ‘transition clinic’ where we took three specialties: diabetes, rheumatology and allergy and selected patients who were known to those services. We invited them to an evening clinic and made it like a health fair. When the young people arrived, they were greeted by a peer – someone their own age from our youth forum. There were various stalls – for sexual health, mental health, education and careers, mindfulness, nutrition and sleep advice – so they could go around at their leisure and learn more about their health needs. We gave each young person a bingo card that they checked off when they had been to all of the stalls.

While they were there, they also met with a keyworker and went through the appropriate Ready Steady Go documentation. They also saw their paediatric consultant and someone from their adjacent adult services.

This was very successful, and we had really good patient feedback. The plan, eventually, is that we’d hold this kind of clinic every six weeks with different specialities represented. So, ideally, any young person would attend a transition clinic every six months from when they’re 13, up until when they transition to adult services.

Alongside this, we’re developing a whole strategy around transition. We’re working on better education for staff: finding opportunities to engage with them and help them to understand more about the needs of young people and what Ready Steady Go is all about.

Our aim is that, in five years’ time, we will be compliant with the Government’s ‘You’re Welcome’ criteria, which is a benchmark for transition.

We’re also the host of a Burdett Trust for Nursing national network transition nurse who is overseeing the transition standards in London. Nigel Mills came to us in May and is able to share what other Trusts are doing and help up move forward with our strategy.

Getting back on track

Our second pilot of the ‘transition clinic’ was interrupted by Covid, but we’re looking at ways to do this virtually while at the same time sending our clinical nurse specialists to training days for Ready Steady Go.

It’s never been more important to pay particular attention to our young people. Anecdotal stories, admissions to the wards and local surveys have demonstrated a catastrophic rise in poor mental health and increased risk-taking behaviour. We need to educate our staff, patients and their parents in issues specific to young people.

To kick this off, we now have a webpage which will act as a ‘hub’ of resources. Here you will find teaching resources, access to other appropriate agencies, Trust-wide initiatives and, importantly, up-to-date news about the YP@I Big Room. Please take a look.