Young people spoke and we listened: NCL Waiting Room hosts patient public involvement events

From January to March 2024, the NCL Waiting Room team ran five patient public involvement (PPI) events to gather feedback, insight, and ideas from young people about our digital platform. These events were run in collaboration with the following voluntary sector mental health organisations across the five NCL boroughs:

• The Hive, Camden
• Highbury Roundhouse Youth and Community Centre, Islington
• Barnet Youth Zone, Barnet
• Ponders End Youth Centre, Enfield
• Open Door, Haringey

Young people were invited to attend these events by their youth organisation or service, with no criteria for attendance. These informal events took place after school, lasting an hour and a half, and all participants were compensated for their time.

At these events, young people were provided a worksheet with a step-by-step guide to completing tasks on the NCL Waiting Room website. This included using existing features and testing the new functionality of making a personal account and creating a tailored plan.With support from the NCL Waiting Room team, participants completed the tasks and were invited to take note of their experience and write down ideas for improvements. Once all tasks were completed, the group came together and the NCL Waiting Room team facilitated an open group discussion on how the young people had found the tasks, listening to their honest feedback.

These discussions proved to be an incredibly rich source of feedback from participants, relating to what they enjoyed from the tasks, what they found challenging and what they would like to see in the future from the NCL Waiting Room platform.

Encouragingly, participants said they liked the new resource pages that provided an overview on specific topics (e.g. loss or grief, alcohol, creativity). They said they would like to see more pages like these to better understand different mental health difficulties or issues, how they present and when to seek help. They also commented on how easy the website was for them to navigate, allowing them to access information and resources they might not have otherwise found.

The best part was all the different NHS features that I didn’t know existed. There was information about services that I would never have otherwise heard about

The group discussed the new ‘My Plan’ section which includes a mood tracker and journal function. Participants especially liked the idea of the journal feature as a space to think to themselves and privately document their feelings. They made excellent suggestions for additions to this feature to make it more inclusive for all ages and abilities. One participant said they could see themselves using this feature to communicate with mental health professionals.

My therapist keeps changing so I keep having to tell my life story again and again which can be difficult. I could use the Waiting Room to write my story and share it with my therapist before a session

During the discussion, the participants spoke about accessibility features they would like to see implemented including the introduction a dark mode, screen reading, an inbuilt accessibility tool and definitions for acronyms used across the site (e.g. CAMHS). During the debate on introducing shareable features, some felt that it could help service users connect but others were concerned about the website becoming another form of social media. Similarly, the debate on introducing an AI chatbot invoked mixed reaction. Some felt it could help people navigate the website and find suitable information, but others felt the use of AI could be frustrating and inappropriate for vulnerable service users.

If you’re upset and you find out it’s a robot you’re talking to, you’d be really annoyed

Overall, these events were a great opportunity to hear directly from young people about their experience using the NCL Waiting Room platform. The insights from these events will inform design and delivery moving forward and we are excited to run more PPI events in the future to continue to involve young people in service development.