The Young People's working group - UP

What’s UP?

UP, short for United Progression, is a young people’s group. As the Transition Programme is about improving young people's experiences of transition the programme thought it was vital that young people had a say in how the Programme was run.  This is where UP come in! They offered the programme help and advice and also completed various tasks for the Programme. Their help has been invaluable to the Programme.

While some young people were apprehensive about joining the group to begin with due to past experiences, the young people who joined UP have found it a rewarding experience. Some of the positives they describe include:

Skill Development:

“Seeing my brother developing over time: This isn’t the same kid, when he was speaking at the launch. I didn’t think that (public speaking) would ever happen.”

“The launch event. That really stands out, that day, how UP members coped with it.”

Self-Awareness & Knowledge:

“amazed to have done what I’ve done. Quite a transformation to be honest.”

"Gained a broader insight into people in the group and their conditions.”


“UP’s been massive in my life. I was short of confidence and was not certain I was going to see it through.”

“Confidence is a huge issue for young people with ASD. Being in the UP group has helped.”

 “We all say it has given us more confidence”


“My life’s got better because of UP (for example) I’ve got some voluntary work now.”

“It’s no dark or bright side—it’s how it affects you.”

“…….leading to doing other things; being involved in other projects; getting voluntary work.”


The research team have really enjoyed working with the UP group as well:

“I think they’re an important first audience for some of the findings to see whether we are able to explain things in an interesting way… to ensure that any written dissemination that we send to young people is comprehensible but also interesting.”

“Well I think we all feel that we’ve got a much more interesting story to tell, when UP contribute. The angle that the young people bring is something that makes the thing much more real to other people and much more kind of interesting.”

“I think quite a number of the adult researchers have been impressed by the UP young people; by the kind of skills they have; the interest they have; the ideas they have. It has slightly surprised some of them I think, so that’s had an effect on the kind of impressions of young people.”

“I think my experience to date is that you never know what UP are going to comment on and they bring a completely different perspective.”


What we’ve been UP to….

The UP group has undertaken a series of tasks supporting the overall Programme.  These have included:

  • Interviewing and training research associates for the Transition Programme
  • Presenting at the launch of the Programme
  • Designing recruitment posters and certificates used in the longitudinal study
  • Assisting with development of the Q-Sort study
  • Attending External Advisory Board meetings to give the young person’s perspective
  • Peer Support Workers co-authored an academic paper on young people’s involvement

The UP group also created the video 'Transitions Got Talent', which takes a fun look at how health professionals interact with and treat young people.  In the film (which stars some members of UP), a judging panel is faced with a variety of behaviours and attitudes from health workers.  In true talent-show style, the panel gives some pretty honest feedback!

In real life, the values and behaviours of health professionals can have a big impact on a young person's experience of accessing health services. So take a look at how professionals can get it right (or very wrong...!).


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This film was first shown at a Health Foundation seminar on Developmentally Appropriate Healthcare (i.e. healthcare which is young-person-centred, flexible, and responsive to the changing developmental needs of young people). Following this seminar, the National Institute for Health Research mentioned the film on its website, as part of an article showcasing UP's contribution to health research. Their article can be found here.

The film was funded by Royal College of Paediatrics and Child Health


Links with Local and National Organisations

  • The group were invited to a Takeover Day at the Department of Health, London, which allowed young people’s voices to be heard. The group showcased Transition and UP’s research and also learned about other young people’s involvement groups.
  • Contributed to the Royal College of Physicians Talking Heads video which is now used as part of their e-learning tool for clinicians. (Link)
  • Provided case study material for the National Network for Adolescent Rheumatology report into the involvement of young people in health-related research.
  • Involvement with the Council for Disabled Children’s North East Event for Developmentally Appropriate Healthcare.


If you are interested in the role of young people in research, you might want to check out the

video below: