A major new national study examining whether teenagers with long-term health problems are receiving the best healthcare from the NHS has been launched.

The £2 million research grant from the National Institute for Health Research (NIHR), aims to improve the lives of young people with complex health needs – covering everything from chronic diseases such as diabetes or asthma, physical conditions such as cerebral palsy or muscular dystrophy, as well as problems which affect mental health, such as autism or depression.

Led by Northumbria Healthcare NHS Foundation Trust with researchers at Newcastle University and other UK institutions, the research programme which is known as Transition, will examine how treatment and care should be best managed for these teenagers, as they leave childhood and become more responsible for their own health from about the age of 16.

During the five year programme, researchers will work with 500 young people who use health services, from GP practices to hospitals, right across the country to find out what is important to them during this Transition period and what can help make the progression to adult care more effective and efficient.

Professor Allan Colver, Consultant Paediatrician at Northumbria Healthcare NHS Foundation Trust and Professor of Community Child Health at Newcastle University is leading the programme. He said: “We all know that the teenage years are full of changes and challenges and may be difficult for some. If, as a young person you also have to cope with health issues and take more responsibility for your own healthcare - that can be a very daunting prospect.

“For some young people, attending clinic appointments and dealing with doctors and therapists is something they’d just rather not do. There is good evidence that young people’s health and wellbeing may deteriorate when they progress to adult services.

“We have a lot to learn about how children’s services in the NHS might prepare young people earlier to make the transfer and how adult services can be better attuned to understanding young people to ensure they keep getting good and consistent healthcare.”

The period of growing up into adulthood is known as ‘Transition’. It covers all aspects of growing up including education, employment and personal relationships. Health is just one aspect of Transition and for a young person their health may not be the most important or as important as doctors think it should be. Health services must make sure they look after health issues in such a way that they integrate well with all the other parts of a young person’s life.

Professor Colver added: “Despite earlier small studies, this is the first major, national research programme to look into this crucial time period in depth.  Our aim is to make clear, evidenced recommendations to the NHS that will benefit young people across the UK and ensure they receive the best possible healthcare – starting right here in the North East.”

The Transition research has young people at its heart, taking in their views, examining what works for them and listening to what could be improved. A young people’s group called ‘UP’ forms part of the management team and will co-lead part of the research.  The study will develop best practice both for NHS Trusts delivering these services and to help the NHS better plan and develop such services in the future.

Jim Mackey, Chief Executive of Northumbria Healthcare NHS Foundation Trust said: “This is the first time we’ve been awarded a Programme Grant from the National Institute for Health Research and we‘re delighted to lead such an important piece of national work that will benefit so many teenagers across the country.

“We know there are significant areas for improvement when it comes to how the NHS looks after young people with long term health problems.  This research will be crucial in providing clear recommendation to all NHS organisations – commissioners, GPs, community teams and acute hospital providers – on exactly how we can together improve the experience and health outcomes for teenagers as they move from children’s to adult services.”

Funding will support research at: the lead Trust Northumbria Healthcare NHS Foundation Trust and other NHS Trusts in the north east and across the country; Newcastle University and other Universities as well as the Council for Disabled Children.

For more information or to get involved read more on the Transition website.

“Growing anxiety for me,” Rachel, 18

18-year-old Rachael Rich from Sunderland (pictured above) is about to start university where she will study Childhood and Youth Studies. She has cerebral palsy which means she needs a wheelchair and relies on family and friends to help with day to day activities.

Rachael said: "Moving from child to adult services has been and still is very difficult - not just for me but also for my parents.

"The people who look after my care have all changed and I haven't met them yet which means there is a growing anxiety for me and my parents regarding who is going to care for me, will they completely understand how my disability affects my day to day life? Even though they may have met people with cerebral palsy before, no one has the same difficulties and so, trying to explain to new people how my condition affects me can be hard.

“Last year I had an operation on my foot and for the first time I made the decision to go into an adult ward. They didn't have the right equipment for me so I ended up back on the children's ward which was much nicer as I know the people there and it was much more comfortable. However, if I needed an operation again in the future I would prefer the staff on the adult ward to be more aware of my needs.

“I am worried that I have been informed by my consultants that there will continue to be less input given by the NHS as I get further into adulthood - this makes me and my family anxious as I have had a lot of input from them since my diagnosis.

"Now I have to take responsibility for appointments and letters. Maybe people could look at different ways of contacting me - maybe by phone or text - that would be a really useful reminder as I have my phone with me all the time.”

“People did not give me the time to think,” Alex, 19

19-year-old Alex Bagher from South Shields has speech and language difficulties and is a member of ‘UP’, the young people’s group involved with the Transition research programme.  Alex is now studying Sport and Active Leisure at East Durham College where he won student of the year in 2010/11 and has a passion for football which he is keen to share with other children who have disabilities. 

“I want to set up a soccer school for kids like me who are able bodied but struggle with things like speech and language difficulties, autistic spectrum disorder and anger.  I could help those young people get advice about how to overcome their disabilities, achieve their goals and ambitions.”  

Without a visible disability, Alex remembers finding it upsetting when professionals did not have the patience to work with him. He said: “Health workers, teachers and other professionals need to understand more and receive training about working with people with communication needs. People wanted me to respond quicker than I could and did not give me the time to think.” 

Alex received NHS speech and language therapy services at school and recently received NHS occupational therapy care, aimed at improving his independent living skills in his own home. He said: “Without this support, I would not be as confident and mature as I am today. Transition is learning to live independently in all areas of life: health, leisure, everything.

“People with difficulties like me shouldn’t be ashamed of who they are, they should live a full life and be proud of who they are.  I hope I get the opportunity to share my experience and be a role model to those who are going through similar times.”

published on: 26 September 2012