A major study is to examine whether teenagers with long-term health problems get the best care from the NHS in England and Wales.  The £2m study, led by Northumberland Healthcare Trust and Newcastle University, will work with 500 young people over five years.  It follows concerns youngsters with complex health needs are being failed by the NHS as they become adults.  The team will make recommendations to NHS organisations.  The study will focus on young people with chronic diseases such as diabetes or asthma, physical conditions like cerebral palsy and issues such as autism and depression.

Health ‘may deteriorate’

Prof Allan Colver, consultant paediatrician at Northumbria Healthcare Trust and professor of community child health at Newcastle University, said young people deserved better from the NHS.

“There is good evidence that young people’s health and wellbeing may deteriorate when they progress to adult services,” he said.

“We have a lot to learn about how adult services can be better attuned to understanding young people and ensure they keep getting good and consistent health care.”

Rachael Rich, 18, from Sunderland, who has cerebral palsy and is taking part in the research, said moving from child to adult services had been “very difficult”.

“The people who look after my care have all changed, which means there is a growing anxiety for me and my parents regarding who is going to care for me and if they will understand how my disability affects my day to day life,” she said.

‘Crucial research’

“Last year I had an operation for the first time and 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.

“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.”

Northumbria Healthcare Trust chief executive Jim Mackey added: “This research will be crucial in providing clear recommendation to all NHS organisations on exactly how we can together improve the experience and health outcomes for teenagers as they move from children’s to adult services.”