Research suggests improvements to put youngsters at heart of NHS care
A major national study based in the North East has recommended a number of improvements which would place young people with long-term health conditions at the heart of their NHS care.
The research, by Newcastle University, Northumbria Healthcare NHS Foundation Trust and other UK institutions, has concluded that introducing six key factors would be likely to improve the health and experiences of young people moving from children's to adults' services.
The five-year programme examined the period when young people with conditions such as autism spectrum disorder, cerebral palsy, diabetes, cystic fibrosis, chronic mental health problems and muscular dystrophy transfer from children's to adults' services—known as 'transition'. Typically this occurs between the ages of 14 and 21.
The research recommended that discussions should take place with young people about their individual approach to healthcare in order to personalise communication with them.
Better outcomes for patients
Promoting young people's confidence in managing their own health, involving parents appropriately and meeting the adult team prior to transferring were associated with better outcomes for patients, the study also found.
With regards to 'transitional' services, the study suggested developing those which take into account the changing physical, social and psychological needs of young people.
It also recommended clinicians from adults' and children's services coming together with GPs to plan health services, NHS trusts adopting an organisational-wide approach to implementing them and commissioners of adult services being involved in developing them alongside commissioners of children's services.
The study, published today by the National Institute for Health Research (NIHR), is the most comprehensive to date, involving around 400 young people, aged 14-18 years, with long-term health conditions from 27 NHS trusts across the UK.
The research findings have already been put into practice at Sheffield Children's NHS Foundation Trust and informed the transition content in the NHS' Long Term Plan and NICE (National Institute for Health and Care Excellence) guidance.
Professor Allan Colver, who was consultant paediatrician at Northumbria Healthcare NHS Foundation Trust, and is currently professor of community child health at Newcastle University, led the programme.
He said: "We all know that the teenage years are challenging and when a young person is also dealing with living with a long-term condition, it can add additional strain to what can already be a difficult period of their lives.
"The process of moving from children's services, where everything tends to be organised by children's services and parents, to adults' services, where young people take more responsibility for their healthcare, can be disorientating.
"Due to their brain development, young people's ability to manage time, plan and multi-task has not matured fully and as a result, they can be not well-organised and consultations with clinical staff may be confusing both for young people and staff.
"Developing services which take account of a young person's stage of physical, social and psychological development—known as 'developmentally-appropriate healthcare' – which put them at the heart of their care is needed.
"For example, clinical staff should consider re-sending an appointment to a 17-year-old who has missed one without explanation; whereas for a 30-year-old, the policy of many NHS trusts is for no further appointment to be sent.
"We're pleased that our findings are already being used to make a difference to young people and, now that our recommendations have been published, we hope that they will help to improve the healthcare of young people across the country."
Sir James Mackey, chief executive of Northumbria Healthcare NHS Foundation Trust, said: "We're delighted that this major piece of research—the first for our trust to be awarded a programme grant from the NIHR—has concluded.
"This is such a significant area of healthcare at a crucial part in teenagers' lives and these findings have the potential to benefit young people nation-wide.
"I'd like to thank Prof Colver and the team for shining a light on this important issue."
Patient meets adult team to help ease transition
Jessica Onyebuchi, 17, has had chronic arthritis since the age of 11.
Over the years she has needed to stay overnight in hospital, have regular hospital appointments and medication to bring her condition under control so that she can usually be free of pain and able to do what she wants.
Jessica, from Gateshead, said she is 'apprehensive' about transition however it has helped to meet the doctor in the adult team, at a different hospital, to whom her care will transfer in due course.
She said: "Transition is a big deal to me because there are so many other things going on in my life—exams, friendships and so on. As arthritis really affects me, I can't forget about it.
"My mother is still involved, but gradually more of the discussions are with me by myself which is daunting."