Research suggests improvements to put young people at the heart of NHS care

A major national study based in the Northeast has recommended a number of improvements that would put young people with long-term health problems at the heart of their NHS care.

Research conducted by the University of Newcastle, the NHS Foundation Trust of Northumbria Healthcare and other UK institutions concluded that the introduction of six key factors would likely improve the health and experience of youth transitioning from children's services to adult services.

The five-year program examined the period during which youth with disorders such as autism spectrum disorders, cerebral palsy, diabetes, cystic fibrosis, chronic mental health issues and the transfer of muscular dystrophy services for children to adult services, called "transition". Typically, this occurs between the ages of 14 and 21.

The research recommended that discussions be held with youth on their individual approach to health care in order to personalize communication with them.

Better results for patients

The study also found that young people's confidence in managing their own health, by badociating parents appropriately and meeting with the adult team prior to transfer, was badociated with better results for patients.

With regard to "transition" services, the study suggested developing those that take into account the changing physical, social and psychological needs of young people.

It has also recommended clinicians for adult and child services meeting with general practitioners to plan health services, NHS trusts to adopt an organizational approach to implement them and adult services commissioners to them. develop alongside the commissioners of children's services.

The study, published today by the National Institute of Health Research (NIHR), is the most comprehensive to date. It involves approximately 400 young people aged 14 to 18 with long-term health problems in 27 UK NHS Trusts.

The findings of the research have already been put into practice by the Sheffield Children's NHS Foundation and have informed the content of the transition in the NHS long-term plan and in the guidelines of the NICE (National Institute for excellence in care and care).

Professor Allan Colver, consultant pediatrician of the NHS Foundation Trust of Northumbria Healthcare, and currently Professor of Community Children's Health at Newcastle University, led the program.

"We all know that teens are difficult and that when a young person also has to live with a long-term illness, this can add an extra burden to what can already be a difficult time of his life. .

"The process of moving from children's services, where everything tends to be organized by children's services and parents, to adult services, where young people take on more responsibility for health care, may be disoriented.

"Due to their brain development, the ability of young people to manage their time, their planning and the performance of multiple tasks has not yet reached full maturity.Therefore, they may not be well organized and consultations with clinical staff can be confusing for youth and staff.

"It is necessary to develop services that take into account the stage of physical, social and psychological development of young people, called" development-friendly health care ", which places them at the heart of their care.

"For example, clinical staff should consider sending an appointment to a 17-year-old who has forgotten one without explanation, while for a 30-year-old, many NHS trusts have a policy of no longer sending of appointments.

"We are pleased that our results are already being used to make a difference for young people and, now that our recommendations have been published, we hope they will help improve youth health care across the country."

Sir James Mackey, General Manager of the NHS Foundation Trust of Northumbria Healthcare, said: "We are delighted that this important research work – the first one for which we have obtained an NHRI program grant – is complete.

"This is an important area of ​​health that plays a crucial role in teenagers' lives, and these results could benefit young people across the country."

"I would like to thank Professor Colver and his team for bringing this important issue to light."

Patient meets adult team to ease transition

Jessica Onyebuchi, 17, suffers from chronic arthritis since the age of 11.

Over the years, she had to spend the night in the hospital, have regular appointments at the hospital and take medication to control her condition, so that she generally can not to suffer and to be able to do what she wants.

Jessica, of Gateshead, said that she was "worried" about the transition, but this allowed to meet the doctor of the adult team, in another hospital, to whom his care will be transferred in time. desired.

She said: "The transition is a big problem for me because there are many other things in my life: exams, friendships, etc.". As arthritis really touches me, I can not forget it.

"My mother is always involved, but little by little, the discussions are with me by myself, which is intimidating."