• Care and support given to young people with long-term conditions is too variable, say researchers
  • Providers should adopt three beneficial features into their transitional care programmes as a minimum

The care and support given to young people with long-term conditions is too variable and some providers need to better tailor their services to individuals, according to new research.

A seven-year research programme, funded by the National Institute of Health Research, has found young people with long-term conditions, such as cerebral palsy or type-one diabetes, still receive variable support when moving from child to adult services.

Children with chronic long-term conditions are living longer, with more now reaching adulthood. This means more people are transitioning to adult services, so the report focussed on how the health service can improve how that transition is handled.

Jeremy Parr, one of the programme’s researchers, told HSJ: “If a 14-year-old is more like a young adult, we need to be thinking carefully about whether they want to be sat in a clinic with a load of five-year-olds, or whether for them it might be more appropriate to be sat in a health setting, if they’re 6’2” and of the right developmental stage, with adults.

“But of course, we don’t think of it that way in the NHS at the moment. We don’t tend to think that way as an organisation. Some specific centres might think that way because they have these enthusiasts, if you like.

“There’s no reason why, as an ethos, it couldn’t be put in place in a trust. It’s just a case of tailoring our approach more to the way a young person and their family are.”

Children and young people develop from their early teens to early 20s at different rates, the report said, so healthcare must be provided to young people based on their stage of physical and mental development and not just their age.

The study identified three “proposed beneficial features of transitional health care” that were “significantly associated with better outcomes”. They focus on ensuring a child and young person continues to engage with their care provider through transition.

The researchers call for providers, at a minimum, to have an appropriate level of parental involvement that suits the parent and young person, to promote a young person’s confidence in managing their health, and ensure they meet the adult services team before they transfer.

The research estimated a typical trust serving a population of 270,000 will have “approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year”. As transition lasts until the age of 24, this means a trust will have approximately 700 children and young people in transition at any one time, it added.