Too old for paediatrics, too young for adult services: the problem that must be solved

Often in health policy we encounter problems that are so complex and intractable that solving them can feel virtually impossible. Take the conundrum of how to meet society’s almost insatiable appetite for new, high-cost drugs when existing health care budgets are stretched to their limits. Or the puzzle of how to improve productivity in a system where staff are burnt out and patients present with more complex and often multiple conditions. 

But sometimes a problem presents itself where a solution is almost deceptively simple. Where there seems to be an unequivocally “right” way forward and, crucially, growing consensus from those involved that change needs to happen. Last week, at the RCPCH’s annual conference, we brought together a debate about something that matches this description – a problem with a workable and practical solution that is potentially within reach. 

The problem? The extraordinary lack of coordination that is too often experienced by older teenagers when they move from paediatric to adult health services. A lack of coordination that means services in some parts of the country view anyone over the age of 16 (and in some cases as young as 14) as an adult, while others retain control over their care in paediatrics until at least 18. 

This patchwork of variation means that young people are faced with bewildering situations where care for one of their conditions is with paediatrics but another will be on an adult ward. Or worse still, that for certain services, at 16 or 17 years of age they are left without any specialist health care – stranded between adult and paediatric services who both say they fall outside their age-based acceptance criteria. Confusing messages from different parts of the NHS make it impossible for young people to know who really owns their care. 

Harmful confusion

One young person involved in the RCPCH &Us engagement programme described how she had been told she could retain a specialist nurse in paediatrics for her long-term condition, but then was told she couldn’t speak to this nurse when ringing the ward as her date of birth made her ineligible for paediatric care. 

Another young person described how patchy transition arrangements undermined her trust in her medical team and delayed her receiving the right treatment for her condition. The gaps in health care for this group are turning unwell and vulnerable young people into experts at navigating a system that is failing them.

This is a problem that has been hiding in plain sight for many years. But, as NHS England’s Children and Young People’s lead Professor Simon Kenny highlighted during our discussion, was brought to the fore during Covid-19. It’s also a problem with severe and sometimes tragic consequences. 

Median wait times for outpatient care are 18% higher on average for 16–17-year-olds than for those both younger and older than them. And, as the devastating case of Rohan Godhania revealed, it can have fatal consequences if young people fall between the cracks and care is slow or, worse, unavailable because they are, in the words of one young person: “Too old for paediatric and too young for adults.”

Young people themselves want change. In a short clip prepared for the conference by the RCPCH engagement team, young people said “how can you expect young people to leave the care of their clinicians under 18 when their brains aren’t fully developed and by the law they aren’t seen as adults?”

And professionals seem ready for a change. Everyone on our panel – from Carli Whittaker, a senior nurse, to Dr Scott Hendry, a specialist in urgent paediatric care – felt that the status quo needed to change. As Emma Parish, a consultant in paediatric and adolescent medicine, said: “For decades now, we have all agreed on what good transition and age-appropriate care looks like, and there are pockets of excellence everywhere – but it is time that we grasped the nettle and embrace a more fundamental change.”

NHS England recently published a transition framework that starts to address this gap in care, by explicitly making it an ICB’s commissioning responsibility to ensure no young person can be left stranded between local services based on their age. But that does not solve the confusing landscape of age cut-offs for services.

Why not just extend paediatric care to 18?

So what’s the solution? It’s beguilingly simple – what if we could all agree that paediatric care is routinely extended to a young person’s 18th birthday? This is already the case for mental health services and matches the same point at which children legally become an adult, and below which the UN convention on the rights of the child – now enshrined in law in Scotland – defines them as children. This idea was supported by over 75% of those in the room, a proportion that increased as the session went on.

So what’s the catch? Why, if this change is so simple, has it not been done already? Our panel highlighted a range of reasons. One is mistrust: paediatricians can feel protective of young people with complex needs and feel worried that adult services may not be ready to care for them, while adult clinicians may feel less confident managing adolescents. Another is fear: some clinicians are concerned about being forced by this change to work beyond their scope of practice. And effecting change in a system stretched often to its limits, where meeting current need is challenging, is no mean feat. 

But the panel agreed that this is precisely why clearer national guidance is needed: to remove ambiguity, reduce variation, and create a consistent benchmark for services across the country. Raising the transition age to 18 was agreed to be the most pragmatic solution – aligning health care more closely with the legal definition of adulthood and providing much-needed clarity for young people, families and clinicians alike. Some panel members argued that an even higher threshold might ultimately be preferable, though this was one of the few areas where views diverged.

Before we get too carried away with the apparent simplicity of the solution, however, one audience question highlighted a harder problem: what happens when young people reach adulthood and there is no adult equivalent of the care they have been receiving? Young people with complex neurodisability supported by community paediatric services, for example, may find there is no comparable specialist service for adults. Changing the threshold would not solve that problem; it would only move it down the line. But there was consensus that more should be done to engage professional groups working with adults – from GPs to other primary care staff – to address this.

Policy change is hard to effect in a complex system like the NHS. But when patients, professionals and policymakers come together as they did at the RCPCH last Wednesday, it’s hard to feel anything but optimistic that the nettle will finally be grasped. 

Leonora Merry is Director of Communications and External Affairs at the Nuffield Trust. Ronny Cheung is a Consultant Paediatrician at Evelina London Children’s Hospital, and an Officer for Health Services at the Royal College of Paediatrics & Child Health.