NCEPOD ( The National Confidential Inquiry into Patient Outcome and Death) released a report last week into transition with five recommendations. Sadly, the main message is that despite Royal College of Nursing, NICE, and Royal College of Paediatric and Child Health reports and guidance in the last ten years, little has changed on the ground for patients. AYPH Research Associate Dr Lizzie Wortley, reflects on the issues raised.
The report calls for more patient centred, developmentally appropriate transition and a call for leadership to ensure this is the responsibility of any professional who is working with young people, alongside more executive oversight, and not just one or two people in an organisation.
The NCEPOD report adds a sense of urgency to getting transition right. More evidence from young people and parent/carers further highlights their experiences and what the impact of transition was. Whilst there are some wonderful holistic experiences highlighted, the voices of those who did not have a good transition are very powerful.
As one young person said: “I’m at the age where I can’t use paediatric services and I can’t use adult services, so who do I go to?”
A parent commented: “This is how children fall down the gaps, they become unwell, and they don’t know who to return to.”
Reading the report recalled the work we did last year for NHS England about young people falling between secondary care services at around 16 years old. In some cases paediatric services stop at 16 and adult services don’t start until 18, leaving a GP holding complex problems whilst waiting for a transfer or referral to occur. The report also highlights that chronic conditions can start in adolescence, just as gaps in services are opening up. You can read our report on access to secondary care here.
Added together, what we are seeing is a chasm between paediatric and adult services that only 40-60% hospitals appear to be managing. The risk of leaving young people adrift at a time of other transitions in their life and whilst developmentally vulnerable cannot be overstated. Every healthcare system has their own cut offs and ways of doing transition may complicate things, but this also allows teams to adapt to their local need. However, as highlighted in the NCEPOD report, the role of senior leadership in community and adult services is vital, to avoid the challenge of trying to find a space for young people to move into resting solely with just the paediatric services.
We really welcome the NCEPOD report and its recommendations. At AYPH we’ll continue to highlight the importance of getting transition right and supporting young people and professionals in this area wherever we can.