Transition to adult care: The Inbetweeners

Automatic transcript, lightly edited for readability. It may contain errors, so check it against the video before quoting.

So I'm going to talk about the Inbetweeners, which is a study done by NCEPOD. NCEPOD is the National Confidential Inquiry into Patient Outcome and Death. And we did a study in 2023 about transition. So the care of young people moving from paediatric services into adult services. And we looked particularly at patients with complex conditions. So they had to have at least two diagnoses.

And the National Confidential Inquiry into Patient Outcome and Death, NCEPOD, is really like peer review, so it's not audit, it's not research, but we look at patient pathways from multiple angles. So the methodology includes questionnaires which we send to organisations as well as clinicians, to patients, and in this case to the young people and parent carers. We also sent questionnaires to social care and to primary care. And then we also collect notes and we do note review, and we go through the notes in detail, and while we're going through the notes, we fill out a survey pulling out the pertinent points about transition. And then at the end of collecting all that data, we put it together in a report and we produced recommendations based on that.

So we had around 400 sets of notes which we looked at. We had around 800 surveys from both organisations and individuals. And then the overall quality of care, which we assessed from all those data points, was that we found that transition was poor or inadequate in 50% of cases. So not really unexpected actually. We know that for transition there is guidance, there's NICE guidance and other policies and guidance from other bodies. We know what to do but we have real challenges in achieving good transition.

So based on the report we came out with several recommendations. One of the main recommendations was to make developmentally appropriate healthcare core business. So we found when we did the study that very few individuals had transition in their job plan, in fact 9%. So that was something that we really wanted to push forward. As well as that, training was really lacking in developmentally appropriate healthcare. So a real push to have that mandatory in organisations.

Another recommendation was to have young people involved in transition care. So that was really lacking. In fact it is barely there that young people were part of the process. So to really involve them. And then as you can imagine with these patients who have very complex conditions, they have many different specialties taking part in their care and we found that they were working in silos. So another recommendation was to bring together those individuals and have regular MDTs to discuss transition.

We also wanted there to be better recognition. So we recommended that there was somebody on the board of hospitals representing transition. Following on from the Inbetweeners, so now 3 years later, we have asked stakeholders what they're doing and if there is any progress being made, and it's looking reasonably positive. So we've had lots of feedback that things are beginning to change, and we are seeing policies being introduced to hospitals for transition, and it playing a much bigger role in services, and that young people are beginning to get better transition.