Young patients with long term conditions are people who demand and deserve to be heard
Improving transition care services for young people depends on listening to and shaping services around them.
If you reconnect with your teenage self again for a second and remember the various life changes taking place e.g. puberty, leaving school, relationships, leaving home etc. it all starts to feel a little overwhelming, doesn’t it? In short, growing up can be an uphill challenge in itself. So just imagine how hard it is to take that journey as a teenager with a complex and challenging long term health condition to boot?
Hard to picture I know, but for some of the 40,000 under-18s living with a long term health condition in England, it is their reality, and as shown by the Care Quality Commission’s (CQC) new report “From the pond into the sea,” it is a reality that needs a serious facelift. 40,000, that’s two full to capacity O2 stadiums’ of people who are effectively being neglected and getting lost in the British healthcare system.
As a specialist in children and young people’s health experiences at the Picker, I applaud this research but I also question what happens next.
We also recently conducted a piece of research on young people with long-term health conditions by running a series of focus group discussions. Like the CQC report, we found that information about the next stage of their care and meeting new clinicians and / or care teams was vital to successful transition. But our findings also uncovered that a critical element to successful service transfers for these patients was the timing.
Just because one young person is ready to move on from children’s services to adult care, another may not yet feel ready to. If the timing is wrong this can undermine all other efforts to improve transition.
Transition at the wrong time, amongst other factors, can for example affect an individual’s ability to take on any new information about the next stage of their care, or effectively engage with their new care team. Whether it’s taking medication, following medical advice, attendance at appointments or completely dropping out of a care pathway, the potential impact of poor timing can be significant and long-lasting.
But here’s the key; young people want to be involved in their care and planning their transfer. They want to make informed choices that are right for them. This does not change just because you have a long term condition, if anything it becomes more pronounced. However no two young people are the same, all of these factors as well as the support and involvement of parents/carers need to be considered if we are to achieve consistently high quality transitions to adult services.
Over the last few months’ we have been working to enable this independence, by creating a new Patient Reported Experience Measure (PREM), for young people with long-term conditions, who are approaching adulthood.
This work identifies the key indicators of a successful paediatric to adult service transition, and uncovers whether they happened for young patients using a care service. Questions cover areas such as; information being given about the move to adult services, involvement in planning the move, the timings of the transfer to adult services, meeting their new care team or visit their new place of care prior to transfer. As well as wider questions around communication, self-management of their health condition, hospital stays, support, and parental involvement.
By showing if, when and how effectively these events did or did not happen we aim to enable providers of care to take action and improve transition. Here every survey completed is actually a patient’s voice being heard. Every action taken post survey is that voice impacting the behaviour and practice of care providers to deliver better quality care.
Listening to people with long-term conditions and shaping services to fit their needs, will not only improve their experience of transition but can lead to more effective, efficient and high quality care for all.