Transforming Transition

Now I’ll confess I never experienced clinic transition – certainly not in the way we think of it today.  I was diagnosed with Type 1 in 2002 at the age of 21 and after the usual few appointments with my DSN, I was thrown into the all too familiar world of adult clinic – sitting down with a consultant twice a year.

At the time, I wasn’t too bothered.  I was 21, starting my post-grad course at university – for all intents and purposes, I was an adult, and despite the whirlwind of diagnosis, I managed OK…ish…at the beginning.

So what about actual transition for those diagnosed at a younger age?  How are they supported (and indeed how should they be supported) in moving from a paediatric clinic to an adult environment?  Happily, that was the focus of one of the best (and most inspiring) talks I attended this week.

The session was split as follows:

•         Setting the scene with the new diabetes transition sample service specification –Jonathan Valabhji, Bridget Turner
•         Engaging with young people in transition: tools and training for HCPs designed by young people – Heidi Forsyth, Scott Graham, Megan Lott, Lois Marshall, Gemma Thomson
•         Trust, transparency and growing up together: a western tale – Neil Black, Athinyaa Thiraviaraj

The balance that this gave was great – hearing about how it should be done looking at the guidelines, then seeing two real world examples of how it’d been done, one from the viewpoint of people with diabetes, and one from healthcare professionals.  I don’t think it’s overly controversial to say that, whilst DPC is a conference for healthcare professionals, the sprinkling of patient voices throughout brought some of the sessions to life – this was no exception.

So let’s begin at the beginning – why is transition important?   This came across well in all the presentations.  Bridget and Jonathan spoke about how our brain can take up to 25 years to fully develop and so support during this period is vital.  They also spoke about how audit data suggests that young people with diabetes receive poorer care than others (and we know the National Diabetes Audit doesn’t show brilliant care for anyone with Type 1 in particular).  Continuing my unofficial #DPC16 theme, Bridget gave a great example of individual experiences of transition:

How does transition make young people feel?

  

Some of the other challenges included young adults starting university and letters being sent to wrong or old addresses, making it harder for people to engage directly with the service.  Some felt they moved clinics too early, others too late.  Another example of how care plans need to be individualised.

The team from Diabetes Scotland set out one of the clearest examples of why transition is so important, giving this list of what’s happening in young people’s lives between the ages of 16 and 25.  “Try adding managing diabetes into all that as well”

What's going on in your life?  Just this...

There were examples of some good experiences too (which is encouraging).  Those who’d been to defined transition clinics, had had overlap (and continuity of care) with paediatric and adult services or had experienced ‘guided independence’ (i.e. a transition group offering peer support and education) reported positive experiences of transition.  So there are pockets of good practice which is good.  So how can those be expanded?

The Diabetes Scotland team gave a great presentation on the Youth Engagement Toolkit.  They’d developed a set of tools to be used by healthcare professionals with young people in a transition environment.  They included a training day for diabetes teams that was co-facilitated by young people, case studies and videos to better understand young people’s experiences and a Facebook group (plus signposting to it) for young people with Type 1.  These aim to help clinicians build a better connection between themselves and young people, are treat the individual, not the condition.

One quote from the Facebook Group summed up the feelings of one of the young people: “I had no idea that groups like this existed, literally only found out about this group today during a clinic visit.  Nice to know everyone else has the exact same problems and deals with the same stuff, including having the complete fear about every single clinic visit”.  That idea of the benefit of knowing other people all have the same frustrations was something I touched on during my talk in the education session.

The pilot study of the toolkit showed that 97% of healthcare professionals who completed the evaluation thought the toolkit would be beneficial.  I got the chance to meet the team after, and the passion and enthusiasm that came through from the young people involved was clear to see.

Finally, Neil and Athinyaa gave an incredibly moving talk about “Growing up together”.  The simple idea was that while young people are growing up with Type 1, the clinicians too needed to grow their idea of what care in transition should be like.   The first transition clinics in their area came into being in 2007, and whilst they consisted of adult and paediatric joint reviews, “it felt more like two individual sets of care, rather than joined up transition”.

Neil gave a truly moving speech about how social media became the first catalyst for change, back in 2012.  Experiencing tweet-chats on diabetes changed his view on how people were actually living with Type 1 day in, day out.  He said “The power of the diabetes online community cannot be over-estimated” and I think it struck a chord with a number of people in the room.  Athinyaa spoke about what changed over the coming months, talking about how communication skills became a central point of focus.  Instead of asking questions like ‘how is your diabetes?’ or ‘let’s talk about your blood sugars’, conversations became centred on the individual… ‘how are you?’, ‘what would you like to talk about today?’.  Agendas were set by the young person rather than the clinician.

The idea of them as a team ‘growing up’ really came across so passionately, and the journey that they’d been on to learn how to move to deliver that individual care was clear to see.

The speakers in the Transition session

Transition can’t be an easy time for anyone living with diabetes, and whilst I never experienced that directly, a lot of the messages about how young people can feel totally disengaged with their diabetes really struck a chord with me.  It’s refreshing to see that there’s now a (non-mandatory) service specification for commissioners when looking at transition, and being able to hear about experiences from both sides of the appointment table was really refreshing.  I got to speak to everyone involved in the session afterwards and the genuine emotional connection they all feel with the topic had definitely inspired the room.  We know there’s lots of areas for improvement in diabetes care (not least transition), but I think it’s got a lot of focus and good things are coming.