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.

It's not the end, its a new beginning

As we started with a cliched "this is what it's like" post, we end with this "this is how it was" entry.  Except that it isn't the end - at least it better not be.  (I've got a few more blogs up my sleeve for a start).

The last three days of #DPC16 (I'm finding it difficult to stop typing that hashtag - muscle memory at its finest) and the first lead in day of #YDEF16 have been exactly how you'd imagine. Whirlwind, busy, chaotic, tiring and complicated... but also fun, eye opening, insightful, and inspiring.

Pretty much everyone I've spoken to on the last day has asked me the same thing; "How's it been?"  I think my answer's always been the same - incredible.  I probably ran out of proper superlatives at the end of the first day and just settled on that one.

I said at the very start that it's hard to describe the general buzz of the conference and I'm not sure I'm any closer to being able to articulate it now.  I don't suppose that matters too much.  What I think does matter is the messages that come out of the conference.  If you've followed along with any of my tweets, hopefully you've had a sense of both the content of the individual sessions as well as the overarching messages that I think have been present.

If not, I'm going to try and present that a bit more clearly over the next few paragraphs...

I wrote yesterday about how a lot of sessions had references to individual care, some more pointedly than others.  That really feels like the essence of a lot of what I've heard over the last three days.

• Education needs to be individual, as the current offering doesn't suit everyone  
• Targets for people with diabetes need to be individual because what's achievable is different for everyone  
• Type 2 Prevention is potentially individual if we can identify those with specific factors making them more susceptible to the condition
• Transition clinics for younger people with diabetes need to have an individual approach because there are so many individual factors to consider...

People with diabetes aren't numbers.  My diabetes isn't defined by an HbA1c score of 6.6%, cholesterol of 3.2, BMI of 28 any more than the conference is defined by being 3 days long, having 3000 visitors and containing over 100 talks.  You don't get a qualitative understanding by looking at numbers - context is hugely important.

We as people with diabetes know that how our diabetes behaves.  We know that our diabetes is different to other people's.  We know that our care has to be different to other people's because we are all individuals.  The message that care has to be provided on an individual basis came out again and again, and it was very encouraging to see.

There was a clear sense that it's time to stop talking, and start doing.  I think that comes with some caveats though.  "Doing" something isn't always easy - and I think that's where a lot of us feel a sense of frustration, people with diabetes and healthcare professionals alike.   But I think that tide is changing.

I've been fortunate to sit in on some sessions where clinical teams are doing something.  Whether that's redesigning transition services for young people, putting together an integrated care model for repeat DKA admissions, or building a new way of delivering diabetes services for people across an entire CCG.  There are groups of people across the entire UK saying "I know what needs to be done, just let me do it".

Change can be a slow process.  Within an organisation like the NHS it can feel glacial sometimes.  But it's coming - you can sense it.  To me, it feels like there are so many people, doing so much to change care within diabetes that it's going to be difficult to hold it back.  You'll get swept up in it one way or another and have to decide whether you want to ride the wave or drown in it.

So where am I going with all this?  The title of this post alludes to the start of the next chapter for all of us.  The conference has been an incredible experience for me, as I hope it has for every single person there this week.  But what do we do now it's over?  Can we go back to doing what we've been doing?  Was that just three days of information and "oh that's interesting" seminars, or was it actually the start of something?

I walked out of the conference centre this afternoon with a range of emotions.  But the one that I hope to carry forward most of all is that sense of inspiration to do something.  I've been fortunate to meet a HUGE number of people over the last three days, clinical and #doc folk alike.  Every one of them talks about making things better, about changing what isn't working, about doing something... It feels like it's my duty to carry that on outside of the conference walls.

I think if even half the people at the conference leave with that same sense of inspiration and empowerment, the changes we've all longed for in diabetes care will be with us sooner than we all thought.  It's the end of the conference, but it's the start of something new.

Thanks to Diabetes UK for the opportunity to attend the conference, to those who I met, however briefly, to those who stood at lecterns and spoke passionately about what they've already done and what they still strive for, and to those who followed along virtually... thank you.

Taking education to the masses

I’d had my eye on the Education session on Day 1 with equal excitement and trepidation.  The education campaign is one I feel personally connected to.  I felt like the DAFNE course I did has made a huge difference to how I manage my own diabetes, and so hearing a number of professional views on the subject was something I was looking forward to.

Equally, I’d been asked to give a short view of my experiences of education to the assembled professionals, so I was a little nervous about how that was going to go.

If you’ve not had a look at the Diabetes UK Taking Control campaign yet, I’d urge you to start there.  The campaign launched towards the end of last year, and is aimed at making sure everyone is given the chance to learn about their diabetes.  I think we’re at a point now where the evidence for education is no longer in question, we’re now looking at how best to get that education out to as many people.

The session was split down into five talks:

•           Taking Control campaign – Bridget Turner
•           Making the case for diabetes education – Charles Gostling, Helen Hopkinson, Alison White
•           Getting people there – Vivien Coates, Anne Scott
•           Adding options to the education menu – Sarah Newall, Rebecca Owen, Kingshuk Pal
•           Addressing specific local barriers – Tahseen Chowdhury, Seonaid Morrison

Bridget set the scene, explaining why Diabetes UK are championing education and how using an adapted House of Care can be used as a model to deliver education to more people.

Bridget Turner (Director of Policy and Care Improvement at Diabetes UK),
discussing the adapted House of Care model for education

I gave my own (short) view on my personal experience of DAFNE, and why I think education is important.  I won’t dwell on my own personal views too much here, but I generally believe that education helps people become more active in their own healthcare and that in turn helps them achieve better outcomes.  I’ll save that for a separate post outside of the conference.

The stage was set for the other examples from the rest of the speakers.  Charles Gostling started off talking about how they deliver education to people in South London.  He made a great reference to the latest National Diabetes Audit (NDA) data, saying that without clear data, we don’t know where we do things well.  I think that’s a point that can’t be stressed enough.  Without getting side-tracked into a debate on NDA submissions, I think it’s really important to understand your starting position and data is the way you do that.

We know diabetes education referrals are generally low, the take up rates even lower.  Two key messages Charles got across were simple (but important ones).  Firstly, find out why people don’t take up the offer of education.  Secondly, share local success stories.  If someone is doing something well, make sure it’s publicised across your local area so others can learn from it.

Helen Hopkinson then moved onto how the education offering was redesigned, talking through the journey they went on to get to DAFNE (‘because it’s evidence based and we know it works’).  She made a great point that redesigning your education offering can be cost free but when looking at how to do that, you need to engage all your stakeholders.

Why choose DAFNE?

That second aspect sounds so fundamental, that it almost beggars belief that you’d have to say it at all.  It’s a pretty short-sighted approach to try and design something one group of people, that’s paid for by another, provided by a third and ‘marketed’ by a fourth without including them all in the process.  You wouldn’t expect it for iPhones, so why should diabetes education be any different?  It was eye opening in its simplicity.

“Getting People There” looked at reasons why people with diabetes choose not to attend courses (“I learned from other sources”, “more important things to do”, “don’t see the point”).  Some of these struck a chord with me.  I started out with the view that I didn’t need education, but now I’m a big advocate for it.  I think we need to do more to sell the benefits of people who could be persuaded to go if they knew what they’d get from it.  Others need a different model of support – as with everything related to diabetes, one size doesn’t fit all.

As we moved to the discussion on “Adding options to the education menu”, we saw some interesting and innovative ways Lambeth were engaging with different groups within their area.  As with the other parts of the session, there’s some blindingly obvious bits in there too.  If you’ve got an education offering, tell people about it.  Spread the word as much as you can, use community centres, library groups, church meetings – anyone you can – to widen the circle of people who know you have something for them.

One of the most interesting things that came up was the concept of taster sessions.  These are short (90 mins) sessions that act as an introduction to the larger scale education courses on offer.  They’re typically targeted at groups or populations that are historically harder to reach (the example they gave was the Sri Lankan community in Lambeth), or those where Did Not Attend (DNA) rates are higher.   With all the taster sessions, people were ‘followed’ to see how many attended a full course later.  That stood at about 10% for the first year, but it’s hoped to be higher for 2016.

The last bit I’d like to talk about was HeLP Diabetes – an online learning option for people with Type 2 diabetes.  I think it’s important to cover as a lot of people want more online support and if we return to this ground breaking idea of providing what people want, this ticks the boxes.

Around 50% of visitors to the HeLP Diabetes site come outside ‘regular’ working hours, when it’d obviously harder to provide traditional education like DESMOND.  Interestingly, despite some of the upsides to the online delivery (24/7 access, anonymity etc), it still faced some of the more traditional barriers, such as spreading the word about its availability.

I’m a huge advocate of education because I’ve got a deeply personal experience about how it transformed my ability to be in control of my diabetes.  I think the case for things like DAFNE is huge (given its evidence base), and I think that by selling the benefits of the education, we can convince those who have the time, but no inclination, to attend a course and hopefully go on a similar journey to the one I went one.

That said, it’s naïve to think there’s only one way to persist, and if we want to give the benefits of education to as many people as possible, we need to consider how best we offer that education to meet the needs of the many.  “Education is about interaction with others, whether that’s other people with diabetes, healthcare professionals, of your friends and family” – I think many of us who’ve been on a course, or have used social media to help us with our diabetes would agree with that.

The last word should go to Seonaid Morrison from Argyll & Bute on the West Coast of Scotland.  She gave an incredible talk (without slides after a technical problem), on how she crosses a huge geographical area to try and bring education to as many people as possible…

“When you provide education to people, you see the change in them. That's what gets me up and out of bed in a morning”.