Thursday, 3 March 2016

Individual Care

This post is a bit of a mashup of a few different sessions that I attended on Day 2.  For the sake of consistency, today for me consisted of:

Janet Kinson Lecture

  • It's education Jim but not as we know it - Helen Rogers

Debate: Prevention of diabetes: Popping a Pill or Running a Mile
  • Popping a pill - Kamlesh Khunti
  • Running a mile - Naresh Kanumilli

Service redesign and attention to detail: can it improve outcomes in children and young people?
  • Improving paediatric outcomes: the Diabeter Experience - HenkVeeze
  • Target setting: what's new in the NICE guidelines? - Julie Edge
  • Blood glucose monitoring: Making the most of downloads - Iain Cranston

Quality in Care (QiC) Diabetes
  • My Diabetes My Way - Scott Cunningham
  • Sugarbuddies - Sarah Woodward, Kelly Carden

Individualising targets in diabetes: NICE or not NICE
  • Setting the scene: a patient's perspective - Laura Cleverly
  • Which target for which patient - Brian Frier
  • NICE guidelines: Type 2 diabetes - David Millar-Jones
  • NICE guidelines: Type 1 diabetes: a utopian fantasy? - Partha Kar

There was a lot of variation in the sessions I attended, and a great many highlights (including Kamlesh Khunti arguing against some of his own research in the Prevention debate, and seeing some of the people I class as friends deliver some great talks).

But what's becoming more and more apparent the more talks I sit in are a few key themes that are common:
  • Education plays a hugely important role in helping people with diabetes
  • Diabetes is an individual condition and care has to be individual (linked to education above)
  • Changes to care don't neatly adhere to a one size fits all strategy
What I'm going to try and do is bring in elements of both the Service Redesign and NICE guideline sessions to (hopefully) get across some of the ideas that make diabetes care challenging, both for people with diabetes, and for those delivering care.

The session on NICE guidelines in service redesign highlighted one very simple point - nothing is really that new.  The guidelines today and the guidelines from 1993 are markedly similar, though that doesn't necessarily make it easier for families to meet those guidelines.

What was clear (and came up in other sessions) was that taking the HbA1c guideline of 48mmol/mol (or 6.5% in old money) definitely won't work for everybody.  Evidence suggests that an HbA1c at that level will reduce your risk of complications - but again that  doesn't make it easy to get to, or appropriate for everyone.

Relative risk of different complications vs HbA1c level

Julie Edge gave a great archery analogy - make 6.5% the middle of an archery target (i.e. what you aim for), sometimes you might hit it, other times you won't.  The further away you are, the more you need to make adjustments.

But making adjustments and setting the targets is where it gets tricky.  The target can't be 6.5% for everyone (and nor should it).  Making adjustments when you don't hit the 'bullseye' needs support and help.  Interestingly, even aiming for a target of 6.5% may not help you - studies show that if you aim for 6.5%, chances are you'll achieve 7%.

Aim for the left, you'll probably hit the right
What people need is individual support to understand what's appropriate for them and what's achievable based on their current circumstances.

In the afternoon, the NICE Guideline discussion started to a packed room (and an overflow room listening in).  Laura began with a stark statement - "Some of the NICE guidelines have made me feel like I've been put in a box where I don't belong" and I think that made a lot of people sit up and take notice.

Working through some of the new guidelines, Laura explained that clinic appointments with her consultant worked through her circumstances and looked at what external factors were impacting on her outcomes (such as HbA1c).  A visit to her GP was different - "You need to improve your control".  A question at the end of her talk asked for her views on individual targets for the guidelines - the answer was a simple one "Yes there should be individual targets, and NICE guidelines encourage it.  But how often is it actually done".

Brian Freer followed and spoke well about how targets could/should be set for individuals, and at the end there were a few questions/comments from the audience:
  • "If we say to a patient that their target HbA1c is 6.5% but we don't expect you to get there, then should be surprised if/when they don't?"
  • "If you pay GPs to hit specific targets, are they really going to set individual goals?"
  • "You can't treat diabetes by guidelines. You have to treat the individual in front of you."
There's a theme developing...

Partha took to the stage to talk about the practicalities of the Type 1 NICE guidelines.  He made some stark points that really should give food for thought.  He was keen to stress he wasn't criticising the guidelines but had some points he wanted to raise.

You could summarise his talk into a discussion of the language used in the guidelines.  
  • "People with diabetes should be offered an education course with proven benefit.... well we do offer it - it's just no-one goes.  Is 'offer' the right word?"
  • "NICE guidelines says people with Type 1 should have access to a minimum of four test strips per day.  Using four strips per day exists only in Narnia"
Partha rightly questioned the need for updated guidelines, asking if the last document hadn't made significant differences, why would the new one?  What I took away from what Partha said was that we know what the right things are, and the guidelines make that clear - they're grounded in evidence.

What needs to be better is the implementation of all this.  Writing the guidelines is a long process.  Making sure they contain proper guidance that will positively impact people with Type 1 (in this case) is no easy challenge.  But writing the guidance doesn't magically bring about change in how that guidance is translated to real world care.

Mike stood up at the end and spoke in response to Partha's session.  The one thing he said so passionately that resonated with the entire room was "I don't want you to tell me what's easy, I want to know what works.  If an HbA1c of 6.5% means I have fewer complications, I can understand how hard I have to work to get there.  How much 'better' is it and how much more effort is it to get from say 7% to 6.5%?  Then I can make that decision about what I think my target should be."

I think the theme of individual care has come across really strongly in many sessions in the conference already.  No-one I've heard thinks it's a bad idea - far from it.  There's a clear desire from healthcare professionals (and people with diabetes) to champion individual care.  We can't all fit into one box, we can't be given a one size fits all target.  We all have different support needs, we all have different requirements when it comes to how we engage with education.

The argument isn't about individual care.  The argument is about how we change the system to make sure that individual care is delivered to everyone with diabetes.

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