curesam-playtime-2

HbA1c targets…

December 11, 2014 | 3:25 pm

Talk on Social Media this morning has been mostly about next years NICE guidelines (or the latest draft of them), particularly pertaining to Continuous Glucose Monitoring (CGM) and HbA1C targets.

It seems that more criteria are being set within the new NICE guidelines to try and encourage service providers to use CGM’s in more situations – which can only be a good thing.

More importantly, it seems that a new target of 6.5% for a child’s average HbA1c level might be introduced. The current target is 7.5%. Apparently, only 3% currently achieve the 6.5% level. As we are one of those 3%, I thought I’d blog this morning about how (we think) we do it….

- Disclaimer – This is not an attempt to blow our own trumpet…. More an example that it can be achieved.

We have been using a Dexcom CGM for nigh on 3 years now. We self fund and made the decision to go down this route 6-9 months after Samuel had been given his Roche Accuchek Combi Insulin pump. He has been diagnosed just over 4 years now, so apart from the first three months when he was on multiple daily injections (MDI), his care has always been pretty cutting edge. This is largely down to the support team at Bassetlaw Hospital, who have been excellent. They had us carb counting from day 1 – he was on a pump within three months, and we continued to ride the technological wave by self funding on the Dexcom. We meet our Diabetic Specialist Nurse (DSN) and Consultant quarterly and see a nutritionist annually.

All of these things I mention because they are the building blocks on which Sam’s care is based. Having these tools in place enables us to do the thing that I believe keeps his HbA1C where it is, whilst not having lots of severe hypo’s.

That ‘thing’ is micro-managing…. We (Samuel, Nikki and I) are always much more aware of where Sam’s BG’s are, because it’s just a quick glance on the Dexcom screen rather than going through all the rigmarole of getting the meter out, pricking his finger etc… For a 15 year old teenager, to be constantly asked by your parents… “What are your bloods?”, “How were your BG’s today?”, “Are you low?”… etc – well, thats going to get pretty annoying! The easy thing for Samuel is just to glance at the screen and he can shut us up! He’s learned to trust it, and 95% of the time its bang on.

It’s a subtle thing but very important. Many parents talk about burn out. Many teenagers want to rebel against their T1. The Dexcom allows us to keep the management more in the background, without sacrificing his level of care.

To have a similar level of control without CGM would require at least 15 blood tests per day (and more when exercising, doing exams, during illness etc). That number of finger pricks doesn’t bear thinking about now, although we were averaging that level for a time (before CGM). I firmly believe we’d have dropped back to below 10 a day, just to take the constant pressure off Sam of always having to check. What teenager wants that? But then the level of control would decrease. The number of highs would increase, so would the number of hypo’s and as control diminishes, the dreaded HbA1c goes up….

The CGM allows you to take that pressure off, so tight management isn’t such a drag and more achievable.

It’s like anything in life – people will do it better if it’s easier to do it better!

If more people had access to CGM’s, then from our experience, more people would be able to get their average HbA1C to 6.5% or below. The 3% would increase….

Trying to get everyone to 6.5%, well that’s a huge challenge…

To do it without a CGM? I can’t see how its possible….


Posted by Gareth

4 Responses to HbA1c targets…

  1. Anne Anne says:

    I totally agree. Our 13year old daughter has been given a temporary loan of a Dexcom from her clinic and it has changed everything for us (to the extent that we are now considering the self funding route). We have always worked hard at her care – she is not the only diabetic in the family so we had a bit of a head start. Like you we were fast tracked into carb counting and then a pump by a very supportive clinic. We only get to keep the Dexcom for one sensor’s worth, but as it is just starting to lose accuracy after an amazing 31 days, we have had plenty of time to get our heads round daily management using the data it provides.

    Key discoveries include :
    1) daughter is hypo unaware most of the time. A scary finding, but it makes sense as finger stick blood glucose readings have tended to show higher numbers than HbA1c would suggest. We must have been missing hypos in between.
    2) information supporting micro management makes a huge difference. We may or may not see a reduction in HbA1c next clinic as we only have it for a short time, but average blood glucose readings have dropped dramatically. (33% improvement in average over last 2 weeks compared to 2 weeks before the cgm).
    3) we have been right in our belief that insulin needs vary dramatically (puberty is a real pain!). We are constantly chasing increases and decreases in insulin needs – total daily dose can double over the course of a month ans still not be enough! The cgm shows us far more clearly when we need to change things, so we can keep closer to her needs rather than spending weeks building up doses, gradually chasing highs but never quite ‘winning’ and then crashing back down with multiple hypos as her insulin requirement drops away rapidly.

    Having learned these things I can’t imagine how we could possibly maintain the level of care we have managed over the last month without use of a cgm.

    We can’t be unusual – there must be many people out there who are unknowingly dealing with the same challenges, putting everything they have into diabetes care with information so limited they have no real chance of success.

    (One last thing about cgm from our daughter’s perspective – she has finally been able to be independent and go to a sleepover and a pool party with the back-up of the Dexcom and its alarms!)

  2. adming Gareth says:

    Thanks for your feedback Anne. Since writing this blog, I’ve heard very little about the changes…. We are at clinic this week – I wonder it it will come up?

  3. Anna Hutton Anna Hutton says:

    My first thought on reading the new NICE guidelines was that more kids need funded CGMs. Well, that has always been my thought and my 7 year old son is one of the few lucky children to have Dexcom funded by NHS and to have had his HbA1c 6.5% or under for the last 2 years. We were doing an average of 24 finger pricks every 24 hours to achieve this until we got the DEX 14 months ago. Great that NICE has finally set targets for children to be as close to normal HbA1c as possible so that diabetic complications can hopefully be reduced BUT families with children with type 1 need the tools to achieve this. It is so hard to manage this disease and kids deserve a healthy future and they deserve the freedom now that a CGM can give. The Dexcom G5 gives a freedom we could only ever have dreamt of and I long for my boy to have G5 and other children in the UK to have access to the technology that can make life easier, give freedom and improve health.

  4. Gareth Gareth says:

    Thanks for the comment Anna. We were at the CWD Friends for Life conference in Windsor this weekend and the number of children there with CGM was much higher than 3%, but then the people at that conference don’t really represent the whole population. I do hope that more children will get to see the benefit now the NICE guidelines have changed, but from what I heard in one session, its not really down to the guidelines as much as which consultant you have. Some are good, some not so good!

    We know from experience that our consultant is very pro on new technologies, but even she has struggled to get funding for us, which is why we pay ourselves.

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>