Posted by on Monday, 14 April 2014

Diabetes Speed Dating Clinic Type Thing

Some months ago I found myself looking back over the past few years.

If you've read our blog before (congratulations on your uncommon stick-ability) you may remember that we began writing about my diabetes as a family as a result of an unusually nasty hypo. One which made me question whether I was quite as competent at managing my diabetes as I liked to think I was. Posts from others in the household have dwindled rather, and you've ended up stuck with me. Sorry about that. But I look back over the past few years and realise that I have been on a full-on misty-eyed X-Factor-Strictly-Voice-finallist 'journey'.

I was reminded about this yesterday while reading a blog post by The Grumpy Pumper about his own story of venturing into the Diabetes Online Community (DOC). I have had similar conversations with Dave (@SowerBee) previously too.

It seems to go something like this...

  1. Get diagnosed
  2. Learn to muddle along in your own way, with varying degrees of success
  3. Never, or almost never, meet or speak to another actual real-life person with diabetes
  4. Feel slightly isolated and faintly dissatisfied with how you are doing but don't know what to do about it
  5. Lose a bit of faith in suggestions made by various healthcare professionals/clinics/consultants/registrars/DSNs (what do *they* know - they don't live with this day-to-day, harrumph etc)
  6. Carry on for 5/10/15/20 years
  7. *Something* happens
  8. Look for support online and/or meet other PWD face-to-face (eg on DAFNE)
  9. Lightbulb moments ensue
  10. Engage, share, try new strategies, feel empowered
  11. Understanding and management of condition is transformed

Now here's the thing.

This is a pattern I see repeating, time and time again in the experiences of others just as it did with me.

But there are still so many people at point 5 or 6. People for whom the standard structure of clinic appointments just isn't quite working, but who either don't realise that 'peer support' like the DOC exists, or who would run a mile from the very idea of it, believing that it is 'not for them'. I know the second group well. I was a fully paid-up member for all the years that deep-down in my heart I knew I was struggling a little, but made myself believe that 'this was as good as could be expected' and 'nothing works'. Of the 300,000 people living with Type 1 in the UK how many are connected with others? 3,000? 10,000? That still leaves the vast majority 'soldiering on' on their own with only an Annual Review for company.

So what can we do for them?

Don't get me wrong. I'm not saying that peer support could fully replace 'proper' consultations with qualified and well-trained healthcare professionals. I am aware that dark, weird and scary corners of the internet exist, where all sorts of odd ideas are bandied about as fact (though these are hard to maintain in well-populated, mixed groups and in my experience the DOC doesn't stand for nonsense). But I'm also aware that there is nothing quite like hearing experiences of someone in your position, who does live with the same condition as you every day. Who faces the same struggles and has tried strategies that you might consider.

I've also spotted another phenomenon. If you attend a 'meet up' of forum posters, bloggers, tweeters or others who live with diabetes you will not be able to get them to shut up. In fact, you will struggle to get a word in edgeways. Questions will be asked, approaches and strategies compared, support offered, understanding and empathy for the sheer relentlessness of it all given freely.

I'm also aware that every day, up and down the land, dozens of people sit side-by-side with other people with diabetes in stony silence.

And this strikes me as odd. Or at the very least a massive missed opportunity.

I've been meaning to write this post for months, but kept putting it off because I could never quite get my head around the details. To be honest I couldn't even work out a proper title for the post (this you will have noticed). But the time has come to just 'put it out there' to see if some brave Consultant or Clinical Lead can do something with it. Someone like Partha perhaps?

Here it is: Wouldn't it be great if there was a way to harness all those wasted minutes in the waiting rooms at diabetes clinics. If there was some way of facilitating peer discussion and support while we are all sat there waiting for our number to come up. At the very least it might prompt some actual questions to ask in the appointment itself, rather than everyone just sullenly descending into smile-grunt-nod territory.

Something a bit like speed-dating. Sit opposite a person or two for 5 minutes, ask them how they are getting on. How long they have had diabetes. Is there anything they particularly struggle with. Do they have the same problem I do with this or that? What do they do about it? Ring a bell, everyone moves around... 'You'll never guess what that last bloke said...' 'Really? Oh I get that too...'

Of course there would have to be some sort of 'opt out' for people who simply can't face the idea. But I'd love it if we could break the unwritten rule in diabetes clinic waiting rooms that 'thou shalt not say anything to anyone'. For people to be actively encouraged to compare experiences and support each other. So that each clinic appointment would combine the very best of both D-meetups and HCP input.

If that was on offer - would you join in?


  1. Excellent post Mike. You've summarised some of my recent thoughts. My other concern is that many (in my experience) HCPs could do with sitting in too. As for joining in myself. I would now. I doubt I would have done when I was at stage 6. Sadly, probably due to stage 3, a lot of us see it as 'our' problem and not something to be discussed. There's also the problem that many clinics are being devolved to GP supervision. That way you're unlikely to bump into another PWD, even at your own appointment. It's an interesting idea though and would help many of the 300,000 become active DOC members. I hope there's a way forward with it.

  2. Mike, this is certainly one of your best posts! Great idea and well explained in my view.
    I agree with a couple of things the previous poster said though - firstly about many people seeing Diabetes as their problem, with issues that are unique to them that nobody else will be interested in hearing about, let alone have experienced! Also, the issue of GP surgeries taking over from clinics is a real bugbear, cos like it or not, that group of HCPs do not have the specialist knowledge to advise properly - after all, surely they're not called GENERAL Practitioners for nothing!!! And as your previous poster says, they'll fit in appointments for PWD where possible...
    However, I do think it would be worth trying. Even if some brave pilots lead the way, they will demonstrate whether it works or not, which will show how improvements can be made, and so on.
    In addition, it would be good to promote the meet ups where ever possible, not just in clinics or surgeries, but to encourage more people to talk. Not everybody is comfortable in big groups though, so maybe another idea might be for some PWD who are willing to be used as "buddies" for others, possibly with initial contact made through HCPs? I've done that once recently and it certainly seemed to help the other guy a bit. Just a thought. Overall, great idea and great post!

  3. Sounds like a good idea but, as mentioned, not everyone in the waiting room would be T1 even at a hospital.
    Agree that it's scary that things are moving to GPs - they did this in my area a while ago and I found out more in 10mins with a visiting DSN that I had from the surgery in the previous 7yrs. Think "they" need to appreciate that T1 is more complicated than most HCP realise & we need specialist advice/support with realistic expectations of what's acheiveable.
    End of rant!!

  4. That's interesting... My hospital appointments have always kept T1s together. Having said that - I think I have much to learn from T2s who *only* have diet to use as a method of BG management. Their food choices put me to shame.

  5. At my hospital the Diabetic Clinics are held in the standard Outpatients area so there are people there for ortho/dermetology/pre-op assessments/dieticians etc all waiting in the same area.
    I think it would be good if hospitals/clinics tried to organise meet ups. As said I think other PWD are a great support network plus they just get it. It's nice to know it's not just me going mad. :)

  6. Hi Guys

    Firstly (and im sure this is not something you havnt heard before) what an amazing job you are doing, you really are providing a great source of information for sufferers of diabetes. I have read your blog(s) with great interest!

    To introduce myself...My name is Ben Kelly and I am a clinical diabetes health researcher based currently at Loughborough University and a fellow at Harvard Medical School (Joslin Diabetes Centre). My work in the main is trying to unravel the genetic complexities of Type 1 and Type 2 diabetes and to design from this both preventative and management programmes that use exercise as the corner stone of therapy.

    I am contacting you today for 2 reasons really. Firstly (and most importantly) I would really value your feedback on our most novel clinical concept. I have designed a genetic test that allows me to predict in diabetic populations, how effective certain exercise types will be, before anyone even steps foot near a bike or treadmill. Currently this predictor, predicts changes in aerobic fitness however we are currently finalising the development of 2 new predictors that will predict changes in blood glucose and insulin following any given programme of exercise. I have an original background in cardiology before moving to endocrinology and particularly focused my attentions on rehabilitative medicine. That said myself and my team at KellyMedical will take individuals through a fully personalised programme of exercise following the genetic test. I would really value your initial view on this concept and appreciate your thoughts regards its potential in the diabetic community.

    This start-up has won various awards and is currently in a national enterprise final (see link for more information)

    Id love to chat to you some more about this if of course you see fit? Equally it would be great if you would be kind enough to seek the opinion of other fellow diabetics.

    Thank you for your time and I really look forward to hearing your comments.


    Ben Kelly

  7. I have to say the reason I joined the DOC was that I could speak and own up to 'stupid' ideas without exposing myself or having to look anyone in the eye!
    I may not be charaacteristic, but I think getting people online is a gret start