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A passion for research participation

In the past 19 months I’ve had the honour and pleasure of being a member of one of Diabetes UK’s seven new Clinical Studies Groups (CSGs) which were set up to identify research gaps and prioritise how they might be filled with new studies.

I was fortunate to join my first choice, CSG5, which aims to improve our understanding of the long-term self-management of Types 1 & 2 diabetes by looking at diet, exercise, glycaemic control inc hypoglycaemia & hyperglycaemia, education and peer support, along with (importantly!) other more informal learning and support options. It also covers mental health, psychological and emotional support, and behaviour change. All topics I’m obviously interested in! Continue reading A passion for research participation

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*Holy cow, whatcha doing’ to me? #HAW17z

Once upon a time there was a woman with type 1 diabetes using bovine insulin who was planning to start a family. Having experienced two miscarriages (attributed to an immune system issue), she worked hard to avoid hypos and hypers so that this pregnancy would succeed.

Along came human insulin and her consultant advised a swap from the bovine insulin she’d used since diagnosis in the 60s. At that time it wasn’t understood that this change should be managed carefully, that bovine insulin stimulated the production of antibodies and the new insulin, which didn’t, would cause insulin sensitivity to rocket resulting in unpredictable hypos.

The woman began having frequent, severe hypos which came on rapidly and without warning. She collapsed frequently, she had an accident in the fast lane of the M1 (no injuries other than a damaged police car bumper caused by braking in front of her car to halt progress). She lost her driving licence. Many others suffered similar frequent, severe hypos and lost their hypo awareness.

Patients protested, campaigns began, inquests were held for those who died from severe hypos and court cases followed. The New Scientist described the situation vividly in this 1989 article.

The woman was afraid so went back to bovine insulin and remained on it for nearly 20 years, achieving a successful pregnancy. She then relaxed her glycaemic management and lived relatively well with her diabetes, despite less than perfect HbA1c results. CGM was the real game changer some years later, managing the hypo unawareness and the hypers better than ever before.

When persuaded to try a new analogue of human insulin in the 2000s, she was reluctant. She knew that the transition from bovine insulin had now been rigorously studied but the cause of the problem wasn’t identified for some time. No responsibility was accepted for the sorry saga that had blighted so many lives. As ever with diabetes, some patients blamed themselves for their ‘poor management skills’ and for getting things wrong. Same old story.

Why am I telling this story? Because it’s Hypo Awareness Week 2017 and because bovine insulin will shortly be withdrawn and I’m concerned and fear for the wellbeing of the last 100 or so people using it. They’re probably elderly, may be averse to a treatment change and they are possibly being cared for by non-specialists who do not read the type of excellent guidance from Imperial College in London, published in Diabetes UK’s UPDATE Fact File 32 (Bovine insulin Factfile – Sept 2017). They won’t read this blog, nor will their clinicians.

I’m also writing because despite penning numerous letters at the time, I need to get it off my chest! I’m grateful for the Fact File and for what I’ve recently learned about insulin development from the wonderful book Diabetes – the Biography by Robert Tattersall (see photo extract below). I now fully understanding what happened to me and why. But despite an eventual smooth transition to analogue insulin, it still hurts to reflect on what happened. Others must not be allowed to suffer life threatening hypos when they move to a different insulin.

I hope GPs and CCGs will examine prescribing records, identify the very vulnerable group of patients still using bovine insulin and ensure clinicians caring for them are vigilant, supportive and wear kid gloves with these patients this winter. 

*Holy Cow was written by Allen Toussaint and sung fabulously by Lee Dorsey (1966)

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Nov ’18 UPDATE below on availability of Bovine Insulin in the UK.

Cover Girl!

Well I’ve been a member of Diabetes UK for (most of) the last 52 years and I’ve finally got featured in Balance, which feels really weird, but also very satisfying as I’ve written numerous letter which haven’t ever been published!

I’ve read this magazine for decades and seen it go through many changes – so wish I’d kept my old copies now.  I’m told you can see them in the British Library.   I may pay a visit there one day to reminisce!   Continue reading Cover Girl!

Hypos, Lifebuoys and HARPdoc

When I look back, there’s one vivid moment in 2016 when a thousand pennies dropped with a massive thud. I was watching a presentation about research into restoring hypo awareness.  The slides made me reel as I heard someone describing me and my behaviour in minute detail.  I imeddiately recognised I had a long standing job to tackle.

I left the auditorium in a daze realising that my difficulties with severe hypos over many decades may not be solely the result of my inept type 1 management, they could also be a problem related to my way of thinking and to many years of soldiering on with diabetes.  Continue reading Hypos, Lifebuoys and HARPdoc

T:Slim X2 – early thoughts

After almost 5 years on the trusty Animas Vibe, I was fortunate to move to the Tandem T:Slim X2 insulin pump in April 2019. I’d been hankering after it for some time, mainly because it incorporates Dexcom CGM and is beautifully slim – designed to fit the small Levi’s waistline pocket.

My comments are those of a relatively inexperienced pump user, but these are my personal pros, cons, plus some tips to avoid pitfalls.

First the good stuff

  • No more huge lumps and bumps in pockets – and it sits far more comfortably in a bra than other chunky dinosaur pumps!
  • As with the Vibe and Dexcom G4, there’s no need to carry a receiver or phone if using Dexcom G6 with the T:Slim. The version I’m using links with G5 and will be linked to my G6 and Basal IQ (low suspend) some time this autumn. Control IQ (for managing highs) will hopefully arrive via an online link some time in 2020. My preference is to carry as little diabetes kit as possible. (NB ditching the phone will encourage less use of social media, so is eagerly anticipated by my other half!)
  • No need to wait the usual 4 years for pump updates – an outstanding 5* unique feature for me, particularly as tech developments are now arriving fast and furiously.
  • The screen is legible in sunlight – the Vibe was DREADFUL as a CGM receiver and was for me, a keen walker with very poor hypo awareness, a significant safety hazard when outdoors.
  • The touch screen navigation, with speedy access to all pump functions is great. No more scrolling down several menus on the Vibe for different functions.
  • Temp Basal rates can be set in very precise minute by minute segments starting at 15 minutes, am using this repeatedly to really great effect.
  • Basal profiling is very comprehensive: using a copy and paste-like feature, it’s super simple to create profiles with different carb ratios etc.
  • Insulin delivery is very slow. I often found boluses hurt with the Vibe, even using short cannulae on the slow delivery option. Tslim is totally pain free.
  • I rarely use a bolus calculator, but the screen design for this feature is extremely neat and user friendly.
  • Finally, the design is elegant, even beautiful – the B&O of insulin pumps! This really matters to me, as does the great choice of pump skins available from PumpPeelz.

And the less positive stuff

  • The cartridge fill is very fiddly, you have to withdraw air bubbles from the flexible plastic ‘insulin sack’ with a syringe (part of the consumables) before injecting the insulin into the vacuum you’ve created. All a bit of a faff. I’m now totally competent, but it took a few weeks practice to feel this way. The flexible sack was apparently designed to allow a much slimmer pump profile.
  • As my insulin sensitivity is high (12-18u Total Daily Dose) the 300u cartridge and the minimum ‘fill’ is far too generous. Minimum recommended fill is 95u but if following the 3 day change, I’d have to throw away many precious insulin units if recommendations were scrupulously followed (conversations with T:slim users in the USA indicate many people use the same cartridge for 6-7 days to avoid waste!). In theory, I’ll need to order double the amount of insulin using this pump, though my needs are low, it shouldn’t cost the NHS a great deal I’m told! In practice, I do regularly move my steel set after 2-3 days and keep using the insulin up and I’ve not had any problems so far (I keep a very close eye on CGM fluctuations which might indicate lack of insulin potency).
  • Every bolus initiates a buzz and soft vibrate, followed by a second buzz on completion of delivery, meaning you can’t bolus silently if you notice BGs rising at the theatre, a concert or other very quiet environment. A bizarre feature IMHO, presumably included to reassure. I’m HUGELY embarrassed by any noise during performances and may even consider removing the pump if I’m performing myself. Unfortunately my ears are sensitive and this feature can’t be silenced, but it is pretty quiet so hopefully it’s only me that’s bothered by this!
  • The tubing has a ‘pig tail’ – see top photo – that can cause a lump under tight clothing if not carefully placed.

And a few tips:

  • I’d strongly advise ensuring you put T:slim back to sleep after any procedure. Being slapdash about this, I’ve had many false alerts saying an action hadn’t been completed when I’d not been aware I’d started anything. Seems very easy for buttons to get pressed when putting pump back in its hiding place!
  • When replacing the cartridge, be super careful not to mix up the newly filled with the empty one. I once put the old one back on the pump – doh…🤦‍♀️

So I’m really loving my T:slim X2 and will update when I’ve tried Basal IQ in the coming months – and Control IQ in 2020.

                                                         My fab PumpPeelz!

 

Positives of living with diabetes

I get very sad reading so often about the possible long term detrimental effects of diabetes, as well as the everyday things that can – if we let them – bug us and get us down.

Am posting this as it’s one of the most wonderful, life affirming statements I’ve found online and I hope that others will grab these positives and hang on to them throughout their lives with diabetes! 💙☺️💙

61 years of living well with diabetes: Pete Davies

I am very proud to call Pete my friend. We met via a mutual acquaintance on Facebook, then shortly afterwards in person at a Diabetes ‘Meet Up’ in a London pub. We soon discovered much shared diabetes history, but also a deep love of classical music and of singing.

I have since joined a choir that Pete has been with for many years, and we now sing together each week and in concerts, share friendship and laughs after rehearsals and we’ve also walked together in the JDRF London Bridges events.

Pete has shared his inspiring story of living with Type 1 with Gavin Griffiths, AKA Diathlete, and I’m delighted to share a link to Gavin’s blog with Pete here to help inspire us all. Thank you for all you do Pete.