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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

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.

Food, feelings and weight #DUKPC   

My first workshop at the 2017 Diabetes UK Professionals’ Conference entitled Non-Hungry Eating rang loud bells as I’ve had significant ‘food issues’ myself over the years.  I wanted to hear what advice was being offered to clinicians, plus I’m really interested in the type 2 National Prevention Programme as I have a friend who struggled with overeating for years before reversing her type 2 following bariatric surgery.

Led by clinical psychologist Dr Jen Nash of Positive Diabetes (who also has type 1 and had issues with her own eating) and Rosie Walker, a diabetes specialist nurse from Successful Diabetes, the workshop explored how to broach the subjects of overweight and overeating when people are reluctant or unable to acknowledge it’s a problem.

They looked at ways to remove judgement from conversations – thankfully a recurrent theme of the Conference 👍.  Jen and Rosie gave examples of sensitive language to encourage ownership of overeating, explored the shame and guilt overweight often brings and looked at triggers for non-hungry eating or bingeing.   The links with pre-diabetes and type 2 are obvious, but other presenters also described the increasing prevalence of obesity amongst type 1s, with its consequent risk of blood pressure and cardiovascular problems.  According to a slide shown at a later presentation, the UK is 2nd in the European Obesity League (OECD Health at a Glance 2014).  IMG_4692.jpgWe discussed what Jen called ‘Conversation Stoppers’, how many overweight people claim to eat little, to come from a family of ‘large’ people or to lose weight but regain it easily despite eating little.  It’s a bit like alcoholics: only when the problem’s acknowledged can change and recovery begin.

Jen and Rosie described ‘normalising’ overeating to help their patients open up and explore why they do it.  And when people are not ready to discuss it, that’s fine, Jen leaves it open so they know she’s willing as and when they want to tackle it – all very reassuring I thought.

I was grateful that they emphasised how non specialists – practice nurses, GPs and hospital clinicians – should act as signposts and acquaint themselves with referral pathways to psychological support.  Clinicians often see weight as the problem when it’s really a symptom of stress that once treated, leaves the way open to address the eating and weight comcerns.  Being overweight is a very complex problem and is NOT simply a matter of weak willpower.  But the sad fact is that access to specialist support is at best, patchy.  Many of us with diabetes need psychological skills along with the diabetes education we get to manage this elephant in the room: food.
IMG_4690.jpgAs a clinical psychologist at the Joslin Diabetes Center in the USA said Teaching a person how to be a ‘good diabetic’ is akin to teaching them how to have an eating disorder.  Too true.  Thank goodness it’s more widely acknowledged now – when I sought help with crazy eating behaviour as a teen with type 1, I was given another carb counting list and sent packing…

It’s reckoned there are 30+ reasons we eat and most are unrelated to physical hunger.  They involve what Jen called heart hunger (emotional eating) or eyeball hunger (that looks SO good!).  Almost all of the 50+ clinicians at the workshop said they regularly ate when they weren’t physically hungry.  It’s pretty normal – we all do it.  IMG_4691.jpgFood makes us feel safe, it can act like a sedative, calming us down when stressed.  We sometimes eat to solve problems, but create a bigger one in doing so.  I can vouch for the fact that robust psychological skills are needed to overcome overeating!IMG_4693.jpgIf eating inappropriately large amounts, whether to manage feelings or not (some do eat for other reasons!), it can make diabetes management very challenging.  And if we’re overweight, we’re more resistant to insulin whatever type of diabetes we do or don’t have.   Another presentation by Prof Roy Taylor made a strong case for type 2 prevention via strict calorie reduction on a liquid diet, though he did add that a great deal of ongoing support was needed for people to stick to the regime used in his research.  It was mentioned that growing numbers of overweight type 1s are now taking Metformin alongside insulin to improve insulin absorbency.

Many other presenters spoke about food in relation to weight.  A stand out message for me came from Dr Nita Forouhi who, after alluding to every eating style in the dieter’s library, said the only diet that works for weight loss is the one that works for you.  She added that all calories are not equal – for long term health benefits it’s vital to consider nutritional variety and quality.  So that’s a ‘no’ to the beer and broccoli regime.

And finally, I must mention a talk given by Richard Welbourn, a bariatric surgeon who presented a very compelling case for weight loss surgery.  I love his slide Surgeons are Heroes.  IMG_4501.jpgHe claimed it’s the only treatment that ticks all the boxes in terms of weight loss, type 2 prevention, management and cure, behaviour modification and importantly, improved quality of life for nearly all who undergo procedures.  Most of his patients had tried to lose weight for years with various interventions, but hadn’t managed it.  He concluded there is no ‘recommended’ procedure – all have risks and benefits that need careful consideration on a one by one basis.  IMG_4500.jpgAs Richard’s slide shows, NICE guidelines are in place for those with type 2 but sadly, though there are thousands waiting who could benefit, the barriers to accessing help – lack of belief in the financial and clinical benefits and lack of finance – remain.  He sounded like a fighter to me, so watch this space…

Slides (with exception of last two): Dr Jen Nash http://www.EatingBlueprint.com    

Other helpful resources:        Food Psychology – Dr Jen Nash 

Dr Jen Nash’s Diabetes UK page on non hungry eating

Prof Roy Taylor’s Diabetes UK page on diet and type 2 diabetes

Prof Roy Taylor on reversing type 2 diabetes 

Beating EATing Disorders  B-EAT 

Diabetics With Eating Disorders (DWED)

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