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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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.

*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!

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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#DUKPC Professionals ✨Wishin’ & Hopin’✨ 

Have you ever wondered what would make the job of diabetes professionals easier, more fulfilling, help them achieve better results, or just make their lives more comfortable?  Or more fun?  Yes, me too – here’s a selection from the wish lists of some who attended the Diabetes UK Professionals’ Conference in Manchester this year!

“I wish every person with diabetes who wanted to see a psychologist (and equivalents) could access one. It baffles me why this isn’t already the case, given that the every decision to engage in self-care starts and ends with a person’s thoughts and feelings….PWD have access to every other member of the MDT….psychological skills are the missing pieces of the self-management jigsaw.” Dr Jen Nash, Clinical Psychologist, living with type 1 and recovered emotional eater  

“I wish that reimbursement for diabetes technology for those with type 1 in the U.K. was more freely available and that there was more focus on type 1, giving patients more choice.” Karen Baxter, UK Manager, Dexcom 

“I wish I could help those who want just one day’s break from living with diabetes 24/7.” Mark Evans, University Lecturer & Honorary Consultant Physician, Cambridge (@MEvansCambridge)

“I wish more people with diabetes had access to psychological and emotional support – people need to realise that diabetes is not easy to live with and these things are as important as the latest medicines or kit.” Simon O’Neill, Director of Health Intelligence and Professional Liaison, Diabetes UK (@simoneill)

“I wish everyone with type 1 diabetes could be seen by a team specialising in type 1 diabetes.” James Shaw, Professor of Regenerative Medicine for Diabetes & Hon Consultant Physician, Newcastle (@nucDIABETES) 

“I wish that we could genuinely have an honest debate about where the NHS is heading without political dogma or evangelism.” Dr Partha Kar, Consultant Endocrinologist, Portsmouth Hospitals NHS Trust & Associate Clinical Director for Diabetes, NHS England (@parthaskar)

“I wish that people with diabetes wouldn’t go it alone – they should ask for help (from peers, family or healthcare professionals.” Dr Sophie Harris, Innovation Fellow & Honorary Diabetes Registrar, Health Innovation Network (@sophiehampon)

“My wish is for our staff room to be filled with rescue puppies for a fun-filled break!” Laura Cleverly, Staff Nurse (@ninjabetic).    NOTE: After much jest with Laura on Twitter post publication of this, I’d like to remind folk of the well recognised benefits of animal companions for people of all ages and backgrounds, indeed some hospitals use them to improve patients’ emotional health and wellbeing, so a great idea Laura and thanks for your contribution! 🐶

“I wish hospital Trusts would fund more diabetes specilalist dietician posts.” Julie Taplin, Chair, British Dietetics Assn Specialists Group 

“I wish those stopping or never starting a medication that’s actually been prescribed for them would be completely open with their doctors – this makes consultations so much easier and helps build a good relationship.” Philip Newland-Jones, Consultant Pharmacist in Diabetes & Endochrinology, Southampton (@PNewlandJones)

“I wish I had more time and opportunity to hear the views and experiences of the widest possible cross section of people living with or affected by diabetes or the risk of diabetes. And if I’m allowed a second – that we could fund more superb research projects than we can currently afford to!” Chris Askew, Chief Executive, Diabetes U.K. (@ChrisAskewCE)

And finally, having thought about what might make my volunteering role better…. I wish all people diagnosed with any type of diabetes could see the benefits of attending self management courses, connecting with peers and getting inspired to take control of and embrace their diabetes as an integral part of who they are, without it taking over but just being a part of themselves they love, cherish and care for 💙. Lis Warren, Jurassic Type 1 (i.e. living with it for 52 years) and manic diabetes campaigner. 

Advice from #DUKPC professionals

Attending the 2017 Diabetes UK Professionals Conference as a patient blogger is a great experience.  I couldn’t possibly miss an opportunity to ask clinicians, researchers and other ‘diabetes people’ about their feedback and top tips for people living with diabetes!  So I asked for just one each and here’s a selection of their responses…

“Set realistic goals – there’s nothing wrong with getting there in baby steps.” Dr Mark Evans, University Lecturer & Honorary Consultant Physician, Cambridge (@MEvansCambridge)

“Always take at least some of your fast acting insulin before you eat.  Don’t leave it all until during or after your meal.” Professor of Regenerative Medicine for Diabetes & Hon Consultant Physician, Newcastle (@nucDIABETES)

“Be kind to yourself; diabetes is tough, so encourage yourself. If you find that hard, say to yourself whatever you’d say to your best friend if they were in your shoes. To mis-quote Mary Poppins: ‘a spoonful of encouragement helps the medicine go down’. ” Dr Jen Nash, Clinical Psychologist, living with type 1 and recovered emotional eater

“Control your diabetes, don’t let it control you.” Karen Baxter, UK Manager, Dexcom

Ask to see a dietician if you’re struggling with over eating, keep a food diary think carefully about WHY and not only WHAT you’re eating.” Julie Taplin, Chair, British Dietetics Assn Specialists Group

“Keep up to date and keep asking questions!  Things will change over time in diabetes care and the advice, medications and support you’re offered at one point in your life, will not be the same for ever.  You will always be the one that your diabetes affects most and you are the expert in YOU!” Rosie Walker, Director, Successful Diabetes (@SuccessDiabetes)

“Find others who have lived with it, listen to them and learn from them – they could be the best support you ever get.”  Dr Partha Kar, Consultant Endocrinologist, Portsmouth Hospitals NHS Trust & Associate Clinical Director for Diabetes, NHS England (@parthaskar)

“Don’t be afraid to experiment; experiential learning is at the heart of dose adjustment.  And integrate exercise into your daily commute.” Dr Sophie Harris, Innovation Fellow & Hon Diabetes Registrar, Health Innovation Network  (@sophiehampon) 

“When coming through emergency medical departments, if you’re well enough to be in control of injecting/blood glucose testing, then keep doing so and don’t surrender control as soon as you come in.  If you’re really poorly then we’ll be there to take the lead but otherwise, own your diabetes like you do every day.” Laura Cleverly, Staff Nurse (@ninjabetic)

“Keep it in proportion – I have diabetes myself but it isn’t what defines me as a person.” Simon O’Neill, Director of Health Intelligence and Professional Liaison, Diabetes UK (@simoneill)

“If you have any side effects from a medication or for any reason think about stopping it, have an open discussion with your healthcare professional first.” Philip Newland-Jones, Consultant Pharmacist in Diabetes & Endochrinology, Southampton (@PNewlandJones)

The NUMBER ONE sick day rule is NEVER, EVER STOP insulin if you have type 1 diabetes.  We have had some very sad events because this advice has not been followed or people have been told otherwise.” Dr Gerry Rayman, Consultant Physician & Diabetologist and developer of the National Diabetes Inpatient Audit, Ipswich Hospital NHS Trust (@DrGMagic)

And finally, my top tip – and one I’ve blogged about – is to participate in research at every opportunity!  It’s a really great way of learning lots about diabetes, getting better motivated to look after yourself well (esp when the going gets tough), meeting inspiring academics and clinicians, helping others who will follow us on the diabetes journey, meeting other great people with diabetes and if you’re lucky, you may even get an Amazon voucher for your trouble!  Win, win 😀