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 😀

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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

Participate in Research – it’s a WIN, WIN!

Some years ago I stumbled across the web site of the National Institute for Health Research (NIHR).  They were looking for people with type 1 diabetes to join an advisory group to comment on a microprobe blood glucose sensing device, which sounded intriguing, so I volunteered. Although I’d had type 1 diabetes for approaching five decades at that point, surprisingly this was the first time I’d actually thought about participating in research.  Continue reading Participate in Research – it’s a WIN, WIN!

Reflections on 50 yrs with T1 Diabetes 1965 – 2015 (first published Oct 2015)

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After living with Type 1 for 5 decades, this year I’m celebrating becoming a Diabetes UK and Joslin Medalist.  Throughout the year I’ve been reminiscing and reflecting on how things have been and at times, wondering why and how I’ve been so lucky to arrive here!  I’d like to share some thoughts that have helped me stay optimistic and well in the hope that others may discover things to help them on their way.  I’ve made plenty of mistakes, so feel incredibly privileged to be a Diabetes Medalist, but thankfully learning from errors has usually spurred me on, so…   Continue reading Reflections on 50 yrs with T1 Diabetes 1965 – 2015 (first published Oct 2015)

Loving and learning from the #DOC (first published 2014)

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Although T1 for 49 years, I’m relatively new to the DOC and am still finding my way on Twitter. Looking back, I knew of just one person with diabetes at school but I don’t recall EVER talking about it to other T1s during my first two ‘diabetic decades’. One or two blood tests and clinic visits per year in those days – you had to wait over 3 hrs at the clinic for the result – and that was it. And I don’t recall ever talking diabetes with my GP. My control as a teen was poor, due mainly to erratic eating behaviour – but that’s a (long) story for another day… I’m really not sure how I’ve turned out relatively healthy, but since joining the DOC I’ve now read about a ‘protective factor’ that blesses some of us with few complications https://www.joslin.org/news/diabetes-veterans-may-show-ways-to-prevent-complications.html. This is just one of the hundreds of new things I’ve discovered from the DOC – I’ve learned so much!  Continue reading Loving and learning from the #DOC (first published 2014)