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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. 

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Getting what you need

There are dozens of blogs on this topic – we all want and need different things at different times in our lives.  So finding a doctor  with whom we’re happy ‘for life’ is a challenge we tackle repeatedly.  (I’ve already outlived the first two specialists I had in my teens and twenties!)   Here are some blogs I’ve found interesting and enjoyed on this topic.

Guilt: a major Diabetes Complication   A blog from A Sweet Life (USA based blogger) that didn’t exactly ‘help’ me but made me realise I’m not alone in feeling an incredible burden of guilt around my diabetes.  This extends to every aspect of live from what my care costs the NHS to how it affects my family.

By Appointment…  The Grumpy Pumper shares how for him, its all about feeling empowered.  His consultant “…is there to consult with, advise me, and, in my opinion, learn from my experience!   Not to tell me off or judge.”

A Patient’s Perspective – Dancing the Dance – written anonymously and published in the British Medical Journal, this one’s from someone who is well informed and really only uses their appointments to access the tools they need on a day to day basis.

Dear Doctor  – moving collection of letters from Ninjabetic to doctors at different times in her life.  “You looked at me and said the words So you’re my DKA?’.  No. I was not your DKA. I was your patient, with a name that was written down in front of you and you didn’t have the decency to call me by it.” 

Better Clinic Appointments from INPUTthe diabetes tech patient advocacy service, has some great practical advice about ‘changing the conversation’ and getting the most from your hospital visits.

Hand us the Microphone  – blog from Renza aka Diabetogenic in Australia making the point that hearing first hand from people LIVING  with diabetes can help healthcare professionals design and improve and services. As one with a drive to campaign for those without a voice, I  feel this one acutely. Far too much ticking of boxes when I enter the room, but then not actually listening or bothering to ask others.

INPUT – diabetes tech advice

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Lesley Jordan, INPUT’s Chief Exec, talking to Dr Partha Kar

INPUT – the UK diabetes technology patient advocacy charity with a fantastic web site full of reliable, detailed info about access to insulin pumps and CGM. (NB in 2018, INPUT merged with JDRF UK. The web site remains separate fro the time being.)

It also includes  interpretations of NICE guidelines, comparisons of different kit, lots of other advice and regular social meet ups for those wanting to chat with others before taking the plunge into using a pump or CGM.  Highly recommended.

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 😀