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

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.

T1 Resources web site

T1 Resources – rated, reviewed and reliable – is a new web site for people with type 1 and for clinicians.  

It’s a selection of online resources to make type 1 a little easier to live with, is checked and reviewed by healthcare professionals and people who have diabetes.  You can search and filter by topic, channel and source key words and there’s also hints and tips for those new to social media.

Here’s a Blog about the web site which is also a good read!

Sugar Surfing

sugarsurfing

Sugar Surfing – the Facebook group hosted by Kevin McMahon and Dr Stephen Ponder that posts ‘lessons’ to nearly 5,000 followers on how to manage blood glucose using a continuous glucose monitor (CGM).  NOTE: You need to have a BG measurement convertor to hand as they use mg/dl and not mmol/l like we do in the UK!  

The book can be purchased here on Amazon.  

Diabetes Clinical Leadership Group

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London Diabetes Strategic Clinical Network – I’m a member of the London Diabetes Clinical Leadership Group and co-Chair, along with Melissa Holloway, of their Patient Experience work stream.

Resources here are mainly for clinicians, but there’s also an INFO-GRAPHIC showing results of a London patients’ survey with some interesting data about where people find support.

Harrow Diabetes UK

Harrow Diabetes UK Support group – my local support group, whose web site I edit.

Alongside the main group, four of us with type 1 (pictured here) also run ‘satellite’ Type 1 Meet Ups every 8 weeks in a Harrow pub (dates/venue on the web site under EVENTS – all welcome wherever you live!)

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Matt, Ranna, Philippa and Lis