The Big Interview – Sue Marshall
Sue Marshall has type 1 diabetes and is the founder of Desang, a website, range of kit bags and magazine all dedicated to making life easier for people with the condition.
What’s the biggest challenge of living with type 1 diabetes?
It’s hard to define the biggest challenge. Obviously, there are a few. Staying organised with testing, supplies and food, but also ‘keeping our head above water’. Diabetes doesn’t go away and you have to make peace with it in order to get the best out of your life with it.
What’s been your greatest achievement in the diabetes community?
I hope that it’s been providing useful information and interesting articles via the online magazine that I edit. The issue published in January of this year was the 75th, having done roughly 12 issues a year since the end of 2011.
What’s Desang, what does it mean and how did you start it?
I’d started off designing and selling a range of diabetes kitbags. That gave me a user base of ‘kitbaggers’ that I started to communicate with via a newsletter and it grew from there. I’d had a career in publishing, mainly editing trade journals. I started the kitbag range with a website to sell them from, and realised I had to feed Google with information in order that people could find the kitbags. I focused on writing about diabetes kit, as that was what went into the kitbags. And I was interested in it – I still like knowing what’s out there; I firmly believe that if you like your kit then you will use it. Back then, and we’re talking about 15 years ago, there were some individual product websites, but nowhere central where you could go to see all the options. So that was a gap I set out to fill.
Desang more or less means ‘of blood’. I wanted a logo I could print on the outside of the kitbags but did not want the word diabetes in it. The kitbags were like Filofaxes for the diabetic lifestyle, keeping the bits needed to run that side of your life in a suitable bag, containing items for blood testing and injecting insulin. I felt that most people would not want to broadcast their medical condition with the word itself being slapped on the exterior of the bags, I know I didn’t.
Tell us about the Desang Diabetes Magazine?
Having done a few newsletters out to kitbag owners, I realised that there was a lot to cover, and the newsletter was not adequate. It seemed to me that there was an opportunity for a magazine about living with diabetes incorporating news, features, interviews, kit listings and also food information, as understanding how (and how fast) food gets into your bloodstream is so core to good control. And I like food!
Why did you start your Desang diabetes kitbag range?
I started it because I had the need myself. I used to travel a lot with my work, attending conferences and going to meetings in cities and business parks across the country. I had to be organised – not just test strips, lancets, needles, insulin pens but also spares. I’ve had blocked needles, or used the last test strip and I was miles from home. I’d been using a washbag for years and just wanted both sides of the equation – testing and injecting – all in one, safe place, and a place that would not be out of place in my working environment. Not finding anything suitable when I looked, I thought I’d have a crack myself.
You have published books, tell us more about your publishing career?
Well, only one book. I was approached by a publisher to add a diabetes book into their Need To Know series. As I had lifelong experience of diabetes (diagnosed just before my 5th birthday) and a career in publishing magazines, I thought I’d give it a go. Felt like an enormous task at the time, but I’m glad I did it. It wasn’t written in a medical way, more a day-to-day overview of what it involves including counting carbs, testing, and how to use the support structures that are out there to keep yourself engaged with it and on top of it, not letting it get on top of you.
What’s your one message for healthcare professionals?
Don’t give up. We all know the NHS is under siege, and that technology is changing all the time in the diabetes sector. It’s a unique care sector – it’s not normal nursing or doctoring. We don’t come into the system ill and go home well. It’s an ongoing relationship and one that needs support, education and product knowledge as well as care and compassion. It’s a big ask, on both sides.
What advice would you give to someone newly diagnosed with type 1 diabetes?
My advice would be for them not to fear it, or be angry with it. Show it some respect and learn to live with it. I say show it some respect because I think you have to acknowledge you have had a diagnosis, and work around it. Use blood testing to help your control. Learn a bit about how foods absorb into your blood and affect your blood glucose. I always wanted to get on with my life, but a bit like an uninvited houseguest that would not go away, I had to find a way to accommodate it. I stay organised, stay interested in kit, control, food and plod on.
What are your future plans for Desang?
The main plan is to keep up with the news in the diabetes arena and do good coverage of the host of technologies out there for readers of the online magazine, from blood testing to insulin pumps, CGM and the concept of an artificial pancreas. I’d like to grow the readership, but diabetes is a busy space so I have my work cut out for me. I have lots of ideas, and as I’m always saying, I’ll get there in the end.
What is the future of diabetes care in the UK?
Gosh, that’s a big question. My hope is that there will be faster, easier access to pump and CGM technology for those who need it, as well as to education courses such as DAFNE and DESMOND. I’d like to see more type 2s being encouraged to test, and overall I’d want to see a future where investing in technology and education for diabetes control is seen as a vital investment, not the way it is currently seen as a short-term cost.
With education and good kit, us diabetics can save the NHS the very real costs of the poor understanding that leads to bad control and costly ‘complications’. It’s the bad control that costs, not the tools and support needed for good control. In the scheme of things these tools are definitely affordable. We need to raise our voices to get that message through once and for all.