All change, this is type 1 diabetes..
Its just over 5 years since I was diagnosed with Type 1 diabetes, earlier in the year I thought it be good to tap out a few articles on what I wished I had known 5 years ago. So here goes – to kick off, what changed.
First of all after being diagnosed I found that some people just didn’t want to tell me what it meant, occasionally but perhaps not deliberately hiding behind the technical language used – since that time I’ve met many type 1’s who a year after being diagnosed still didn’t know the difference between Type 1 and Type 2, more so those who are diagnosed later in life. There is no good time to be diagnosed with T1 although I’ve often felt an impatience and wanting people to tell me what this is about. Conversely that dancing around what it all means often seemed to jump to extremes of “you may die or lose your sight unless you do something”.. OK what? well you know improve your blood sugar control.. OK how do I do that.. you need to live like a hermit, drink herbal tea and eat nuts. nice.. hope you are hearing a sense of cynicism.
What has been at the heart of my diabetes care is the NHS – I am truly grateful to this system. Often I feel it exceeds my expectations, yet often it lets the diabetes community down – its also hard to watch money wasted when the reason for not offering a treatment (e.g. CGM) is money.
I’ve often quipped that had I’d been diagnosed a few years before, my business of running events would have collapsed – if that had happened I would have put the blame firmly at the foot of the NHS not being Type 1. In that first year I was often heading to an appointment once a week – nutritionist, consultant, diabetic nurse, chiropodist, eye examination, practice nurse, a year later 5 day DAFNE course, and a pump clinics. I was often led to feel that the people I was seeing their time was more important than mine and I had to wait.. yet it was crippling to take 1/2 to a full day off – often paying someone to do what I was not doing. The harsh reality is that I felt 1/2 of those appointments were a complete waste of time, both ill prepared by the person seeing me and often by people who didn’t know the subject enough to offer credible change to my condition. Often the motivation was a tick box exercise and if I didn’t help them tick the boxes I’d be berated for failing to taking my condition seriously.
The “clinic” process used is just not dynamic enough for diabetes treatment, it feels like the “industry” is just trying to make what it always has done more efficient rather than thinking differently. A good friend who is type 1 at a recent presentation said that in the last 10 years he had seen 20 professionals and in the case of all but 2, he know more about diabetes tech than they did. It is a shocking statement.. but one that I recognise, where diabetes tech is not seen as a credible solution but rather a threat – it should not be OK to be working with Type 1 tech and say “I’m not so good on computers”.. imagine if someone said that in any other part of care in the NHS.
In 2013 I was fortunate to find myself with an insulin pump. The irony when I look back, is that my body was still producing insulin – only a little, often referred to as the honeymoon period. In the 6 months after finding myself with a pump – my blood sugars didn’t get better they got worse, now I realise why, I was trying to set up this great little machine whilst shooting at a moving target. At my 6 month review the care team behind my pump threatened in no uncertain terms that they would take my pump away unless I improved. The pump had changed my life – I was running with confidence that I was not going fall over a hedge but I was struggling. I’d also dabbled in using CGM sensors – often extending them over 2 weeks and putting them on my arm where I found them more reliable. The response was horror by my team and that this was very bad for my care and I could get an infection (since that time I’ve never heard of an infection from a CGM). No question about it, it was a desperate time – I was also itching to keep running yet confused.
“My Dirty Little Secret” A friend of mine who was in to endurance events had sought the help of Ginger Viera (author of the diabetes experiment), and I wondered if this way of working would help me out of my quandary. I saw it a bit like a coach – a quick skype call with Ginger and she put me on to Integrated Diabetes Services (IDS). It was not deliberate but I found myself working with Jennifer Smith at IDS to help set my pump up – initially a 3 month arrangement with unlimited email and a few skype calls. I kept it up for a year, although without question that 3 months had by far the biggest impact on my diabetes care in 5 years.
Jenny took a methodical approach to setting up my pump, and we were often in daily communication as I took on basal testing, adjusting my background insulin. moving on to carb ratios which I found were different throughout the day. The emails were often very brief.. Soon after I moved on to using the Freestyle Libre – whilst it was not available in the states, Jenny was more than happy to work with the data this produced and make the adjustments needed. For our skype conversations we would set out before by email what would be discussed – it was structured and always had outcomes that I had to work to and get back to Jenny often with days or weeks (not my next clinic in 6 months). Jenny was also able to access my pump settings and data online. This was her world and clearly she nimbly switched between pumps, sensors and a variety of clients.
I’ve never met Jenny – one day it be great to say thanks to someone who has arguably had one of the greatest impacts on my diabetes life. It did cost me money, around £400 – arguably that was money well spent, its saved Open Adventure that money.
Earlier this year the opportunity came about to change my clinic due my other complications with hypothermia. I jumped ship pretty quick – I need to be challenged with my diabetes not told off or nagged. I’m hopeful for the future, I’m pretty self-motivated, it is in my interest to get it right.
The purpose of my post was to challenge my NHS friends in the way they work – perhaps more technology nimble staff to work with T1’s and pumps. To my T1 friends – sadly if your local clinic is not working for you – you need to move clinic or find a different way of managing your condition. Life is way to short to wait for a consultant appointment in 6 months time and to see how it goes when you come back in a year.
