Anne Cooper has lived with diabetes most of her life, she has seen technology revolutionise care but still wants more to change
I’m now 47 and was diagnosed with type 1 diabetes when I was 16 years old. Most of the time it’s fine and its just part of the way things are – in truth I’ve had diabetes longer than not, so it’s the way life is.
Back in 1979 …
When I was first diagnosed there were no specialist teams. It was just you and a doctor, who you saw maybe a couple of times each year. You relied heavily on information from organisations like Diabetes UK. I can still remember the stall that was always in the clinic with leaflets and a cookbook, run by what seemed to me nice but very old people (I was 16 remember!).
Very little information was available. The internet didn’t exist, instead I relied on books from my local library. Most recommended imposing a strict lifestyle with set meal times, set meals and certainly no cheating. Not so easy for a very young woman who is just launching herself into the adult world.
Then there were the injections. It makes me smile when I explain to some of the nurses now. I can vividly recall the syringes, glass and metal, which were kept in surgical spirit and boiled in a pan in my kitchen every now and again. The needles were not disposable and metal got incredibly blunt and injection time wasn’t great. People who have lived with diabetes for as long as I have will, I’m sure, vividly remember the pale blue boxes we used to keep our syringes in!
Technology has brought changes
Over time things started to change. The first technology that had a revolutionary effect on my life were multiple injections and the syringe pen. Can you imagine? I no longer had to use the horrid needles and the move to multiple injections might horrify some people but made me feel so much better. Not only that, the device itself no longer looked ‘surgical’ – it could be mistaken for a pen in my handbag.
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Then, of course, we started to see improved blood testing equipment and we were expected to keep a paper diary. I was never good at testing - another reason why I feared going to the hospital. ‘Anne do you have your test results book?’, ‘Er, no, I’m sorry doctor but I left it at home today!’.
The new generations of testing equipment are streets ahead of the blood-spot-stained books we were expected to carry around. They can store lots of information about what you have eaten and your average results.
But probably the most important technical innovation for me, and this has really changed my life, is my insulin pump. A tiny syringe driver that gives me insulin 24/7, based on a regime I can programme myself. My testing meter can also send a message to my pump so the tiny computer in my pump can tell me how much insulin I have had, daily averages and also my average blood glucose calculated from the tests I do. For some patients the pumps can be programmed to deliver insulin calculated from the test results – how cool is that?! As far as I’m concerned, from where we were 30 years ago, this is like rocket science!
A revolution in care
Care has improved too. I now feel I have a more equal partnership with specialist nurses and doctors. The tests we can do to monitor my long-term well-being are strides ahead of where we were before. My diabetes nurse texts me my results to my iphone and I can then take appropriate steps to adjust my dose if I need to.
The internet has also created a new revolution for patients with long-term conditions. I can access high quality information from a variety of sources but more recently it has also created, through innovations like Facebook, the ability to network with other people with diabetes.
I am now a member of a facebook insulin pump group. We provide ad-hoc advice to new users as well as networking with people with diabetes in the United States and finding out more about new equipment and innovation.
I am also keen to have a summary care record. If a patient like me was to turn up at accident and emergency, staff probably wouldn’t have a clue what to do with my pump as they are still not common in the UK. They would probably remove it – which may be in certain circumstances the worst thing they could do!
So I will be visiting my GP to make sure my record gives plenty of information about me, more than the minimum that has been agreed – I feel that’s the right choice for me.
What does the future hold for patients like me?
I want technology to be better linked together perhaps via something like my iphone, which I always have with me. I have an applet for my blood sugar results but it doesn’t talk to my meter or my pump. I know the technology exists to do it but it’s not there yet.
I want to communicate differently with my care team, so I can avoid unnecessary visits to the hospital or doctor (and probably save them time too). I want to be able to email my specialist nurse, this way I could take even more control of my own care.
I want even more information on the internet. The information on NHS Choices is very generic and not aimed at people who have a long term condition already – it’s just not deep and detailed enough. I need to be able to manage my diabetes myself and not depend on other people to tell me what to do.
I want the new education programme for people with diabetes to be available as e-learning so don’t need to take time off work. These days you can achieve collaboration with other patients through different technologies, we don’t have to be all sat in the same room.
Finally, I want healthcare professionals to respect the fact that I have lived with diabetes for 30 years and, so, in that time have quite a level of expertise in my own right and that they shouldn’t feel intimidated by that but thankful and look to being my partner in care, not the headmaster!