Lesley Jordan
INPUT patient advocacy
While tech devices offer people with Type 1 diabetes new management tools, knowledge is still your best friend, says this patient advocate.
“The majority of care for a Type 1 is self-care,” says Lesley Jordan of INPUT, an organisation which helps people access diabetes technology in the UK. “Carb-counting, blood glucose monitoring – it’s relentless. Day in, day out, I’m making clinical decisions that can have a significant impact on my health.”
Diagnosed with the auto-immune condition in 1968, Jordan has been wearing a pump (about the size of a pack of cards) to administer insulin for the past 15 years and says she would rather give up her glasses than the device in terms of convenience.
“But not all tech is right for everyone. Some people do well on injections, or don’t like the idea of something attached to them – teenagers who feel a pump signals there’s something wrong with them, for example.”
Technology has also brought sub-cutaneous sensors and continuous glucose monitors which can alert you to glucose highs and lows. “You can get data fatigue,” says Jordan. “First you need to learn how to best manage your condition. If you do need and want a device, go on to learn more about how to get best use from it. At INPUT we empower patients to do their own advocacy, articulate their needs; we encourage them to be partners in their care rather than passive recipients of instructions.”
She also encourages people to access the insulin training courses available. “Insulin is a powerful drug: just giving someone insulin and expecting them to get on with it is like sending someone who’s had no driving lessons out onto the road in a car. Even if you’ve had Type 1 for a while, you’ll benefit – most people say they wish they’d done it years ago. Knowledge is power.”
