DUK says nine out of 10 parents unaware of type 1 symptoms

fourEveryone’s second favourite diabetes charity – Diabetes UK  – delivered their latest press release round to my kennel today. They’re launching a new campaign banging on about the “4 Ts” of Type 1 diabetes symptoms. You can read the full press release below; for those too lazy to read, there’s a lovely animated version on YouTube; I’m off to go and chase next door’s cat. Woof!

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Nine out of 10 parents do not know the four main symptoms of Type 1 diabetes, according to a new survey commissioned by Diabetes UK.

The IPSOS Mori survey of 1,170 parents found that just nine per cent were able to correctly identify that frequently urinating; excessive thirst; extreme tiredness; and unexplained weight loss are all symptoms of the condition.

According to Diabetes UK, this lack of understanding is one of the reasons that a quarter of children with Type 1 diabetes are only diagnosed once they are already seriously ill with diabetic ketoacidosis (DKA), a life threatening condition which needs immediate specialist treatment in hospital.

To address this lack of awareness, the charity has today launched a campaign to highlight the “4 Ts” of Type 1 diabetes symptoms: Toilet; Thirsty; Tired; and Thinner. The campaign posters use children’s fridge magnets to spell out the 4 Ts, with the aim being to help ensure parents, carers and anyone who works with children knows the symptoms and understands that a child who has any of them urgently needs to visit a doctor immediately and get a test.

The campaign will also raise awareness among healthcare professionals that they need to test for Type 1 diabetes as soon as a child presents with any symptoms. This is because onset can be extremely quick.

Barbara Young, Chief Executive for Diabetes UK, said: “The symptoms of Type 1 diabetes are so obvious and pronounced that there is no reason why every child with the condition cannot be diagnosed straight away.

“But the stark reality is that a quarter of children with Type 1 diabetes become seriously unwell before being diagnosed and we need to bring this appalling situation to an end. I fear that unless there is a big increase in awareness of symptoms, we will continue to see hundreds of children a year become seriously ill completely needlessly.

“We need to get the message across that if you have a child or if you work with children, you need to make it your business to know the symptoms of Type 1 diabetes. We hope the 4 Ts will make them easier to remember and so help ensure children with the condition get diagnosed at the right time.

“As well as making parents and those who look after and work with children aware of the symptoms, we need to increase understanding that a child who has any of the 4 Ts needs to be tested straight away. This is because onset can be so quick that a delay of a matter of hours can be the difference between being diagnosed at the right time and being diagnosed too late.

“This is why we will also be targeting our 4 Ts campaign at generalist staff such as GPs, practice nurses and those working in accident and emergency. While many of these healthcare professionals already do excellent work in correctly identifying the 4 Ts and ensuring children are tested quickly, we hear about some awful cases where parents are told their child has a virus or a urine infection and are told to come back for a test if the symptoms persist. We need to stop this kind of thing happening and the only way to do this is to make sure every healthcare professional understands that a child with any of the 4 Ts needs to be tested for Type 1 diabetes immediately.”

The pop singer Amelia Lily, who was diagnosed with Type 1 diabetes when she was three years old, is backing the 4 Ts campaign. She said:  “I feel very strongly that every parent and carer needs to know about Diabetes UK’s 4 Ts campaign.  My symptoms included drinking a lot more than normal and going to the toilet a lot. I was very lucky as my nana realised what was wrong with me because my uncle had been diagnosed with Type 1 diabetes when he was 14.

“ It’s so important that anyone who looks after children – not just parents but teachers, carers and other family members – knows how to spot the signs of diabetes. So many children are still getting really poorly before they are diagnosed and I want to help put a stop to that.”

The nine per cent figure is the percentage of parents who can identify all four of the 4Ts of Type 1 diabetes. Awareness of the individual symptoms is:

•    Excessive thirst: 58 per cent (Thirsty);
•    Tiredness/lack of energy: 57 per cent (Tired);
•    Frequently passing urine: 38 per cent (Toilet);
•    Weight loss: 28 per cent (Thinner).

Diabetic ketoacidosis (DKA) happens when the body is unable to break down glucose because there isn’t enough insulin. Instead, it breaks down fat as an alternative source of fuel. This causes a build-up of a by-product called ketones. This can lead to coma and even death.

About 500 of the 2,000 children who develop Type 1 diabetes in the UK every year have DKA by the time they are diagnosed.

Diabetes burnout

Looking around the interweb, there’s a lot of it around. I haven’t had a full on burnout but I’ve certainly had times when I’ve felt severely scorched by the whole diabetes thing and in desperate need of some time away from the flames. At the moment things are going ok diabetes-wise (she says, clutching her lucky rabbit’s foot, touching wood and frantically searching for a lucky leprechaun) other than a bit of general diabetes boredom, but it hasn’t always been like that.

Obligatory image of flames when talking about burnout

Many moons ago in my early 20’s I had a period when I just didn’t want to be diabetic any more. I felt I’d done my time. I’d lived with a broken pancreas for 18 years and it should really be someone else’s turn to deal with it for a while. If I’d murdered my pancreas aged 4 there was a good chance I’d have been out on remand after 18 years yet I still had a lifetime of pancreas impersonation ahead of me.

I’ve always been a bit dull when it comes to diabetes rebellion. I’ve never been into the not injecting for days and ending up in a coma thing, it all seems a bit too unpleasant. But I did reduce how much I tested, I did react less to highs and I did see my HbA1c go up higher than I was happy with. More than that though, I just felt an overwhelming sense of frustration and sadness. I was angry that I was stuck with this illness. Frustrated that it didn’t play by the rules. Irritated that my life should have to involve those rules when my friends’ lives didn’t. Convinced that my healthcare team couldn’t help because I knew all the theory, I was just sick of having to put it into practice. Sad that I could see no way out of it, no day off, no short break to look forward to, nothing.

This dragged on for several months while I carried on with normal life at the same time. I pretended everything was ok, but I certainly wasn’t happy. It culminated in me sitting  on my dining room floor one night with a bottle of red wine sobbing at my husband that I’d had enough and that I just didn’t want to be diabetic any more.

It certainly looked like I was heading towards depression (as a brief aside, why do people act surprised when researchers publish studies showing that diabetes increases your risk of depression? Of course it does, anyone living with something like diabetes 24/7 will tell you it is a mental challenge and you can’t be strong forever). I like to understand the mess I’m dealing so with some encouragement from the husband I went to the library. I borrowed some excellent books on coping with depression and cognitive behavioural therapy. There was no rocket science there, but there was plenty of common sense that I just couldn’t see on my own.

I’ve always believed that diabetes is as much about the brain as it is about the limelight-stealing pancreas. I can’t choose whether or not to have diabetes, but I can choose how I react to it. I can choose my own attitude. To do that though, you need really good support. My diabetic clinic at the time didn’t have any access to psychological support like counselling or therapy which is madness. Having seen friends and family use counselling support, I think it’s a real positive and I really think it would have helped me. As it was, I had excellent support from my family and I made an effort to spend more time with other pancreatically challenged types. Being with other people who understood really helped. It’s the usual stuff, you feel less alone, you realise that you’re not the only one dealing with this.

If you’re feeling like this there is no easy answer but you can do something about it. If you can find the energy, do some reading about mental attitude and practical ways to improve it. If you get a sniff of some counselling support being available, bite their hand off, I’ve seen it work and it really helps. And don’t beat yourself up, you’re doing the best you can to replace a pancreas that walked off the job. Keep going!

Finally, for a bit of light relief, take a look at Tim’s take on diabetes fatigue or read our job advert for what we all really need – a diabetes manager

Medtronic locks diabetics in room

Tim willingly accepts a hug from his co-writer
Tim willingly accepts a hug from his co-writer

And we all had a jolly good chat.

Having sold my soul to Medtronic for the price of an easyjet flight to Geneva, I am obliged to say I had a marvellous time at the 2nd Medtronic Diabetes Internet Forum. The fact that is also true is obviously diluted by the fact that they paid for my bed and lunch.

An interesting mix of bright, intelligent bloggers and diabetes types from around Europe perched on the edge of their seats to hear about Medtronic’s latest product developments and research activities. As someone who’s used Medtronic sensors for the last 4 years, I was delighted to have a quick play with their soon to be launched new CGM sensors that we mentioned briefly on ShootUp the other week. A bit like talking about marriage on a first date, if you press them for a commitment on timescales they get a bit wary but I got the impression for the UK we’re talking soon as in weeks and months rather than years.  In wedding terms, I think I’d be buying a hat this season.

While I’m a big fan of their current sensor, I’ve always felt it was a little over-engineered – as if they’d designed the 3ft insertion needle so that it could be used to penetrate even an elephant’s thick skin. The new model was definitely designed with humans in mind which was a very pleasant discovery. More comfort and improved accuracy is definitely the way to go. I’m not sure what diabetic elephants will do now though.

I would like to say more about the sensor, but then I’d be obliged to kill you while Medtronic hunted me down. As we have readers around the world and I don’t know exactly where many of you live, I’m afraid I’m just not willing to take on that logistical nightmare.

New stuff aside, we had a good old chat about how we can all work together. Personally, I’ve never subscribed to the “big pharma are evil” school of thought. I see it that their financial success is based on keeping me alive for as long as possible. And I have slightly more skin in the game as my future quality of life is dependent on them being financially successful so that they can invest in future research and product development. So, if I can work with them to make sure what they develop is what I want and that the NHS makes those products available to the broken pancreas populous, we all win. That’s why I like it when they get real customers like me in to talk to them.

For the first time ever, this weekend I asked a big company to send me more junk mail. I only have to buy a tin of beans from Tesco and they email me. Yet I’ve spent thousands with Medtronic over the last four years and I don’t hear a peep from them. While receiving free Airmiles with ever sensor purchased would be lovely, what I actually asked for was to be kept informed. Let me know about your new products when you launch them. Without completely destroying your business model and revealing your secrets to your competitors, let me know about the research you’re doing and your product plans. I know you keep my consultant updated, but I like to hear this stuff from the horse’s mouth. Lots of nods of agreement from Medtronic marketing types – good stuff.

There were of course the obligatory puppy drowning escapades that come with any visit to a major player in the healthcare market, but I’ll leave Tim to tell you about that. I’ll finish by saying thank you to Medtronic for hosting the event, good on them for taking the time to get some input from their customers. I learnt a lot, met some interesting people and felt like they got some useful feedbackfrom us too. It’s almost as if working together is the way to tackle this diabetes thing, who’d have thought it?

Day two

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I write this from my palatial suite while Stephan lurks grumpily in his cramped garret, I think I got the better room today (I got the better room yesterday too, hurrah!) After our promised breakfast we set off, covered a feeble eight miles and then stopped at our first Roman fort. It was the turn of English National Heritage to get excited at our trip and they kindly lent us a helmet and sword (both genuine, honest) for pictures (see above).

We followed Hadrian’s wall for most of the day in glorious sunshine. Despite liberal applications of factor 30 we’ve still caught the sun. I think this is mainly because we’ve been sweating off the sun stuff as soon as we put it on. If there’s one thing to be said about cycling in Roman costume, is that it’s sweaty. Very sweaty…

The legs have been bearing up quite well and I think this is mainly due to the frequent stops at interesting sites. Also the consumption of lots of cake and ice cream has helped. The diabetes, too, has been good. Today I’ve bolused only one unit so far and have been on a 15% temp basal all day. I’m saving the NHS a lot of insulin if nothing else.

Anyway, dinner beckons. As always, had over to the charity page above if you haven’t already. We’ve already exceeded our target, but we want to smash it! Rrrargh!

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Comatose and rotting toes – the lighter side of insulin dependency