When my Type 1 colleague saw me recently she said she almost cried when she heard the news. It is undoubtedly a very useful tool and potentially life-changing. For years diabetics have made do with finger pricking to measure their glucose. This is quite painful, and in some respects it can feel like you’re being penalised every time you take a reading – not a healthy attitude to instil when you have to measure four or more times a day! On top of this, repeated pricking is not exactly good for the sensitivity of your fingers (especially when feeling in the extremities is one of the first things to be affected by diabetic complications). In addition, the old method only tells you what your blood sugar is at that point in time.
The Libre removes all those downsides of measuring, allowing you to spot your patterns more easily. If old glucose monitoring was snorkelling, new monitoring is like scuba diving: you can understand things at a much deeper level. My own glucose control has improved markedly as a result, which has helped to reverse the first signs of complications.
Some in the diabetes community have greeted the news of NHS funding the meter warily, worried that the healthcare system simply won’t be ready for the demand, or that CCGs will attempt to weasel out of paying for them. Personally, I’m willing to wait and see what happens. CCGs had the ability to fund it from the start of November but, although I'd like to see it being funded sooner rather than later, I know these things always seem to take longer than you'd think.
For me though, the signal sent by the NHS agreeing to fund the sensor goes beyond the practical benefits or concerns. I am profoundly grateful; having the NHS fund the sensor will enable me to have a higher quality of living without the financial burden of £1200 per year. I feel re-connected to the founding principles of the NHS, and to my fellow citizens who will pay for my treatment.
Beyond that sense of gratitude and solidarity, I am hopeful, though my reasoning sounds contradictory. The Freestyle Libre is not the best glucose meter the service could have funded: it is not the most accurate meter, nor does it have the functionality of ‘true’ continuous glucose meters (CGM), which measure every five minutes, report the results in real-time, and are usually interoperable with insulin pumps. But it is relatively cheap (approximately half the price at retail of a normal CGM), and it is good enough to satisfy the needs of patients to be able to spot patterns in their glucose levels, and (with the right education) adjust their insulin dosage.
‘Good enough’ is not usually something to celebrate. But good enough is real, and reveals a shift in thinking. For as long as I can remember, the general attitude of clinicians was that the best way for a diabetic to live was in a perfect routine. The management of glucose levels was the number one priority at any given time; then regular time for injections to cut down on variables (regardless of activities); injections administered fifteen minutes in advance of eating to allow optimal absorption (ignoring the fact that you probably didn’t not know how much to inject at that time), and finger pricking for the most accurate measuring possible (even though less accurate but useful measurements could be taken from less sensitive parts of the body). Real life was relegated: ‘good enough’ was not worth bothering with when textbook control was at stake. A more orthodox, clinical view would have dismissed the Libre as inaccurate, a second-rate option for funding.
Something has changed. Maybe clinicians are listening more, perhaps person-centred care is really beginning to percolate, or is co-production with people who have lived experience starting to bear fruit? Whatever it is, funding the Freestyle Libre is an emblem of hope for diabetics and for the NHS itself.
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Sometimes you really have to wonder… There was news this week that a 17 year old diabetic girl, Lowri Jones, was thrown out of her driving theory test for having her glucose meter by her side. All ‘personal items’ must be locked away to prevent cheating. For breaking this rule, she was disqualified, and left the centre in tears.
Fair enough, you might think, and in some ways I actually agree. In all honesty she didn't “need to have the machine on her at all times”, since you can go for hours without measuring perfectly safely if you've learnt how your body responds to different foods, activities and environments. It’s not the equivalent of taking an inhaler away from an asthmatic. Her meter would have made no difference if she’d gone hypo. Sugar would have, but nothing sweet was mentioned as being confiscated. In any case, the chances of her going hypo in the test were probably fairly low considering exams tend to raise blood sugars and the theory test itself only lasts about 40 minutes. If she was worried about her glucose levels she could have measured before the test and taken appropriate action (i.e. eat something if she needed it or just get on with the theory test).
So maybe, at a stretch, maybe it could have legitimately been taken away from her. However, that seems rather harsh considering she’d got permission to bring it in to the test room. And to disqualify her from the test is frankly ridiculous. How the DVSA people thought a glucose meter could help her cheat is beyond me. But what do I know, perhaps having knowledge of the levels of sugar in your blood is part of the test nowadays?…
The really stupid thing is this sends out the message that glucose meters and driving do not go together. In fact, having your meter on you when you drive is not only the responsible thing to do but is (in practical terms at least) required by law. Anyone on insulin is meant to measure before they set off to make sure their blood sugar isn't too low. If you fail to do this and then have a crash, you can be charged with dangerous driving. If you have the misfortune to hypo at the wheel then you can be charged with driving under the influence!
So please, diabetic drivers of all ages, do take your meter with you! And something to sweet to treat a hypo in an emergency. Oh, and maybe your insulin on the chance you get high blood sugar and need to correct it. That sounds like a lot of clobber to take with you. I wonder if there’s a handy little case you, which would fit that all…
Asides from the questionable circumstances in this story and the frankly irresponsible message it sends out lies a deeper and more disturbing truth about modern Britain. The DVSA staff were completely ignorant of what it meant to be diabetic. The education most people get on diabetes in this country is scant or dangerously misleading, coming from a media obsessed with obesity. No wonder the staff didn't seem to know what was going on; Lowri isn't overweight, she couldn't be diabetic, could she? We really need to sort these issues out in this country. I want to see more diabetes education being given to ‘normal’ people. I want to see media regulation so that they can’t blur the facts to create sensationalist stories, or mix up the major types of diabetes thanks to sloppy journalism. We need to make our voices heard or face the same day-to-day discrimination that Lowri faced at her theory test.
]]>Recently there was a report from scientists at Harvard, Washington, and Tufts Colleges in the US, and Imperial College in London on sugary drinks. It concluded that in the 51 countries studied, 184,000 people died every year due to consumption of sweet beverages. Of those deaths, 133,000 were due to type 2 diabetes.
One of the popular ideas linking sugary drinks and type 2 diabetes goes like this. If you eat a lot of carbohydrates in binges over a long period of time (a few years or more) you induce a lot of insulin surges. With every surge you start to become used to higher levels of insulin in your system, until eventually you lose your sensitivity to it. That’s when you become type 2. It's not scientific fact, but it's an interesting theory, and although I don't believe it works quite in this way - see 'Open diabetes: what it means to them' - for sake of argument let's say it's right.
How do sugary drinks come in to this? Well, they are the quickest and easiest way to consume large amounts of carbohydrates without even realising it. For example, if you go to McDonald’s and get a medium meal of a burger, fries and a ‘full-fat’ coke, the drink will have more carbs than either portion of food. When you think how easy it is to drink a few cokes in a day (certainly easier than eating a multiple burgers or hundreds of fries), you can see how sugary drinks allow a massive and somewhat stealthy intake of carbs.
Related to the report on deaths due to sweetened drinks, doctors from the British Medical Association (BMA) released a report calling for better regulation of ‘junk food’ marketing as well as a 20% tax on all sugary drinks. They claim that such a tax would dissuade people from consuming such drinks and that
“the use of taxation measures on unhealthy food and drink products has consistently been found to have the potential to improve health, with relatively high taxation levels (in the region of 20 per cent) needed to achieve positive health outcomes”
At first sight it seems to be a good idea: increase the price to stop people buying so many drinks, and use the income to help pay for the treatment of type 2 diabetes. But wait a moment. As a type 1, I sometimes need sugar in an emergency. And sugary drinks are the fastest way to treat a hypo. Would the type 1 population be exempt from this tax? It doesn’t seem fair to increase the price of something which I depend upon for my health and well-being.
Also, if we’re going to tax unhealthy products, why should it be the consumer that bears the burden? Why not tax the companies that are making vast amounts of money at the expense of our health? Also, why are the drinks themselves unregulated? Couldn’t we put a limit on the percentage of sugar in drinks, nothing over say, 7% (coke is 10% and some ginger beers are as much as 14%)? Or could we force such drinks to have plain packaging and carry health warnings as we do with tobacco products? Surely all of these are measures worth exploring before we penalise the consumer.
Before we consider these ideas though, why aren’t we looking at why people choose to consume sweet drinks? Isn’t it obvious, Joe, it takes good, you might say. Sure. But why is that? Evolution, you say. I agree, but there is also a link between the desire for a sweet taste and stress, it makes you feel better (http://www.medicaldaily.com/does-stress-make-sweet-food-taste-better-stress-hormone-found-among-sweet-taste-cells-286436). The most stressed people in society are the poorest, those who struggle to make ends meet. They are also the people who consume the most sugar, as not only are they stressed but also cheap, processed foods are full of the stuff. So what would a tax on sweet drinks achieve? Well, it would probably just end up making the poorest people poorer, and so more stressed, and so more likely to keep on consuming sugar.
So what’s the answer? Well, I think to address a problem on the scale of type 2 diabetes you have to think big. Taxing the consumer will not work. Taxing the companies might have an effect (so long as the tax wasn’t passed on to the consumer in raised prices). Education might help a bit: if people knew the dangers, they might not have as many sweet drinks. But that comes with a caveat: just because you know something is unhealthy doesn’t mean you won’t do it. But more than any of those, we need to make sure that the poor aren’t quite so poor. Money worries are the greatest source of stress for the people, and it is stress that leads to a desire for sweet things. Raising the minimum wage to the Living Wage standard of at least £7.85 per hour outside London would help. (Actually this figure needs to be revised upwards since it is judged reasonable only when it includes tax credits… which are being cut.) Increasing the amount of social housing would help as well since it would stop people having to pay large chunks of their already low income on market rents.
To become a healthy nation, we must act become a politically healthy nation and make sure everyone is provided for, or our social disease will continue to be manifest physically.
]]>It’s that time of year again when the weather’s finally half-decent in the UK, so we all decide to go somewhere else… I’m really looking forward to my holiday this year with my girlfriend: away to Croatia for lots of sun, swimming, sleepy afternoons, and the finest pivos that kuna can buy!
The ‘betes is coming too, unfortunately. It’s always an extra faff to make sure you’ve got everything you need – insulin, pump supplies, hypo treatments, lancets, meter, test-strips, insulin pens for back-up and needles (and then add some more, in case of emergencies [and then split your supplies in case one bag gets lost or stolen {and make sure you’ve got a letter from your doctor saying you’re diabetic to smooth any possible problems at airports}]). On top of that there’s all there’s the inevitable changing of insulin: carb ratios as I start to exercise more and the heat makes the insulin become absorbed more quickly. That usually means hypos…
After that paragraph, I’m starting to wonder why I’m going away at all! But the reality is that the diabetes takes a back-seat when I’m away. The problems melt into the distance as you relax and just enjoy yourself.
That’s not to say I’m irresponsible with the old ‘betes, it’s just that whatever problems it causes seem fixable when you’re on holiday. You’ve got time to work out what’s up, and time to prepare for the day ahead.
For example, for a day of cycling and swimming, I’ll pack a bag with a Small-in-one as a back-up case for pens and a spare meter, some Jelly Babies for hypos (I’m a recent and zealous convert to these little beauties!), lower my basal dose and pedal off to a lovely beach!
I’ll also take some glucose sports gels with me. These are brilliant because the work super quickly if you’re hypo, but they’re also waterproof. If you go for a long swim, you can just pop one in a pocket and feel safe.
I’m also (somewhat geekily) excited to try out a little fix I worked out… Last time I went swimming in the sea I came across a problem with my pump. It’s not waterproof, so I had to take it off each time I got in. Not only did this limit my time in the sea since you’re not meant to be disconnected for more than 40 minutes or so at a time (which was annoying), but I also had to just leave it on the beach in my bag (which was quite worrying).
The answer to this thorny problem?
The humble sandwich bag! Just tested a resealable bag in the sink (I lead an exotic life, I know) and it seems to do the trick. I’ll still have to disconnect, but once I’ve got to a spot I’d like to stop at I can just get out, briefly re-connect, get some basal insulin in me, before returning it to the resealable and heading back to shore.
Will my control be perfect whilst I’m away? No, I can almost guarantee that it won’t be. Every time you change your routine, you have to allow for errors as you adjust. But that’s not going to stop me. I suppose traveling with diabetes is just like living with it the rest of the time: you’ve got to think ahead and be resourceful to stop it getting in the way of doing what you want to do. Sometimes that means you’ve got to take risks, and challenge yourself to stay on top of the ‘betes. You’ll probably see your blood sugar go higher or lower than you’d like and have to fix it. But when you’re sitting on a beach in the sun with the person you love you know every risk you take is worth it.
]]>This week began with news that the Health Secretary, Jeremy Hunt, is asking doctors (specifically consultants) to work weekends. This is because, at the moment, if you’re admitted on a Sunday to an NHS hospital you are 16% more likely die than if you were admitted on a Wednesday. Fairly shocking.
The doctors argue it’s not just them that needs to accept weekend working: there are other valuable people in healthcare that only work 9-5. Without more support, doctors will be at the hospital but unable to give proper care. In essence they argue more staff are needed because under current weekend working plans the system would become spread too thin. It would mean having the same amount of staff working longer hours. With life or death decisions to make, clearly this is not a good idea.
Of course, they can’t hire more staff because the Government won’t shell out any more money. It’s a classic case of Empty Words Syndrome, for which currently there is no cure.
Or is there…
Also, in the news was the scandal that 135 people have a foot or lower limb amputated every week, many of them diabetics. As such, it is estimated the 80% of these amputations are avoidable. This has a great human cost: not only have they lost a foot, but amputees tend to be more vulnerable to further complications and disease. There is also an economic cost. Just in terms of healthcare (let alone loss of income, productivity loss due to pain, the energy implications of looking after sick family members etc.) amputations cost the NHS £660m in 2010-11. Given the number of diabetics in the UK has risen since then from 2.6m to 3.2m (+23%), if the number of amputations have grown proportionally then they now costs us around £811m a year. Probably, thanks to an ageing population, cuts to services that may have helped prevent amputations (check-ups, foot clinics, chiropody services etc.) that amount is even higher.
‘Where’s the relation between these stories?’ I hear you ask. That is exactly the problem; there is no joined-up thinking that suggests the one might relate to the other. And yet they do. The first story is about failings in acute care, the second about failings in long-term care. The NHS was set up as an acute service: in 1948 making sure people got healthcare at all was the main concern, and there were far fewer people who had long-term conditions (LTCs).
Now though, long-term conditions are the ever growing problem. Already the cost of diabetes care accounts for around £10bn a year, 10% of the NHS Budget, and as a greater proportion of the population gets older the more of an issue it will become. The problem is that the system isn’t designed for dealing with LTCs. This means time and money gets spent inefficiently, leading to poor healthcare outcomes and further need for acute care. If you improve long-term care, then you should be able to save enough to relieve the pressure on acute care and make everyone’s lives better.
So how do we improve long-term care? Well, the first step is to change the patriarchal attitude of Healthcare Professionals (HCPs), particularly doctors. LTCs need constant care and the people who have are effectively their own medic 24/7. But people need help; to be managed properly LTCs require a partnership between HCPs listening to people with LTCs. Only then can we get the outcomes that will benefit everyone. Only then can we get the healthcare we all deserve.
If you want to improve the NHS, take a step in our #135Shoes.
]]>I posted this tweet this week, and it seems like there’s room to expand on the thought, particularly in the wake of ‘diabetes’ being bandied around the internet lately. I’m thinking about CrossFit here and their somewhat terrible ad:
People (mostly Type 1s) got quite angry that CrossFit were blurring the boundaries between their disease and Type 2 diabetes. This is common and, on the face of it, mildly annoying. It goes hand-in-hand with all those (occasionally well-meaning but always ignorant) things that TypeZeros ask or say:
“Did you eat too much sugar when you were young?”
“Have you got bad diabetes? / Is your diabetes severe?”
“Diabetes, that’s diet-related, right? / Can you eat any sugar? / You shouldn’t eat that, it's sweet.”
Of course, it’s a bit worse when instead of a friend or acquaintance who you can easily educate, it’s a popular fitness company that’s saying it. Not only have they got more reach thanks to their marketing budget, but the whole philosophy of such companies is about taking control of your body. Their message implies that, as a diabetic, you have failed.
Not only is this a fairly terrible judgemental stance to take – who the hell CrossFit to say whether I am OK or not?* - but it is also wrong on two scientific counts, and another on a more human level.
One – There are two different types of diabetes. Type 1 is when you can’t produce insulin, and Type 2 is when you become resistant to insulin. They are quite different diseases, with often quite starkly different treatments. For example, Type 1s can’t survive without injecting insulin whereas a lot of Type 2s can, and treat their disease with diet, exercise and pills.
On top of this, you just get Type 1. It’s got nothing to do with diet at all; it’s an auto-immune disease, and no-one quite knows what triggers it. By using the catch-all term ‘diabetes’, CrossFit seem to be implying that Type 1s have “brought it on themselves”.
That’s true for Type 2s though, isn’t it?
No.
Two – Type 2 diabetes is a diet-related disease, but it is not necessarily caused by being obese. Being overweight is a risk factor. Much like doing CrossFit is a risk factor for severe kidney problems – there is a much higher incidence of rhabdomyolysis for CrossFitters than in the general population. However, rather than exercising too much to cause yourself potentially lasting and expensive damage, Type 2s often haven’t ‘only got themselves to blame’. The nature of being Type 2 or pre-Type 2 (having impaired glucose tolerance), means you are actually likely to put on weight; having insulin resistance makes you tired and liable to eat more. By implying that drinking Coca-Cola will make you fat and so diabetic, CrossFit are putting the cart before the horse. Perhaps that’s a new kind of exercise CrossFit are developing…
In any case, scientifically, CrossFit are out on an over-developed limb.
But as I say, live and let live. I know I’d prefer to have a fully-functioning mind and slightly dodgy pancreas, rather than the other way around...
But CrossFit have also failed on a more human level. Quel ruddy surprise you might say. True, but it is a failing that healthcare professionals often make as well, which is detrimental to diabetics everywhere and this was the real thrust of my tweet.
Diabetes is different for everyone. Not only different as in Type 1 and Type 2, but different within those groups for the daily and extraordinary challenges those diabetics face. Life for a Type 1 in rural Peru, where they have one insulin injection a week (if they’re lucky) is quite different from an urban Western Type 1 with all of modern healthcare to help them.
But even in less extreme circumstances, people face different challenges: one person’s blood sugars might be high all the time because they’ve looking after a new-born baby and don’t have enough time to sleep. Another may face eviction. Someone else may struggle to fit in at school. A child's parents may have divorced. Or, yes, a person might have a problem with their weight. Treating diabetes, of whatever type, is complicated by all these issues, and barking out slogans only helps to depress people who already face difficulties leading a life with a long-term condition. There is no catch-all answer to the problems of diabetes.
I wrote Joe’s Rough Guide to Diabetes to face this truth. The book teaches through encouragement. It doesn’t tell you what to do; it tells you what I did so you can learn from my mistakes. Only you can learn to manage diabetes in your own situation. It’s something that a lot of people don’t seem to understand.
The same broad-use idea underpins the design of the Small-in-one: everything you need for a day, any brand of meter or insulin pen, in a handy little case. Hopefully, it’s enough for what you need, and gives you enough flexibility to live the life you want.
I’m not going to claim my products are the only answer, they’re not. But they are part of an answer to improving diabetes care that starts when people in positions of authority stop telling and start to listen.
*At the risk of going over-board, ‘fascist’ actually seems an apt description of their position.
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Two weird things happened to me last week. One brilliant and expected, the other less so…
The first: one of my best and oldest friends became a father for the first time. Sure, other friends have become dads, and family members have young kids, but it’s not quite the same. We’d been at school together since we were 13, and even lived on the same road. I suppose it felt closer to home. The thought kept occurring: that could be me.
The second event was less gratifying. Apologies in advance for oversharing (!), but I got up in the middle of the night to have a pee. (It happens.) As I stood there, I became a bit woozy. And as I went on, it got worse. After I’d finished (thankfully), the dizziness got so bad I blacked out and collapsed.
My girlfriend called out since she’d heard me fall. No response. She was a bit freaked out – we’ve been going out for almost two years, and she’s never had to help me with my diabetes before. All these worries suddenly appeared in her mind – Did he hit his head? Is he lying in a safe position? Where’s the glucagon? How do you use it again?
As she entered the bathroom, I regained consciousness – groggily. She asked if I was OK, but I was so weak I could barely speak. My hands were shaking. I was ashen and covered in a film of sweat. Hypo, must be really badly hypo. She handed me my glucose meter, and with difficulty and I took a reading. As it counted down I was certain my glucose was going to be ‘LO’.
7.0mmol/L.
Oh. OK. What the hell was me collapsing about then?
After some frantic Googling and a confirmative trip to the doctor, it turns out to be something called syncope of micturition. Or ‘fainting after peeing’ to you and me. Most common in men aged between 30-45 (close enough for me, I’m afraid), and all to do with a sudden loss of blood pressure when you’re hot, and stand up too quickly (and stay standing) in the middle of the night. In other words, nothing to do with my diabetes.
It was quite a shock for both of us. And it got me thinking – sometimes in life there’s just nothing you can do. The unexpected, from the banal to the bizarre to the disastrous, will happen and there’s no way of stopping it.
But seeing the photo of my friend’s son put everything into perspective.
There’s the reason to keep on trying, to get those sugars down, to hit the gym more, to look after myself better. Because one day that might be me with a newborn in my arms, and I want to be able to look after it.
I guess step number one is to get up more slowly in the night from now on…
]]>I’m usually fairly cynical about ‘awareness’ weeks or days. What does ‘awareness’ really mean? It’s up there with ‘advocacy’ in terms of woolliness. And what does it achieve? How does bombarding people’s social media for a short period of time really make a difference to the status quo?
Often such campaigns are earnest and smack of ‘do-goodery’. Which is fine. I have no problem with people wanting to make a positive difference (I’m one of them). But for some reason I seem to have a problem with drawing attention to it. Why? Maybe it’s because I see what other people see when they look at me – a crusader for diabetes care. Sounds a bit cringe-worthy, doesn’t it?
Or perhaps it’s the restrained ‘niceness’ of it all: that C of E-ish quality that comes across as a little bit superficial, somewhat fixed, and lacking in warmth and genuine depth. Cynical, I know. But we can’t all be perfect. Call it the moral equivalent of taking too little insulin.
Sometimes my gloomy prescience was proved right: Philip Schofield on ITV’s Loose Women did a good job of ‘raising awareness’ of diabetes, but also ended up rather belittling hypos. He said his mum would often behave strangely if she was having one, and gave the example of her bursting into applause at the theatre – mid-performance, causing him excruciating embarrassment. Sure, that could happen I suppose – it rang true-ish. But what of people collapsing and going into a coma (possibly while driving) when they’ve had too much insulin? Or the nightmare of living with lost hypo awareness? What of the long-term damage caused by hypos over the years? Perhaps that’s a bit much to ask of PipScho on day-time telly, but I still think he could’ve done better than make it seem hypos were one of life’s little eccentricities.
But this time, mostly, diabetes week felt different. I felt involved. And it wasn’t just because I was able to sell people the Small-in-one from a re-vamped site. It began late on Sunday night when on Twitter I encouraged someone who was finding their diabetes tough to keep going. Then getting in touch with people throughout the week on social media, I saw lots of great articles pop up on advances in diabetes, the problems people face day-to-day, and the issues healthcare has with keeping up with the ever-growing numbers of diabetics. And on top of all that I got to interview candidates for roles with NHS England as a patient rep. Not only was that fairly empowering in itself, but the role was for NHS Vanguard organisations: experimental sites where GPs, hospitals, other healthcare providers and community groups are looking to ‘join up’ interventions to make a lasting difference to people’s health.
I’m sure all of this feeling of ‘doing good’ by making a ‘tangible difference’ will melt away soon (don’t worry dear reader, normal service will resume). But for now, I’m glad we had diabetes week. I just wonder if they could make it longer next time?
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I’ve been involved in the diabetes world for a while now, and seen some great positive changes happen since 1999: making insulin pumps more widely available, a progressively humane attitude to diabetes management (albeit from a small base), and the creation of many diabetes education courses, designed for different needs.
Having written Joe’s Rough Guide to Diabetes and been on a DAFNE course, I know how empowering learning about your condition can be. A bit of practical advice is life-changing and life-affirming. From muddling through between injections, crossing your fingers and hoping for the best, you can suddenly make diabetes work for you. It restores the freedom you lost when you were diagnosed, so that if you really want to do something as simple as eat a biscuit, or as foolish as run a marathon (as I did…), you can!
I thought that Healthcare Professionals (HCPs) were on board. They realised its power, they got it. However, having read Rosie Walker’s article* in Diabetes & Primary Care, I’m not so sure that’s the case. As she points out, diabetes education courses nationwide have less than a 30% attendance rate. In other words, over 70% of people don’t go once they’ve been signed up for one. What’s that about?
There seem to be a whole range of problems that contribute to this situation. A practical issue, for example, is that whether patients turn up to courses or not, GPs are rewarded for simply referring them. Seems like a great deal – for the GP. Not sure how that model would succeed if extended to any other form of marketing though…
Within healthcare more generally, I think there is a deeper cultural malaise. HCPs very often don’t see themselves as teachers. As Rosie points out, ‘a number of clinicians have [said] that concentrating on learning is scary and that they feel out of their “professional comfort zone”’, and that education is often seen as ‘a job tangential to “real diabetes” (i.e. medical management)’.
The combination of these practical and cultural factors means that people are often not made aware of the brilliance of such courses, they aren’t properly persuaded to attend, or that they are signed up ‘on paper’ to go – without being properly reminded or even without knowing about it. In effect, the message from health authorities is ‘diabetes education is excellent, everyone should do it’, but in reality that is not being followed through.
At present diabetes education is being offered as a shiny red apple, but it has a rotten core.
*‘Transforming the Educational Wasteland into a Learning Landscape’, Diabetes & Primary Care, Vol 17, No2, 2015, p64-66
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Last week I posted a video discussing whether people cared about being called a ‘diabetic’ or a ‘person with diabetes’. To anyone without a dodgy pancreas or with normal sensitivity to insulin, the difference doesn’t perhaps mean too much.
“You’ve got something wrong with your blood sugar level, after that it’s all the same isn’t it?”
Well, yes and no. For a start, there’s the never-ending trouble to get ‘normal’ people (Type Zeros) to recognise that Type One and Type Two diabetes are actually different diseases. But if we push beyond this, is there really a difference in the way people refer to you? Is ‘diabetic’ any more offensive than ‘person with diabetes’?
Arguably, yes it is; being called ‘a diabetic’ supposedly sums you up as being defined by your disease. Not only is this reductive, evidence that Healthcare Professionals (HCPs) think of you solely as a clinical problem, but there’s another part to this too. When you are diagnosed it is like experiencing a death – you’re shocked, bewildered by new information, as well as grieving the loss of your freedom. And because the changes you have to make will be hard, and at first you’re likely to get things wrong, everything combines to create a sense of inadequacy. At that point you do feel ‘diabetic’ – defined by your problems and nothing else. Being called ‘diabetic’ then can reinforce all those negative feelings.
As far as I can tell, those are the two main reasons why HCPs call diabetics ‘people with diabetes’ (PWD). It’s meant to show that they think of you as a person first and a clinical problem afterwards, and that they understand that feeling of stigma and are being sensitive to it. And yet they don’t and they aren’t, mostly.
For a start, the phrase ‘person with diabetes’ is so ungainly and long compared with ‘diabetic’ that it instantly draws attention to the giant elephant in the room they’re trying to skirt around. That avoidance suggests two things: either they don’t want to address that emotional issue (like it’s too awkward for them), or they are being patronising; protecting you from being spoken about in reference to your disease in case it upsets you.
Finally, I think that using PWD gives HCPs the idea that they are being sensitive. After all, they’ve made the mental note to acknowledge there’s a tricky issue, and have dealt with it by being careful with their choice of words. Except of course, really they haven’t.
Because the only way they can make life less awkward for everyone is to get practical. If you are in control of your diabetes, are confident about the decisions you make and not burdened by worries, you no longer feel inadequate. Trust me, I’ve been through the bad times and learned to make my disease work for me. Now if someone calls me a diabetic, I think “yeah, I am – I’ve overcome something, which most people never do.” It’s that experience that I wanted to pass on in Joe’s Rough Guide to Diabetes. And to help people put that learning into practice, I made Joe’s Small-in-one, because if it’s not a practical solution I’m not interested.
Does it matter then, what you’re called? Personally-speaking, on a purely practical level, not really. Call me a patient. Call me a diabetic. I don’t care, I’ve been called far worse! Call me a ‘person with diabetes’, if you really want to, but it just sounds weird; like a shop calling their customers ‘people with money’.
On another level though, it can make a difference: there should perhaps be another term for HCPs to use. PWD is not a phrase that engages people: it’s what a computer would make if asked to redefine diabetic to sound more human. Why does that matter? Well, diabetes care has to be a partnership between HCPs and patients. HCPs have the theoretical knowledge and expertise, and diabetics have the actual day-to-day control and power to change their lives. If a diabetic isn’t engaged by an HCP, and doesn’t trust them, they won’t listen and nothing will work for anyone. You know how annoying it when someone calls you the wrong name in rest of your life (e.g. you’re Nicky, but someone insists on Nicola), why should it be different in a clinic?
Partnerships are about giving and taking. HCPs have all the authority of a degree, years of experience, and the healthcare system behind them. Diabetics (particularly newly diagnosed ones) have none of that. So if there is a new term it should come from diabetics themselves: if you want to engage me, ask what I want to be called. That’s making clear you realise I have some role to play. Calling me a PWD is just another misguided (if well-meaning) way of labelling me as diabetic.
Who knows, when diabetics get to define themselves, you might get some names that actually speak to their experience, of how they see their lives managing diabetes. They could be Glucose Gladiators, Insulin Investigators or Sugar Superheroes!
But you’ll never know unless you ask.
Joe (a Diabetic)
]]>PepsiCo have recently announced they are dropping aspartame from Diet Pepsi and replacing it with two other sweetners. As a full-time diabetic and vocational tea-drinker, I regularly sweeten my tea with some man-made sugar and this news got me thinking (a dangerous thing)… Are artificial sweetners really that bad for you?
According to the US Food and Drug Administration (FDA) aspartame, at least in the small quantities in which it appears in drinks, is safe. But for many this is simply not good enough. There have been rumours circulating about this sweetner ever since it was approved – that the studies on it were incomplete or falsified, that there were close links between pharmaceutical companies and FDA executives, that it causes headaches, and that it is carcinogenic.
I’m not really convinced by those conspiracy theories though. After all, it’s been used in food since at least the early 1980s and, as far as I’m aware, quite a lot of people have consumed it since then. If it were really that bad for you, I would have thought there would be a large spike in the number of brain tumours (which it supposedly causes) since then. And not only that, but that there would be a direct correlation between people with brain tumours and consuming a lot of sweetened drinks. As far as I’m aware, neither of those is the case.
I don’t think sweetners are necessarily brilliant though. Recent studies have shown that people who drink a lot of sweetened drinks are at a higher risk of Type 2 diabetes, metabolic syndrome, and heart disease. But others have also shown that sweetened drinks may help maintain weight levels. Both of these results might be true, or they might be false. Trying to isolate aspartame as the one factor across a million others that could tell you how harmful it is sounds pretty tricky at the best of times. But when you’re dealing with real-life people, with different lifestyles and social attitudes that can affect their health it sounds nearly impossible!
In short, like pretty much everything, I don’t believe sweetners are wholly “good” or “bad”. They’re just part of the mix. For me, they mean I can enjoy a sweet taste without raising my blood sugar level. As a diabetic, that’s awesome! Do I consume them constantly? No! Just as I wouldn’t drink coffee all the time, or try to live on carrots alone. At some point, government agencies have got to stop being the regulators of what you eat.
The trouble is that by Pepsi withdrawing aspartame from their Diet drink, I’m pretty certain I’m going to have to keep on defending why I still use it to people.
I guess some of those conspiracy theories were right after all: aspartame does cause headaches…
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Taking insulin is tricky. First you don’t have enough, and then suddenly… ohgodgivemeallthefoodintheworldnow!
Hypos, in spite of their binge-y nature, are not very much fun at all. You’re weak, shaky, and your brain is telling you that eating quickly is the only thing you’ve been put on the earth to do. The problem is this often leads to over-treating them.
Supposedly, you only need 15g – 20g of carbohydrate to treat one. But in reality this means you need 15g – 20g of carbohydrate, 15 minutes for your blood sugar get back up to normal, and the will power of an Olympic athlete to stop yourself from eating any more.
15g – 20g of carbohydrate is only 60 – 80 calories. If you over-treat it by a few hundred calories (easily done depending on the food you eat), and have a couple of minor hypos in a week you can easily see how you might take in and extra 1000 calories a week. That doesn’t sound like a lot perhaps, but if you estimate that one pound of body fat is anywhere around 3500 calories, then a couple of over-treated hypos a week could lead to you gaining about a pound a month.
Putting on weight isn’t great for you physically and psychologically as a diabetic it can send you to a dark place – where you have feelings of being out of control.
So my advice is – think ahead! Have a Strategy and some Tactics.
Your Strategy should be to avoid hypos. Easier said than done, I know, but regular measuring and puzzling out glucose changes should help you get a rough understanding that you can gradually make more accurate.
Your Tactics might be different - experiment! - but mine include:
Being prepared. I have something sweet on me all the time. That way, I’m never in a tricky situation, desperate, and so willing to eat anything to raise your glucose.
Choose my weapon. I pick only fast acting, (preferably low fat) foods and drinks to treat a hypo. Things that I find are good and practical (they don’t go off quickly and you can find out how many carbs are in them) include: Jelly Babies, Marshmallows, Crunchy bars, glucose gels (Lucozade, GSF, SIS or other sports gels), and Cadbury’s Creme Eggs (only for home use – they can crack and leave you with sticky pockets…)I try to avoid things like biscuits and milk chocolate: they tend to work slowly so can lead you to over-treat.
Timing. If I’m going a little hypo before a meal I try treat it first with quick-acting carbohydrate rather than account for it in the dosage for my main meal. It tends to work out better this way for my sugar levels (though this isn’t always practical).
In-correction. If I go a bit high after a hypo (i.e. around 13 mmol/L), I accept it as normal. The liver realises (a bit late…) that something was wrong and releases a lot of glucose into the blood stream.
The weird thing is that this glucose seems to have a ‘use it or lose it’ tag attached to it. If I take enough to correct for the full amount, I find I’ll probably end up going hypo again a couple of hours later.
I don’t correct if it’s ‘only’ 13, but just take my normal dosage at the next meal. I find my glucose goes back to normal after that.
If it does go higher than 13, I try only correcting a bit (perhaps take only one unit of insulin) so that I feel comfortable, and then take the normal dosage at the next meal.
If you're looking for more advice like this, why not check out Joe's Rough Guide to Diabetes?
How do you treat your hypos?
Have you got a favourite food for it?
Are there any tips you’ve got to make sure you don’t over-treat?
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Well, so there it is.
After five years in Government, six weeks of campaigning, and a late night (for me) the Conservatives have somehow defied all the polls and have won a small majority in Parliament.
What this actually ends up meaning for the NHS and social care remains to be seen, but if previous Governments are anything to go by then we are in for turbulent times.
Top-down reorganisation has been disastrous for healthcare professionals, and that's impacted on patients with long-term conditions like diabetes. The less empowered a medic is to do their job, the less time and resources they're given, and the more targets they have to hit, the more frustrated they become. This feeling is infectious and unconsciously gets transmitted to patients in clinics, putting further strain on a relationship in which medics have their traditional authority undermined (after all, who is the day-to-day physician for a diabetic?) This relationship is crucial to making sure people get proper treatment and can lead healthy lives.
Let alone the terrible stories you hear of people having kidney disease, blindness, and amputations thanks to their diabetes going out of control, here's something the Government should understand. Money.
Diabetes already accounts for about 10% of the NHS budget: roughly £10bn a year. It is a phenomenal amount of money, roughly half the total current Government expenditure on Transport. 80% of this cost is due to the complications people get when their disease is not well-managed. One operation for a foot amputation alone is estimated to cost around £17,000.
More and more people are getting diabetes: now over 3.2 million people have it in the UK, and that's projected to grow to 5 million in ten years time. Think of the costs now, with 'only' 3.2 million diabetics and a stretched health service. Do we really want to see where cuts and further political measures take us in a decade?
We need to give everyone involved with treating diabetes as much support as possible. That goes for the professionals as much as the patients managing it everyday. If we don't help the doctors, then who will help the patients? And if the patients can't manage the disease well, then the rest of the country will end up paying for it.
]]>Hi everyone,
Thanks for visiting Joe's Diabetes and our new website!
We think that having diabetes is hard. It's a tricky disease to manage and it can be scary at times.
We want to provide good quality products and services that make living with diabetes that much easier. In part, that's what the new site's about: it's cleaner and simpler to navigate.
Products don't solve everything though, so we're looking at building a section that offers help with managing the bits of your life that are affected by diabetes. To start with we've added a new page about how to handle the 'Type Zeros' in your life, and included a worksheet you can download to help you explain what it's like to live with diabetes.
At the moment we're just stocking our own products but we will be looking to add other people's too, offering some innovative services to help people learn to deal with their diabetes, as well as information about living with diabetes. And there should be some new products heading your way soon so watch this space...
Also, we're really interested to hear your thoughts on developments in the world of diabetes, if there's any you'd like us to stock, or anything else we can do to help you!
Finally, I'll be doing my best to keep this blog up to date (!), giving my views on the latest goings-on, as well as advice on living well with diabetes.
Thanks for visiting!
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