Libre available on NHS - big news and bigger caveats

Last night the rumour mill reached fever pitch as Non Disclosure Agreements were stretched to their very limits. And this morning the Twitterweb was a-buzz with the news that Abbott's Freestyle Libre flash glucose monitor is to become available on the NHS from 1st November*. JDRF issued this nifty press release and everyone's second-favourite cat-loving pyjama-wearing T1 ex-schoolteacher and all-round good egg, Adrian Long, was even glimpsed on Sky News in the early morning undertaking some top Libre punditry and sharing his love of 'Libs'.

* subject to local healthcare economic approval, CCG friendliness, moon in jupiter, blah blah blah.

Of course, no sooner had the long-awaited announcement been made than people began to get a bit sniffy about it, or unbelievably optimistic - depending on their frame of mind. Either Libres were about to be handed out to everyone immediately, whether they wanted them or not; or it was going to be a postcode lottery / the end of CGM funding / a complete disaster.

The official announcement from Abbott covers the whole of the UK, including Scotland, Wales and Northern Ireland. Freestyle Libre will be on the 'drug tariff'. Which means that it will be able to be prescribed, and reimbursed by the NHS.

BUT (and depending on your point of view this might be a small niggle, or a deal breaker), this is subject to local health economy approval.

It's an important step, but it might not be the end
I think I probably come down more on the side of 'wildly optimistic' about the announcement. But the 'local health economy' / local clinical commissioning group (CCG) approval thing is a bit of a worry. Even the JDRF announcement is rather cautious, stressing how important it is that the technology actually does end up reaching people. There may still be some work to do in your area to encourage the bean counters to play fair.

Balance of costs
The cost to the NHS of one Libre sensor is going to be £35. For people using intensive insulin therapy who might be using 8 or more finger stick test strips a day, the costs more or less balance out. Assuming an average-ish strip cost to the NHS of £14.50/pot it costs the NHS about £2.32 a day for 8 strips, versus £2.50/day for Libre sensors lasting 14 days where you can be checking 15, 20, 30 times a day or more. I am reminded of the real-world data that Abbott shared recently. In general, across all their users, the more people used Libre, the better their results. Fewer hypos, fewer highs, more time in range and a lower predicted HbA1c.

Even if you are not prepared to take on the heaving behemoth that is your local CCG and try to turn them around to the idea, I can certainly imagine myself having an interesting conversation with my GP (who, of course, runs their own business) about exchanging my strips for sensors for all the added benefits that gives me. It may be that as part of that negotiation I suggest paying for my own strips for DVLA and other occasional requirements. The cost analysis undertaken by NICE for T1 demonstrates that 8-10 strips a day can be cost effective (more BG information is associated with better BG outcomes and reduced complication risk). There may be niggling details and rules about 'local formulary', but it's certainly a conversation I'd be interested in having with my GP if the local CCG drag their heels (as they have been known to do in my area).

Getting your GP and/or hospital clinic on-side and banging the table for you is a good plan too. Speak to them and get them to apply pressure to the CCG to ensure readers and sensors are listed in the local formulary (which is located at Hogwarts just down the corridor from potions and defense against the dark arts).

But what about 'proper' CGM?
Some people have worried that all these funds getting diverted to Libre will spell the end of CGM funding. Personally I don't see that happening. CGM is currently only weakly recommended in national guidance for people who have significant problems with recurrent hypoglycaemia and have lost all or almost all of their hypo warning signs. The submissions to the NHS for approval were very clear that while Libre can really help some people reduce their exposure to hypoglycaemia with extra information, they are not a substitute for CGM alarms/sensor augmented pump for those with no awareness.

Diabetes UK have put together a position statement on Flash Glucose monitoring which I was pleased to be involved in, and which I think clarifies many of the issues about the Freestyle Libre. What it is good for and who can benefit from it. Thankfully it involves people with Type 1 and Type 2 diabetes - and actually I think should be applied to anyone with any of the many types of diabetes who are intensively using insulin. The recommendations on page 4 are very interesting.

Of course some people have been able to carefully negotiate the fiery hoops to secure full or partial NHS funding for CGM in their own particular case. I'm not sure I see the availability of Libre as affecting the clinical reasons which led to their funding being granted - unless they wanted to swap of course! Freestyle Libre is not a CGM, and does not issue alarms. If those alerts are important to you, then CGM is the better option. But for others the lack of 'alarm fatigue' is a positive benefit of Libre.

Onward and upward
I am really encouraged by this announcement. It's been a long time coming and a lot of work has been done behind the scenes to get to this point. Huge thanks to Lesley and Melissa at INPUT, the team at JDRF and Diabetes UK, and not forgetting Dr Partha Kar in getting us this far.

I am absolutely convinced that Freestyle Libre has a huge potential to help thousands of people who are quietly struggling with their diabetes management. Not in extreme enough need with frequent A&E visits to attract CGM funding, but just keeping going not knowing what they don't know about their BG fluctuations. I really hope the technology can be made available so that those quiet strugglers can go from doing OK to doing really well. Can reduce their long-term complication risk and improve their quality of life.

New NICE Guidelines for Type 1 Diabetes Published (at last!)

As some of you may know, over the last three years (THREE YEARS??!?) I have been working with a wonderful group of fiercely clever and passionate people as one of two 'patient representatives' on the NICE 'Guideline Development Group' which was revising and updating the NICE Guidelines for type 1 diabetes in adults. Expert consultants, eminent physicians, nurses, pharmacists, GPs, educators, editors, along with a host of other specialists including researchers and health economists who gathered and organised an almost unimaginable quantity of research data for the group to filter through and consider.

It has been a huge privilege to work with them all, not least Professor Amiel, the chair of the group, who is a complete inspiration and quite the nicest person you could meet. We have not been permitted to mention anything much connected with the discussions until publication, but at last, today, the guideline launches here: ‘Type 1 diabetes in adults: diagnosis and management'.

Hooray!

If you have been living in a cave for the last 16 years and have never heard of the National Institute for Health and Care Excellence (NICE), they are an independent body working as part of the Department of Health who publish guidance on all manner of healthcare topics which aims to set the 'gold standard' of evidence-based care, balancing clinical outcomes, patient preference and quality of life against the cold hard reality of NHS budgets (ie Yes! You can have something expensive... but only if published research shows it's reeeeeally good for most people).

As a patient, I *love* the fact that I can have a weighty, official, authoritative document that describes what has been shown to be the very best in diabetes care. It gives me something to consult to measure my own experience in clinic, and the right kind of pointy questions to ask if I think I should be getting something that isn't being offered. Plus if I think something should be available that isn't, the documentation is so comprehensive that (if I wanted to) I can dig down into the 'linking evidence to recommendations' section to unpick the reseach and discussions that underpinned the recommendations.

NICE seems to get a hard time in the press off and on (either for denying treatment, or for recommending it) and is frequently accused of bias or an almost corrupt collusion with the pharmaceutical industry. I have to say this could not be further from my experience of the guideline development process. Each meeting included a new declaration of 'conflict of interest' and anyone with a conflict, financial or otherwise, however minor, was not permitted to contribute to the discussion or was asked to leave the meeting entirely.

I am very proud to have been part of the process, and believe that this updated guideline, if fully implemented has has enormous potential to improve the lives of adults living with type 1 diabetes in the UK.

Here are a few things I'm really pleased made it into the final version:

Structured education

Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.

If a structured education programme has not been undertaken by an adult with type 1 diabetes by 12 months after diagnosis, offer it at any time that is clinically appropriate and suitable for the person, regardless of duration of type 1 diabetes.

My feelings about the lack of structured education formed no small part of my journey toward joining this NICE committee. Carb counting, dose adjustment, correction factors, basal testing, guidance about exercise, alcohol and sick day rules. How can people be expected to make a decent go at managing their type 1 diabetes without these skills? And yet the number of people who have ever attended such a course is pitifully small. Unless I'm mis-remembering it's something like 6.5%. Let's hope that during the life of this guideline that changes significantly.

Access to test strips

Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:

• the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
• the frequency of hypoglycaemic episodes increases
• there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
• during periods of illness
• before, during and after sport
• when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
• if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high-risk activities).

'Proper' testing frequencies of up to 10x a day (and making use of the results) shown to be more effective AND cost-effective. No more shocked looks permitted from non-specialist Drs or nurses suggesting a couple of times a week should be fine.

HbA1c Target

Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long-term vascular complications.

Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, comorbidities, occupation and history of hypoglycaemia.

I've written about this before. Personally, as a patient, I am really pleased with the balance between these recommendations. Don't tell me to be happy with an A1c approaching 8% if there is real evidence that lower is better to guard against long-term complications. Don't tell people who have no problematic hypoglycaemia that their A1c is 'too low' because it's in the 6s (can't get used to the new numbers yet, sorry!). On the flip side, treat me as an individual, don't label me as a failure because you have a magic number in your head that I am working toward, but I'm not there yet.

Not exactly 'CGM for all', but...

Consider real-time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• Hyperglycaemia (HbA1c level of 75 mmol/litre [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real-time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more.

'Consider' is NICEspeak for a much weaker recommendation. It should be on the table, but it's not for everyone. The evidence for effectiveness of CGM was just not compelling enough to do anything else at it's current eye-watering pricetag. To be honest I was shocked at how weak it was, given the experience of people I know who self-fund CGM. Continuous Glucose Monitoring it seems just doesn't do well enough in Randomised Controlled Trials. But at least, here, it *might* be available on the NHS to the people who really need it.

And finally
It was great to see bi-modal (mixed) insulins being given the heave-ho, unless people really wanted to use them. From now on people should be able to start off on a proper flexible MDI regimen from the outset, along with some good education and support.

It was also really heartening to see how NICE reacted to the subject of language. The editors were updating the old recommendations for clarity and new styling (for example 'adult with type 1 diabetes' rather than 'diabetic' or 'patient'). I raised the question of the word control which is a difficult term for some people. Personally I cannot 'control' my diabetes - I do not have the ability to affect all the variables. At best I can limit some, and try to react to, or work around the others. I don't control my diabetes, I manage it. Because of the timing of the discussion, it was not possible given the time-restrictions to change the terminology used in the full guideline (though discussions will be had within NICE for future versions). I was very pleased though that for the 'Information for the Public' version, the phrase 'diabetes control' has been replaced.

What do you think? Will the new NICE guideline make any difference to you? Were you even aware that there was one to cover type 1 diabetes? Let me know in the comments below.

#135shoes - 108 unnecessary amputations a week

Diabetes UK have been working on their 'Putting Feet First' campaign for some time now, but today is the day they are really trying to hit hard with it. They are staging an event in Westminster featuring 135 shoes scattered across a lawn, each bearing a note of the impact that amputation, or living with the threat of amputation can bring. The statistic is horrifying, but even more gut-wrenching is the byline. Eighty percent of these amputations could have been prevented. Eighty percent. It strikes a particular chord with me as I am aware that Bristol, where I live, has a particularly high rate of amputations compared to the national average.

Having lived with diabetes for over 25 years I have spent quite a lot of time trying not to think about complications, but if you are lucky enough to still have all ten toes attached, just think for a moment about the impact on your every day life of losing one or both of your feet. Of the additional challenges that would come with a million every day moments. Stairs, nipping to the shops, running for the bus, running for pleasure, sports, shoes, paddling in the ocean, walking the dog... And for 108 of those 135 people, this devastating event might have been prevented.

Many of the people who live very real and very human lives behind this cold, hard statistic will be living with Type 2 Diabetes. They will be used to having people assume that this is all their own fault. That they should be ashamed of themselves. That they have only themselves to blame. Because type 2 is a 'lifestyle' disease, right? "Too many cakes and not enough exercise you poor, waddling excuse for a human being". Blah blah blah. So on top of the physical trauma and day to day difficulties faced, they will be heaped upon with guilt for the enormous cost of their treatment to the tax payer. What remains of their self esteem crushed beneath the weight of media, public and family opinion and in some cases even a medical profession that seems to overtly judge them as failures.

But is it really as simple as that? And even if you think it is, what fruit does that mindset bear?

Personally I don't believe that it is. There is a lot in this article, You did NOT eat your way to type 2 diabetes, that makes a lot of sense to me. Now that's not to say that I dismiss the concept of personal responsibility entirely. Of course not. If some people had made changes perhaps they could have dodged their diabetes diagnosis. But it just seems to me that many (most?) people who live with Type 2 diabetes were doing pretty much what everyone else was doing, it was just that their metabolisms weren't up to dealing with the semi-toxic combination of a modern Western diet and a massively wealthy and profit-hungry food industry.

But getting a diagnosis of diabetes (of either type!) surely should not inevitably lead to 135 people each week undergoing expensive life-altering surgery. Our understanding of managing long term conditions, like diabetes, seems to be improving year on year, and yet many of the outcome measures seem to be  getting steadily worse.

How can we change the balance so that there are only 81 shoes on the lawn?

Here are a few thoughts from my unqualified, unmedical viewpoint:

1. Get your feet checked every year
   This is for us lot with diabetes really. Foot checks are supposed to be part of your annual review every year. Go to your appointment and make sure you get your pulses and sensitivity checked. If there are any problems you want them spotted early.
   
2. Stop telling people that diabetes is inevitably progressive
   This is less a factor for us living with Type 1, but many with Type 2 are set up to fail from the outset - if something is inevitable, why bother putting in effort to prevent it? Effective managment of diabetes is a relentless slog, we need to be encouraged that the effort is worth it. Don't blame people if they need more or different medication as time goes on, but never make them feel like it is not worth trying, that there is nothing they can do. Focus more on the positive benefits of effective management in the short and long term.
3. Stop telling people that type 2 is 'mild'
   Incredibly this still seems to be suggested to some people. That type 2 is not really very serious and doesn't need much attention paid to it. I much prefer the quote about diabetes and tigers: "Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it'll pounce on you and rip you to shreds."
4. Start telling people to watch their carbs
   Diabetes is a long term condition. People were diagnosed with it years ago, and told the information that was felt appropriate then. Some years ago people diagnosed with type 2 diabetes often significantly increased their 'starchy carb' intake on the advice of their healthcare professionals. Almost all sources now seem to acknowledge that moderating carbohydrate intake - and not just sugar, ALL carbohydrate - is beneficial for people with diabetes. Now I'm not going to open the low-carb can of worms here, because what I am talking about is really more to do with better BG outcomes than any arbitrary label you might place on a number of grams of carb a day that you might feel works for you. Which leads me nicely on to...
5. Allow motivated patients to check their Blood Glucose
   The vast majority of people living with diabetes in the UK have type 2. And the vast majority of them are told, time and time again, that they do not need to test their blood glucose levels. That the 6-monthly HbA1c test is enough. I could write a long and ranty post about how we seem to have got ourselves into this mess (including the Farmer et al study that is still used as an official reason why SMBG - self monitoring of blood glucose - for type 2 is not recommended) but I would rather talk about the motivated people I see on diabetes forums. They fund their own strips because their surgery won't. They test before and an hour or two after eating something (whenever they generally get their highest reading). They look at the results and the quantities and types of foods eaten and make adjustments. They use the very pre- and post-meal target values that are in the same NICE guideline that denys them access to SMBG. And as a result? They are able to actively tailor their diet to suit their own diabetes, many are able to reduce or emilinate medication and their HbA1cs usually fall well outside of the 'danger zone'. And if they can do it... so can hundreds and thousands more if given the right testing framework, simple guidance and 6 month's or a year's worth of strips for that intensive early testing.

Well done to Diabetes UK for highlighting this important topic. I hope some action can be taken to reduce the enormous, unnecessary, financial and personal cost behind these statistics.

World Diabetes Day 2014 - #insulin4all, food and meeja mentions

The (diabetes) wisdom of Homer - with apologies to Matt Groening

Yesterday was the anniversary of Frederick Banting's birthday (one of the clever chaps behind the discovery of insulin) and, not coincidentally, World Diabetes Day. Here are a few things that caught my eye:

#insulin4all
Perhaps one of the most moving initiatives on the day came out of a collaboration between teeny tiny diabetes charity The Pendsey Trust and t1international.com who are seeking to break down the barriers across the world that prevent so many people from accessing insulin. Or which mean that they have to weigh life-saving medication against food or shelter for their families. The YouTube video clip explains it far more eloquently.

You can add your support on the insulin4all tumblr blog too.


Enjoy Food
Diabetes UK chose World Diabetes Day to launch their 'Enjoy Food' campaign. It's good to see an 'everything in moderation' and 'nothing is off limits' feel to this campaign - especially from a type 1 perspective. I confess I have a tricky relationship with some of the dietary advice that DUK have dished out over the years, particularly for people with type 2 diabetes. It is a great relief to see them backing off from their 'all carbs, all the time' mantra more recently and actively stating that all carbohydrate becomes glucose in the blood. Bizzarely DUK still seem to be stridently anti-fat despite much recent research (including this) and even the British Heart Foundation recently confessing that there was no longer any real evidence to support its historic 'avoid fat/go for polyunsaturated' guidance. But hey... one thing at a time.


tweet tweet
There was quite a lot of twitter action again this year including the amazing 24-hour #wddchat2014 which saw global DOC communities uniting again and passing the tweet-chat baton around the world. Pressures of work meant I was not able to take part much this year - but somehow it's good to know it's going on around you. Huge thanks to Cherise (@DiabetesSocMed) for organising it all.

Fame at last?
I was chuffed to be contacted by the lovely Amy Fleming at the Guardian newspaper a week or two back who was planning a story about the Abbott Freestyle Libre and was interested in including some of my ramblings on the subject. All I can say is that the picture desk must have been rather frantic (or all at the pub) when the story hit the website as they went with my ugly mug by way of illustration. Even more surprisingly the article is factually pretty spot on, and even carefully differentiates the type of diabetes in question. Given the number of horrendous diabetes gaffes in the media I have a sneaking suspicion that Amy Fleming might actually have diabetes herself, or have someone very close to her that does - either that or she's just very, very good at the ole journalism lark. You can read the article here.

15 Checks, Diabetes Audits and Prawns

Last week saw the publication of the National Diabetes Audit (NDA) for 2012-2013. It's a bit like Ofsted for diabetes clinics and includes results for just over 70% of the places providing care for people with Type 1 and Type 2 diabetes in England and Wales. If you want to dig into the vast and weighty documents yourself, they are published online here: www.hscic.gov.uk/nda.

I got as far as skimming Report 1 'Care Processes and Treatment Targets' (check out that horrendous BG testing technique on the cover folks... right into the nerve-ending-packed softness of the fingertip! Use the sides people use the sides) before one of the stats just jumped out and hit me between the eyes.

Way less than half of all Type 1s are getting the routine healthcare checks they should.

40%. Forty. Percent.

My daughter reliably informs me that in GCSE terms that comes out as an 'E'.

The actual figure is quoted as 41.3% and it has been falling since 2010. That's almost a quarter of a million people living with type 1 diabetes who are missing even the most basic annual checks to help them keep on track.

When it comes to actively supporting people to manage their condition effectively by offering them some sort of structured education course the stats are even more eyewatering. Less that 4% of people being offered a place on a course. A measly 1% actually make it onto the courses. There's a lengthy rant right there... but that will have to wait for another day.

Diabetes UK lists 15 healthcare essentials that people with diabetes should get each year:

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year*
5. Have your feet checked
6. Have your kidney function monitored annually
7. Have your urine tested for protein each year
8. Have your weight checked
9. Get support if you are a smoker
10. Receive care planning to meet your individual needs
11. Attend an education course to help you understand and manage your diabetes
12. Receive care from a specialist paediatric team if you are a child or young person
13. Receive high quality care if admitted to hospital
14. Get information and specialist care if you are planning to have a baby
15. See specialist diabetes healthcare professionals to help you manage your diabetes
16. Get emotional and psychological support

* eye screening is now handled separately and bizarrely is no longer included in the NDA

The ones in bold are the checks that are covered by the NDA. Eight or nine routine measures to check that nothing nasty is lurking, and to be able to do something about it if things are going awry. These checks are not about passing or failing - they are about protecting us.

So what is going on?
Is it just people not showing up?
Is it that the appointments are not available at convenient times?
Is it that people simply do not *know* that these simple routine checks are so very important?
Is it a lack of resources?
Overstretched NHS?
Un-engaged individuals?
Are clinics not helping patients?
Or are patients not helping themselves?

My guess is that it is *all* of those things.

I wrote once before about the exponential rise in the number of appointments that were involved in my 'annual review' and the situation is much the same. Decentralised care may work well as a buzz word, but patients have ended up with 4 or 5 appointments instead of 1, which makes the whole process much more of a faff.

But here's the harsh truth.

Faff or not - if you are living with type 1 diabetes you need to do whatever you can to make sure that you get those checks.

They are not for the benefit of the doctors. They are not for the purposes of making someone's spreadsheet look snazzier. They are for YOU. We live in a world where people struggle to get access to any insulin at all - let alone the particular type and/or colour of pen that they prefer. The very least we can do is turn up for (free!) appointments designed to help us to make it through life with our feet on and our eyes working.

It absolutely appalls me that the figures are what they are. And the people most likely to suffer as a result are not the clinics or doctors, but the very people who are not getting checked.

Yes I'm sure some clinics could help with more flexible appointment times. Some employers might need to be reminded that under the DDA (or whatever it is called this week) they need to make 'reasonable adjustments' to support employees with diabetes in keeping these kind of routine healthcare appointments.

But at the end of the day we have to find ways of attending.

Prawns
Perhaps it would be easier if diabetes was a bit more like prawns.

After 25-odd years I am very glad that diabetes is often a relatively slow-moving adversary. But perhaps part of the problem with all those thousands of appointments from the patient perspective is that diabetes is not enough like prawns.

Perhaps it's not prawns for you. Maybe it's peanuts. Or yoghurt. Or fresh ravioli with ricotta.

When I was in my teens I had an absolutely delicious pub meal out while on holiday. I chose a local speciality of prawns in their shells. They were fabulous. On the way home in the car I began to feel a little uneasy. I used to suffer a little with motion-sickness so put it down to that. I still felt a bit odd and over-full at bedtime. But then... we had eaten rather a lot. I woke with a start in the early hours and knew instantly that things were not right. Not right at all. Somehow I managed to stumble, in the dark, with excruciating urgency to the tiny the bathroom where I remained until the following morning in a wretched, heaving heap.

I still struggle to look at a prawn.

The trouble is there is no such immediate come-back for a missed appointment here or there. Eating a big ole serving of 'not enough time at the moment' prawns in 'missed appointment' sauce doesn't bring me out in a sweat just thinking about it. But the results of missing those checks are potentially even more catastrophic.

80% of the NHS budget that is spent on diabetes goes on treating complications. We owe it to ourselves to do what we can to change that statistic. To beat diabetes one day at a time. To keep ourselves well.

Making sure we get all our routine healthcare checks is a tiny step in the right direction.

Need to know - Diabetes UK's Make the Grade Campaign

In this latest guest post for Diabetes UK I've been invited to think about their fantastic 'Make the Grade' campaign to improve care for children with type 1 diabetes in schools.

There are a lot of things that you can learn.

Really. Lots.

The world is a big place, and almost everything about it has a bewildering level of complexity and detail that can be known. And however much you know, or think you know about anything, there is still more that can be learned.

As an example (I think I am nicking this from QI, but it may well be a conversation I had with my father-in-law about maps) the UK is an island, and you can find authoritative estimates of the length of its coastline. I say estimates, because of course coastlines being what they are, all 'wibbly-wobbly', cartographers quite rightly usually measure a series of straight lines from point-A to point-B without going around absolutely all the wibbles (what Slartibartfast described as the 'lovely crinkly edges'). In fact if you wanted a more detailed and empirical measurement, you would need to carefully measure in and out of each tiny inlet and rivulet; and decide how far inland to stop measuring the rivers. You would suddenly have a whole lot more coastline to measure. But more than that, each of these inlets are made up of still smaller imperfections which each have an edge than can be measured. And down and down to a grain of sand level where you could, if you had quite a bit of time on your hands, measure around each fragment of rock, each plant cell, each molecule.

So it turns out that the length of the UK's coastline is pretty much infinite.

The more you look, the more you see.

And so it is that most of us spend most of our time deliberately ignoring most things. The world is just far too complex and difficult to comprehend otherwise. We live our lives on a 'need to know' basis, and mostly what we need to know to get by in the world is almost nothing about everything. The merest fragments. Therefore, by extension, we can't expect everyone to know very much about a subject, even if we have decided to learn quite a lot about it ourselves.

Can you tell me where to find all the hidden ammo packs and weapons stashes on the second 'Venice' level of Tomb Raider 2? Well quite. You do??? Dude, let it go - it was getting on for 20 years ago.

I was diagnosed at age 21, in the final year of my degree. Like almost everyone I knew absolutely nothing about type 1 diabetes when I had *that* conversation with the GP who had the results of my Oral Glucose Tolerance Test. At a push I might have been able to tell you that it had something to do with sugar and not being able to eat stuff (I know!). I saw something on Twitter this week by someone who had an overwhelming desire to eat an entire pack of doughnuts in the days before they had their diagnosis conversation, just because they 'still could'. I remember that feeling myself. That in some ways the conversation with a sober-faced Doctor was the dividing line that separated the old life from the new. I remember asking for sugar in my coffee on the diabetes ward, and wondering if honey would be OK as a substitute for table sugar because it was, you know, 'natural'.

Pitiful.

It took me a long time to learn just a little about living with type 1 diabetes, and an even longer time to unlearn some of the misconceptions I picked up along the way. I've been juggling life and my diabetes for just short of 25 years, and I now consider myself to be a semi-competent beginner.

Managing type 1 diabetes is like measuring the coastline of the UK. Managing type 1 diabetes in children and young people is like measuring it with a magnifying glass. It is almost infinitely complex.

It is no wonder schools need support. It is absolutely no wonder that some schools really struggle to help children and young people with diabetes and other long term conditions effectively. Every child is different and has a unique set of needs and support requirements. Every child with type 1 diabetes doubly so and twice on Thursdays.

And yet there is hope - there are beacons of great care and lessons that can be learned elsewhere. If you are connected to a school, nursery or college that is not quite stepping up to the mark diabetes-wise, now is the time for action.

Fanstastic care and support for children with type 1 and their families is possible. It is happening all across the country. Make the Grade is about providing help and information to schools, nurseries, colleges and clubs that are finding it hard to rise to the challenge of type 1. It is about getting the best care for each child so that they can maximise their potential.

Make the Grade offers a practical, focussed toolkit and information for improving care. Good job too, because as of September 2014 proper support and care for T1 children and young people in schools becomes a legal requirement. This is no longer something that can be put on the back burner because, you know, it's a bit tricky.

If you are a teacher, parent or governor and want to know how 'Make the Grade' can make a difference to children in your care, visit the Diabetes UK website to find out more.

Good care for children with Type 1 diabetes is possible. Many schools provide fantastic support to children with Type 1, but some have concerns about how best to look after children with the condition.

A new law in England means that from September 2014 schools in England must make sure children with Type 1 diabetes are properly supported. But good care needs happen right across the UK, whether you live in England, Scotland, Wales or Northern Ireland.

Schools have responsibilities for children with long-term medical conditions, such as Type 1 diabetes, so they need to know how to ensure children have the right care and support to enable them to take part in all aspects of school life.
That’s why Diabetes UK has produced new resources for schools which provide practical tips and information on how best to support children with Type 1 diabetes so that they are able to make the most of their time at school. Their Type 1 diabetes at school: School pack is packed to the brim with useful information, including a sample medical conditions policy, information about the condition and how best to support children and young people who have it, answers to important questions, like how to store insulin, what training staff might need and much, much more.

The free school pack is available to order on the Diabetes UK website at www.diabetes.org.uk/schools.

(from the 'Make the Grade' Action toolkit)

Hands up who thinks kids with diabetes deserve decent care and support in schools

I was diagnosed at 21, during the final year of my degree. Not perfect timing I suppose, but I recognise that I had it a whole LOT easier than the thousands of kids who are diagnosed at a very young age and who have to try to balance life with type 1 diabetes alongside the unpredictability, raging hormones, growth spurts and peer pressure of school life.

I. Cannot. Imagine. It.

So hats off to Diabetes UK for their 'Make the Grade' campaign which aims to improve the support offered to children with diabetes in schools.

If you'd like to find out a little about what they are doing and why it is so important, they have produced a nifty piece of You-Tubery here:

https://www.youtube.com/watch?v=IDsUSoDtyjM

Nano technology, non-invasive BG monitoring and smart insulin

There are some diabetes-tech buzzwords that always attract my attention. Thanks to a tweet from Nick Guerin (@Typeaware) I was treated to a triple-whammy this morning.

We have come painfully close to a 'non-invasive' BG monitor (or even better CGM) once or twice before, but it is good to see that the search continues. To be honest the breathalyser-style BG monitor (which still uses a single-use 'strip') interests me less than Smart Insulin, which I think is probably my most favouritest 'wildest tech fantasy come true' product of all time ever - see here.

"A team at North Carolina State University believes so. Prof Zhen Gu and his team are working on a couple of different systems which may achieve this ideal – effectively creating an artificial replacement to the beta cells in the islets of the pancreas, which would normally release insulin to counter high glucose levels.

"Our overall aim is to create 'smart delivery' systems for insulin provision," says Gu. "What I mean by that is that insulin is delivered at the right time, via a safe approach – avoiding too much or not enough dosage – and in a way which requires only small formulations."

One of the team's ideas in development is an injectable nanoscale sensory network, announcing earlier this year that such a system maintained normal blood sugar levels for up to 10 days in type 1 diabetic mice. The "nano-network" degrades to release insulin when glucose levels are high and the researchers are currently trying to optimise it to respond as quickly as pancreatic islet cells do naturally in the body, and to make it more biocompatible with human tissue."

And wouldn't you know it those pesky diabetic mice have beaten us to it again.

Full article is here:
TheGuardian.com - Nanomedicines set to revolutionise the treatment of diabetes

Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters

Too busy even for the introduction? Click here!

OK. Enough really is enough.

Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.

The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:

"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."

Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."

I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.

I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.

1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.

2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)

3. Insulin drives blood glucose levels down.

4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.

5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.

So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.

It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.

Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.

Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?

If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"

Has the light gone out on C8 Medisensors optical CGM?

Someone left a comment earlier today asking if I knew any more information about the C8 Medisensors non-invasive CGM, which was given CE mark approval late last year. Some of you may remember me getting quite excited about it after having seen the device in action.

At that stage, the general expectation seemed to be a European launch in the Spring of this year. In January I got wind that the launch had been put back slightly to allow for 'further enhancements' to be made prior to the launch in mid-2013.

I've had a little look around the internet, but all I can find are reports/stories from late last year. Trying to look up the C8 folks I met via LinkedIn suggests that they stopped working for the company in January this year. It seems that at about the same time John Kaiser took over reins at the company - so what happened then?

With an increasing sense of doom, I realised that their website seems to have gone offline in the past few months too.

To be honest, I'm gutted.

Just wondering if anyone knows what the story is? I really believe that their non-invasive CGM, if it lived up to the promise shown, genuinely had the ability to completely change the landscape of diabetes care across Europe, and CGM pricing/availability in particular. £2000 for 4 years, rather than £3000-£4000 every year would put self-funded CGM within the grasp of many more people in the UK. A currently frustrated and untapped market.

I can't have been the only one waiting for lauch with one hand reaching for my wallet.

Anyone from C8 Medisensors out there?

That 'biohub' thinghy...

I don't think this caused quite such a stir over here as it did with people living with type 1 diabetes in the states, but if you'd like to know a bit more about the spongey thing that might make insulin on demand in realtime and the hoo hah it caused you should probably read this post:

http://typicaltype1.com/2013/03/11/the-biohub-brouhaha-of-2013-an-animated-retrospective/

It will make you smile.

5-10 years eh? Sounds quite familiar.

Seeing red: Food labelling, traffic lights and missed opportunities

My heart rate was significantly raised this morning while at the gym. Not because of my less than challenging treadmill pace, but because of a news item that came onto breakfast TV about the new food labelling system that is expected to be in place by the Summer of 2013.

I wrote about the public consultation on the subject that took place in July 2012. At that stage I was full of giddy optimism that my eloquently worded appeal would result in a Marvellous New World of clearly labelled, impeccably helpful packaging that assisted the entire UK in making better food choices, but in particular supported the millions of people living with (or at risk of developing) diabetes of one form or another - something upward of 5% of the population by 2010's numbers. The people for whom this stuff really matters.

The precise details of the new front of pack splodges are still being worked out, but from what I've read my life is about to get just a little bit more difficult and I'm going to be very grateful that my phone has a calculator on it.

I don't really have a particular problem with the traffic light system as an infographic device, my concern is based mostly on the information that the current systems display, and in particular the obsession with listing 'of which sugars'.

Let's just get this straight, 'of which sugars' is an almost entirely useless piece of information. Well, not quite. If you were comparing two products side by side that were virtually identical in all other respects, then perhaps 'of which sugars' might be worth casting an eye over.

The Really Big Problem is that most people *think* they know what 'of which sugars' means. People will believe (because they have always been told that this is the case) that all food with lots of sugar in it will zoom straight into the bloodstream, while food with no added sugar will be absorbed more slowly. Like most of the best misconceptions this opinion persists because it is almost true. Food with a large amount of added sugar is likely to hit your bloodstream fast. But there are many many foods which are broken down significantly faster than sucrose. And the REALLY Really Big Problem is that many of the foods that break down in the gut faster than sucrose (table sugar) are the very same ones that people think of as being 'healthy'. Brown or wholemeal bread, for example... Pretty much any breakfast cereal you can think of... Mashed or baked potato...

The Glycemic Index (or more helpfully the Glycemic Load which takes portion size into account) is a measure of how disruptive a food is likely to be to blood glucose levels. To measure GI a smallish number of test subjects are usually given 50g in carbohydrate of a particular food and then their blood glucose levels are measured to establish how fast the energy in the food hits the bloodstream. Simplistically, all carbohydrate is made up of units of monosaccharides (glucose) joined up in chains. The easier it is to break down the chains into glucose, the faster it will be absorbed. On the GI scale, pure glucose scores 100. Sucrose, table sugar scores a 'moderate' 60. Despite it's 'starchy' reputation the carbohydrate in wheat is very readily broken down and there is far less difference between white and brown versions than we might hope for - exact values will vary, but wholemeal bread is likely to be between 68 and 78. Yes, that's right... gram for gram of carbohydrate it's faster than sugar. When you begin to look at breakfast cereals things get even more bizarre as far as the 'of which sugars' is concerned. Cornflakes weigh in at a blistering 77-93, while Crunchy Nut drop a little at 72 and Frosties score a mere 55. These breakfast cereals will be slowed a little when eaten with milk, but completely counter-intuitively the ones with added sugar are *slower* than those without, presumably because the corn itself is so darned fast.

That's not to say that any of the foods I mentioned are necessarily 'off limits' for a person with (or without!) diabetes - but I really think we need to get over our obsession with sugar in this country and especially where food labelling is concerned. A low 'of which sugars' does not make something OK. It cannot be relied upon as a marker of how quickly the carbohydrate in a food will pass into your bloodstream at all. And for a T1 person playing at being their own pancreas, or a T2 attempting to eat in a way which helps their wonky metabolism this stuff really matters.

From a carb-counting type 1 perspective the proposed changes are also incredibly inconvenient. This fatuous obsession with the display of 'sugar content' means that prepackaged foods will, most likely, no longer display total carbohydrate content per portion, certainly not on the front of the packs. Sainsbury's made this change some time ago adopting a 'traffic light' system and it bugs me every time I need to eat something of theirs. I find myself scrabbling around on the back of the pack for the 3.5pt 'per 100g' details then have to fish out a calculator and endure some mathematic acrobatics to evaluate what my portion of a 326g pack will end up being in terms of carbohydrate. And it used to be just written there in big letters 'per serving'.

Of all the groups of people in the UK with a borderline obsessive interest in what food contains, the ones who stand with furrowed brow in supermarkets poring over pack labelling smallprint more often than perhaps any others are those living with diabetes. This initiative *could* have made our lives easier, it could have included GI indications as standard, and scored total carbohydrate as a proportion of Guideline Daily Amounts so that people went easier on carbs generally. Who knows - that could have saved 1000s of people from developing T2D in the first place if their metabolisms are already beginning to struggle. Instead we are stuck in the same old rut of sugar=bad, fat=bad, carbs=good which just isn't helping anyone.

I await next summer's pack designs with a heavy heart.

UK Food labelling consultation - have your say

Thanks to Dave (The Tangerine Diabetic) for his excellent writeup of Diabetes UK's Big Event (and also on Shoot Up or Put Up. Following his 'call to arms' I urge you to get involved with the public consultation on food labelling. The consultation ends on 6th August 2012. Have your say here right NOW!


Dear Sir or Madam

I have only today been made aware of the public consultation on the front of pack labelling as detailed here: www.dh.gov.uk/health/2012/05/food-labelling-consultation-launched/

Along with approximately 2.5 million other people in the UK I live with diabetes. I am one of the 250,000 or so people with 'type 1', the autoimmune version of the condition. As you may know food plays a pivotal role in the control of both type one and type 2 diabetes and in some senses knowledge about food eaten is as important as any medication taken - even injected insulin. I can't live without insulin, but I can't live without food either! Injected insulin needs to be balanced against the carbohydrate in food (that's all carbohydrate, not just sugar). Getting the 'sums' wrong in either direction can lead to unconsciousness/coma/death on one hand or blindness/kidney failure/amputation etc on the other. Food and diabetes represents a balancing act with both short term and long term perils waiting in the wings.

You have to to a LOT of back-of-pack squinting as a person with diabetes. I've been living with Type 1 diabetes for over 20 years and in all that time I can truthfully say that not a morsel of food has passed my lips without first being considered and evaluated in terms of its likely effect on my blood glucose level.

I would urge the committee to add more meaningful information to the front or packs by including CARBOHYDRATE rather than just 'sugar'. Even better would be a Glycaemic Index/Glycaemic Load indication (an average figure relating to how fast a food converts to glucose in the bloodstream). Both for people with diabetes and for those without *all* carbohydrate converts to glucose in the blood. What is not well known is that sugar, though it is energy dense, does not convert particularly quickly. Many foodstuffs sold as being 'healthy' and 'slow release energy' are in fact substantially faster to convert to glucose in the blood than sucrose (table sugar). Most 'healthy' breakfast cereals, for example are particularly poor in this regard. While this is of acute interest to those of us who are 'playing at being our own pancreas' it is also very important to everyone. Foods which convert rapidly to glucose cause a burst of insulin release and contribute to weight gain and cholesterol imbalance whether or not one has diabetes.

Adding 'Carbohydrate' to pack fronts, and indicating how disruptive a food is in blood glucose terms could be crucial in slowing and/or preventing many hundreds of thousands of people's slide into Type 2 diabetes, and would enormously help the blood glucose control of people already diagnosed.

80% of the NHS budget for diabetes is spent on treating preventable complications - helping people with diabetes make better food choices, and helping others avoid developing diabetes in the first place offers a significant opportunity to save millions and millions of pounds for the NHS at almost no cost.

Kind regards...

Scapegoats, Lobbyists and the Perfect Storm

Apologies for the recent flurry of posts. It's been one of those weeks! Last night I watched the first of the BBC's 3-part documentary 'The Men Who Made Us Fat' (available for the next three weeks on BBC iPlayer).

I had been eagerly awaiting the programme since reading an article in the Guardian that someone tweeted a link to (thanks Louise!).

I was not disappointed.

It makes me wonder if this is the year that people will look back on in the future as a real turning point in the public's understanding of the obesity crisis. This programme, the article and several others in the media in recent weeks are finally focussing on factors other than saturated fat when talking about problems with the modern western diet.

The programme focusses on the decisions made in the US in the 1970s which profoundly affect the current mainstream thinking on dietary health and what we eat today. Decisions which in the end seem far more based on economics and agriculture than health. I can't pretend to be any kind of expert on these things, having only a passing interest, but it was amazing for me to listen to a programe that (for once) did not just bang on about fat in the diet when talking about the western world's weight problems. Unsurprisingly Ancel Keys influence on the subject was covered. He, famously, took against saturated fat. According to the programme, on a trip to the UK in the 1950s he began to believe that saturated fat was at the root of the major health issue of the time - heart disease (cue grainy black and white pictures of toothy children scoffing fish and chips). He then set about proving his theory.

I have heard the name Ancel Keys many times before. I have seen his work vilified and passionately defended on several diabetes forums. Sadly, in the end I don't think it matters what he actually said or wrote at all. His proposals seemed to be based on a mediterranean-style diet with plenty of fresh veg and olive oil and only moderate carb intake. What happened is that when it came to the question, "What is causing all this heart disease, fat or sugar?" the incredibly powerful industry lobbyists had their scapegoat. Saturated fat became the enemy. There was no 'saturated fat' lobby. No specific industry to protect or promote. The incredibly powerful Sugar Association in the US (powerful enough it seems, to prevent the World Health Organisation from setting a maximum limit on recommended sugar consumption), and the political might of the US agricultural industry swept everything before them. The portions got bigger... The stuff we ate got sweeter (sometimes with lovely shiny 'low fat' labels)... The snacks were more relentlessly available... and our self control was, frankly, not up to it.

I'm not (quite) cynical enough believe that the soft drinks/processed food industry chose the cheaper corn syrup/glucose-fructose syrup/HFCS as sweetener of choice knowing that it turned off leptin, the chemical in your brain that tells you when you've had enough to eat. I don't think the fast food giants and food manufacturers cared about anything other than increasing their market share and selling more and increasingly refined and processed products. Having said that, it was with horrifying inevitability that the spokesperson for the US soft drinks industry said that she did not believe her industry's products had anything to do with the crisis in the western world's waistlines (despite being the single largest source of calories in the US diet).

For the last 40 years we have been told that fat is the enemy, saturated fat in particular. Carbs are good. Fat is evil. Attention is now finally veering towards sugar. And if you consider the 'Tsunami' of glucose that hits the bloodstream when eating sugary foods to be a bad thing, then perhaps it is worth reflecting that many of the things I have been told are 'starchy' and 'slow release' have proved anything but under examination from my blood glucose meter (even with the benefit of modern 'fast acting' analogue insulins to tame them).

I'm not some kind of be-sandalled ultra low carb evangelist. To be honest I have profound reservations about the extremes of viewpoint in any kind of discussion. But in a world where people with type 2 diabetes (essentially an intolerance to carbohydrate) are continually told that they must base every single meal they eat on the very substance which most rapidly raises blood glucose and threatens to fry their eyes, feet and kidneys it was refreshing to watch a programme that raised serious questions about our addiction to carbs in general and sugar in particular. At the risk of sounding like my parents - once again it seems that 'moderation' is the blindingly obvious, crushingly simple answer.

The next edition of the programme considers ballooning portion sizes. I can't wait!

Are you 'Type 1 Aware'?

As part of Diabetes Week in the UK, D charity heavyweights Diabetes UK and JDRF have launched a brilliant video which asks the question 'Are you Type 1 Aware'? It focusses mainly on those who develop type 1 diabetes in childhood and clearly explains the very obvious symptoms which are all too easy to ignore and/or be dismissed by busy GPs as parent paranoia. Having been diagnosed in early adult hood I know myself that it was several months of feeling really rotten before I finally decided I should go and get myself checked out by a GP.

Alarmingly some of the parents in the video share how close to death their children were before they were finally properly diagnosed.

Please share this video with your family, friends, parents, teachers and anyone you know who works with children or young people. You could save a life.

Watch the video on You Tube: www.youtube.com/watch?v=tYlQTylh_0M

More information on the symptoms of type 1 diabetes: www.jdrf.org.uk/type1aware

Family support for T2s

Way back when this blog was just beginning Jane wrote about the lack of support offered to families and partners of adult diabetics. Quite rightly there seems to be support available for parents of children with diabetes, but for those diagnosed in adulthood there seems little in place in terms of help and education unless partners, spouses or carers are able to push their way into appointments with the patient.

It seems that bastion of high street chemistry Boots is trying to change that, at least for the families of people living with type 2 diabetes. Research undertaken by Boots and supported by, among others, Dr Katharine Barnard, Health Psychologist and Senior Research Fellow at the University of Southampton suggests that families could be pivotal in supporting and motivating someone with type 2 diabetes, who at the very least should have access to good information about how their diabetes is treated and what sort of checks they should be receiving.

With 80% of the NHS’s 9.8 billion annual UK diabetes bill being spent on treating complications*, mobilising the wealth of latent support represented by these willing family members could prove a powerful weapon in better management of Type 2 Diabetes and in improving lives. Eight in 10 (81%) family members say they’d use extra support if it were available which is why Boots UK has launched a new Diabetes Information Service that not only provides support for people living with the condition, but also valuable advice and guidance for their families to help them start having better conversations.

* largely preventable

I get a bit nervous when these kinds of organisations start wanting to dish out advice to people with type 2 diabetes. Partly because I see so many people on internet forums who have a terrible time coping with their type 2 based on some of the questionable advice they get from their healthcare professionals! There was also a fairly disastrous campaign by Lloyds recently which provoked quite a lot of disquiet among diabetics by failing (as is often the case) to properly differentiate between types of diabetes.

I really hope this initiative goes well. A family which understands the crucial role carbohydrates play in the management of type 2 diabetes is less likely to say, "Oh surely that won't matter?". A family that understands how difficult type 2 can be to control is less likely to think, "It's only diabetes, just take a tablet and carry on as before". A family which all eats the same diet together make it easier for the person with diabetes to stay on the wagon. A family that understands the potential consequences of poor control will be better at motivating their loved through the dark days.

I haven't had a chance to see the Diabetes Information Pack, and have only briefly looked at the the information on the Boots WebMD website. Thankfully I didn't see much evidence of the usual "people with type 2 diabetes must eat lots of starchy carbs" nonsense, but I can't guarantee it isn't there lurking in the shadows so be wary. Encouragingly they also suggested that self-testing is important in the management of everyone with diabetes (well they do sell the equipment after all). If only we could get GPs around the country to feel the same way.

If you have a family member with type 2 diabetes how able do you feel to offer support? Comments please!

Disclosure: I was sent 'press release' information about Boots new Diabetes Information Service, but was not paid to write this post (I wish!)

Meter accuracy - the narrow window

I've been stewing over the question of meter (in)accuracy over the last few weeks after my experiences with the iBGStar. Possibly because throughout much of April my levels have been a bit wobbly which often puts me in a grumpy frame of mind as Stacey at www.portablepancreasgirl.com noticed. Not helped by the report today that suggest 80% of the massive NHS diabetes budget goes on treating (largely avoidable) complications.

In our fight to avoid complications our 'window on the world' of how our choices are affecting our bodies are blood glucose (BG) meters. BG meters currently have to meet accuracy criteria set by the International Standards Organisation in order to pass muster. This is a good thing.

But...

According to ISO15197 the required level of accuracy for BG meters is +/-20% against lab results 95% of the time. So the very best they need to aim for is that a lab reading of 7.0mmol/L (126) would show as somewhere between 5.6 (100) and 8.4 (151). And 5 times out of 100 it could be much worse. In other words testing at 5.6 and then 8.4 just 5 minutes apart using the same meter with the same pot of strips (or even seconds apart from the same drop of blood!) would pass the International Standards Organisation criteria for accuracy.

Similarly under the requirements 3.2 (58) and 4.8 (86) could be identical readings from a lab test of 4.0 (72). But 3.2 and 4.8 are not the same as far as anyone trying to manage their diabetes is concerned. One is 'reach for the jelly babies' time, the other is 'nothing to see here', while the actual result was 'better keep an eye on that'.

With modern diabetes management techniques we have the potential to manage our condition with a level of accuracy which should guard against complications. But the snazziest insulin pump and whooshiest rapid analogue insulins are being let down by a sloppy data feed.

To play it safe perhaps I should adjust my pre-meal targets to take account of potentially errant readings. So lets see... with a 20% buffer at either end that gives me a target 4.8 - 5.6 (86-100). Aim for that narrow a window? Hmmmm, perhaps not. Unless I want to drive myself mad.

Fortunately most meters far exceed the required level of accuracy most of the time. But as for the 'official' requirements... Good enough? No I don’t think so really.

BBC: Designer diabetes drugs 'cost NHS millions'

http://www.bbc.co.uk/news/health-14999853

There are many hopelessly inaccurate news stories published about diabetes, too many to count, but this is the first one whose tone was so indefensibly vile that I have been moved to immediately write a letter of complaint. Accurate and impartial this wasn’t. Not even close.

If I try really hard, and because I know a good deal about the subject I can just about glean the real story here - that some people with diabetes are being given different treatment options in the wrong order. If I read through layman’s eyes, I'd see everyone with diabetes as a scandalous leech on the NHS’s purse. A costly and, if I build in information from most other media coverage (including that on the BBC), largely self-inflicted plague on society.

I read a lot about obesity causing diabetes. I read a lot about the ‘lifestyle’ disease. I don’t often read that only around 10% of those classed as overweight or obese in the UK are diagnosed with diabetes. I never read that a significant proportion of people diagnosed with type 2 diabetes are normal weight or underweight at diagnosis, and that those who are overweight have in all likelihood been gaining weight for some time as their body begins to struggle to metabolise carbohydrates. I rarely if ever read a media article that properly distinguishes the metabolic disorder and autoimmune disease. The recent Diabetes UK campaign to highlight the huge number of people with diabetes in the UK who are not receiving the basic checks to ensure their health went largely ignored. It is suggested that 90% of the cases of sight loss in diabetics could have been prevented with earlier identification and treatment.

But those things don’t fit the default media’s diabetes stereotype of “fat, lazy and all their own fault”.

I have been using insulin as a treatment for diabetes for over 20 years and I wish to point out to Helen Briggs that there is no such thing as a ‘designer’ insulin. Insulin is not something I choose to match my summer wardrobe. This is not some flimsy, inconsequential part of my life. All insulins are not the same. Diabetes is a complex condition to manage. Whether type 1 or type 2, every single mouthful one eats has to be considered. For those using insulin, particularly rapid-acting analogues, the timing, dose and activity curve of the insulin needs to be matched as closely as possible with the likely absorption of carbohydrates in food, while factoring in exercise, illness, stress, even ambient temperature.

The target blood glucose range that I am asked to hit is so tiny that the permitted BG meter inaccuracy of 10-20% almost entirely covers it. And if I stray very far outside that target? Blindness. Kidney failure. Nerve damage. Heart attack. Loss of limb. Coma. Death.

The benefits of using the very best treatment options available to me are not ‘modest’. My circumstances are not ‘exceptional’.

The potential consequences of using inappropriate treatment options to save the NHS ‘£625 million over 10 years’ in the short term, could cost the NHS a great deal more in the treatment of unnecessary diabetic complications. I have been diabetic long enough to pre-date analogue insulins. I’ve used the cheaper human formulations and they are not ‘just as effective’. Not for me, and not for many others.

I accept that diabetes is costly to treat. I accept that incidence is increasing and that this raises concerns over the future cost to the NHS of treatment. What we need though is better treatment. Better education. And above all better, more balanced, more informed coverage in the media.

Enough of the diabetes-bashing.

Shame on you BBC, I had thought better of you.

Diabetes bashing on Channel 4 News

UK diabetes forums erupted in indignation yesterday following a report on Channel 4 news.

Channel 4 News - Diabetes: the insulin investigation
While on the subject of health, I should mention that later in the programme we have a completely sensational film about diabetes and the high cost of a new form of insulin.
Diabetes already costs the NHS £9bn a year - our investigation has discovered that these new insulins - now used by millions in the UK - only offer minor benefits compared to older versions. Meanwhile they are costing us tens of millions extra annually.

The film exposes what some see as an attempt by big pharmaceuticals to transfer the world's diabetes sufferers onto an insulin which has only modest advantages for most patients - but is very profitable for the companies who make it.

I didn't see the report when it aired but thanks to the wonder of the interweb I was able to watch it today. This put me in the strange position of beginning to work out what I felt about it before I'd seen it.

Initially I wasn't sure what everyone was so upset about. But then I watched it.

The real shame is that the actual story is quite interesting. I didn't realise, for example, that there were more type 2's using insulin than type 1's (at least this is what was inferred in the report). I suppose it is possible since the number of type 2's is so much higher that even the relatively small percentage of those who use insulin therapy do indeed outnumber the total number of type 1's (who all use insulin), but it was still a surprise.

For type 2's using insulin the report suggests that many (most?) patients would get very similar results using older human insulin formulations as they do with the newer (and significantly more expensive) analogues. It was not made clear how this had been researched. If you watched very carefully, and if you already know a great deal about the subject matter you might just about have been able to glean that none of this is the fault, or choice of the patients. That it is the Big Pharma reps who stroll around hopitals wooing DSNs and diabetes clinics so that analogues become the default choice. That those specialist nurses are often far less familiar with the older formulations and do not feel confident in putting patients on them. There's no point in keeping patients, particularly diabetics, on older ineffective therapies because the short-term savings will be far outweighed by the cost in treating the diabetic complications that will follow. Similarly there is no need to prescribe insulins which cost 2 or 3 times as much if a more cost effective medicine provides the same therapeutic benefit. Which variety of insulin a patient uses should be a decided by clinical need, not some lazy default choice and certainly not purely on the encouragement of a Big Pharma rep!

Sadly, I suspect almost no one understood this from the report. Especially if they have heard or read pretty much anything else about diabetes in the last few years in the media. Because there is a very real, very big problem with the way matters concerning diabetes is reported in this country. In my experience the thrust of pretty much every article is in one of two directions.

1. Diabetes is very, very expensive to treat and it is costing the NHS (and that means you dear reader) an absolute arm and a leg in taxes.
2. Diabetes is caused by eating too much sugar and/or fat. People who get it are fat, lazy and only have themselves to blame. Now see point 1.
   

Occasionally the journos might throw in some other snippet about it being 'cured' by eating your own earwax or something similarly ludicrous, but by and large it seems to be either 1 or 2 or a combination of the two. And the more exaggerated and terrible they can make the story the better.

So it is into this terribly mis-informed world that yesterday's news report lands. Did they take the opportunity to explain some of the complexities of the condition? No. Did they carefully explain which of the many types of diabetes were affected? Not really. The focus was unnecessary cost and unless you know different already you would assume that the problem lies with every diabetic. Indeed many outraged comments from diabetics suggest that even those 'in the know' were mightily confused.

It didn't help that they began with a headline figure of the £9 billion. That is a whole lot of NHS money, and it goes on treating diabetes in the UK. Having got the really juicy, scarily big number out there they then threw about lots of other costs and figures. £300 million a year on insulin, and later £250 million potential saving. What? You could save almost the entire cost? Ah no! Sorry, you weren't listening carefully... the £250 million was over 5 years. So that's £50 million a year. Still not to be sniffed at, but sensationalist journalism and quite misleading.

Part of the problem, of course is that nothing about diabetes is easy.

The media don't understand it. They don't feel the need to understand it. It's a Big Problem and rather than take the trouble to research it properly they can stick with what they know (see points 1 and 2 above).

It seems to me that diabetes is an umbrella term for perhaps dozens of different disorders - Type 1, LADA, MODY, Gestational, Double and of course Type 2 the media's favourite Big Target. Some types quite are closely related, others very, very different and I've read that Type 2 is really just another umbrella term for a very large number of sub-types. The reporting, though, only ever talks about 'diabetes' as if it were some sort of indivisible whole. There was a passing mention of type 2 last night (about halfway through) but no explanation as to what that meant, or how and when a person with type 2 might be put on insulin. There was no clear explanation given about when the more expensive insulins are particularly effective and well worth the extra cost. Again and again different talking heads just repeated that 'the old stuff is just as good, and it's so much cheaper!'. Particularly misleading was the repeated blurry white-room shot (sourced from an image library by the look of it) with several young twentysomethings injecting into their abdomens. A group of people who seemed pretty much your archetypal type 1's to me, illustrating a report about insulin therapy in type 2.

The tragedy is that, from my type 1 perspective there seems to be a significant problem with the way type 2 diabetes is treated in the UK. Many of the type 2's in question will now be using insulin because their diabetes has progressed through treatment by diet and exercise, then oral medications and finally to insulin. They will probably have been refused prescriptions for blood glucose strips by their GP (even though the NICE guidelines mentioned in the report support SMBG - Self Monitoring of Blood Glucose in motivated individuals). Many will have been told they don't need to test, an annual HbA1c is enough. Without the ability to monitor what happens to their blood glucose levels when they follow the dietary advice they are given they will not have known how catastrophic it can be. In it's most extreme form "eat lots of starchy carbs with every meal" I have heard accounts from type 2's who actually began to eat more carbohydrate after diagnosis believing it will keep them healthy. More carbohydrate = higher blood glucose = more damage and excess glucose stored as fat.

Now if the £50 million a year saving was reinvested in test strips for type 2's. And proper education was put in place to help individuals establish the level and types of carbohydrate that their bodies can tolerate (because every diabetic is different), perhaps the 'inevitable' progression towards insulin, for some at least would be slowed. Maybe for others it would be reversed. I have heard of many type 2 diabetics who have moderated their carbohydrate intake by self-funded SMBG and have been able to reduce and then stop oral meds altogether. And at least one who appears to have recovered normal pancreatic function almost entirely.

Now that really would save the NHS some cash.

Curious? You can watch the report here.