Fight For Flash in Bristol - Diabetes UK

The last remaining island of 'NO!' in the South West

It was great to get together with 30 or so people with diabetes and DUK folks last night in Bristol to consider how to challenge the local behemoth BNSSG CCG (Bristol, North Somerset, South Gloucestershire) to rethink its current 'flat no' position on prescription of Freestyle Libre in the city and surrounds of Bristol.

The event was organised by local legend and all round good egg Sandra Tweddell, who works and campaigns tirelessly to improve the lives, opportunities and experiences of PWD. Sandra called on the wonderful folks from the South West office of Diabetes UK who set up and supported the event.

Bristol's expansive CCG extends to areas around the city, and depending on which of the maps I found online are the most up to date is either one of the last or absolutely the last CCG in the South West to approve Freestyle Libre for prescription. The CCG initially dismissed Libre despite strong support from local specialist diabetes Consultants and DSNs who submitted a very strong case document outlining the potential benefits and cost savings, and national position statements from RMOC, Diabetes UK and the Association of British Clinical Diabetologists.

It is slightly irritating that Bristol suggests 'lack of evidence' as one of their main reasons for denying access to Libre since it was only this year that Bristol finally stopped supplying homeopathic treatment on the NHS. One of the last areas in the country to stop funding a treatment for which there appears to be absolutely no robust scientific evidence at all. Their other, and cynically I might suggest more pressing reason, is a substantial budget deficit. An eyewatering £58 million black (or possibly red?) hole in their finances which is inevitably applying significant pressure on their committees to not pay for anything they absolutely don't have to. It is also striking that while Bristol has internationally recognised specialists and expertise in diabetes research, some of the outcomes for treatment leave a lot to be desired - our record for lower limb amputations ranks as one of the worst in the country, for example. 80% of the UK entire budget spent on diabetes goes on treating complications of living with diabetes. When it goes wrong, we are very expensive to treat.

Dividing into small groups to brainstorm.

The event attracted a wide variety of people, from those diagnosed 40+ years ago, to others with less than 12 months of pancreas impersonation under their belts. After a brief introduction by Diabetes UK's Stefan, we gathered in small groups to brainstorm ideas on 3 different questions: Why do we think the CCG is denying Freestyle Libre in the area? What could we do to convince the CCG to change their minds? and Who could help the campaign?

An absolute torrent of ideas followed. The CCG's position seems fairly entrenched at present and revolves around a perceived lack of evidence, very real financial constraints and perhaps a lack of understanding of the nature of diabetes and how a piece of monitoring technology genuinely can help. Encouragingly discussions inside the CCG are still ongoing (perhaps they are already feeling the pressure) and Diabetes UK is meeting with them later this month. We seem surrounded by people who can help to remove the postcode lottery - several of whom are in positions of significant influence. Everyone's second favourite NHS England Associate National Clinical Director for Diabetes, Partha Kar is making 'gloves off' murmerings where CCGs are resisting Libre and maintaining the postcode lottery, while Keith Vaz and the APPG are mustering Parliamentary support.

As Libre has rolled out across the country and clinicians have begun to share the transformation in quality of life and hard-data outcomes that Libre is bringing to their patients, there surely will come a point where these can no longer be dismissed as merely 'anecdotal'. We were keen to find out exactly what was 'lacking' about the evidence that the CCG had already reviewed, and specifically what sort of evidence they were looking for.

It was great to see the enthusiasm in the room. A real desire to challenge the decision, to clarify the potential benefits to the correct population of PWD (and the potential cost-savings that can result both in the short, medium and long terms). Added to which the annoucement of a CE mark for Abbott's shiny new Libre2 at EASD this week which offers the option of alerts and alarms that many Libre users have been wanting for so long. And the current news seems to be that Libre2 sensors and its reader will cost exactly the same as Libre1.

The meeting closed with commitments to keep up the pressure, write to MPs, involve the local press, liaise with local HCPs and specialists. There are plans to gather more information and case studies of the benefits & cost savings other areas are experiencing (particularly where these include substantial short-term savings eg for hypoglycaemia and DKA admissions). There was also a genuine desire to try to get in front of the CCG in person and/or as a group. I may have accidentally suggested going mob-handed to the CCG AGM or a similar public meeting dressed as Jelly Babies. A Flashmob, if you will.

Watch this space.

#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.

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)