Shoot Up or Put Up

People who read this blog for a long time (you poor souls) may dimly recall that in September 2009 I wrote an article where I mentioned I would be getting a pump (it’s here, if you don’t remember it).

You may also dimly recall that I was a bit eggy about having to wait eighteen months (or 2.8% of my lifetime, I cleverly calculated at the time) to get the damned thing. I swore blue murder and mentioned that I would write to all concerned to remedy this crappy state of affairs.

Well, months passed, and I did indeed write to my MSP (health is a devolved matter and so is handled by the Scottish Parliament rather than Westminster) and the chief big cheese of my health board. I’m pleased to report that I achieved absolutely nothing and, in fact, I hear ugly rumours that since writing my original article the waiting list for pump therapy in the Lothians has now increased from 18 months to three years. Very not so good.

Anyway, time has now elapsed and I’ve been given an approximate start date for my lovely new pump – sometime in November. So that’s something to look forward to, an early Christmas present of sorts.

I’ve also been given a choice of pump. The decision of which pump to go for was, in the end, a pretty easy one as I was given a choice of *drum roll please* one. The Medtronic Veo or the Medtronic Veo. Fortunately I hear it’s not actually a bad pump and I suppose it does cut down on training costs – apparently the reason for the long waiting list. The probable fact that apparent difficulties relating to training is an excuse for rationing and limiting the supply of expensive pumps is, of course, neither here nor there.

As we all know, pumps aren’t a magic wand for good diabetes care. I’m not expecting it to magic my diabetical problems away in an instant (and anyone that does is somewhat deranged). However, I do think pumps are a more subtle and versatile tool for trying to manually replicate what your pancreas does automatically (well, it would if it worked!) which is, after all, what we diabetics are trying to do day in day out.

So there we have it – the end of the pump saga is gradually hoving into sight. No doubt I’ll keep you all updated with further developments as and when they eventually happen.

According to the BBC, everyone’s favourite pharmaceutical company Novo Nordisk is withdrawing its insulin products – including Levemir & NovoRapid – from Greece after the Greek government ordered a 25% price cut in all medicines due to their current financial difficulties. You can read Aunty Beeb’s full article here: http://news.bbc.co.uk/1/hi/world/europe/10189367.stm

Being evil, I always like to stick up for the capitalist overlord – after all Big Pharma is a huge business, it’s not a lovely, fluffy, ickle-wickle charity. But if I were a Greek diabetic I would find this move by Novo Nordisk somewhat unnerving. It’s unlikely that we’ll see pancreatically-challenged hoards dying the streets – there are other insulins available after all and I expect grey imports of Novo Nordisk products into Greece will flourish – but it does represent a reduction in choice of the insulins that are available. This is obviously not good.

It remains to be seen whether the other members of Big Pharma will follow suit and, if so, it’s rather disconcerting for all of us with broken pancreases. I don’t know about you but I find the thought of my insulin being withdrawn from sale somewhat unpleasant – after all we do all rely on it to live and I, personally, quite like living.

So it’s something I think we should all watch closely. And immediately start stocking up on our life-giving insulin! And keeping our stashes under (refrigerated) lock and key; and nailing rough pieces of timber over our doors and windows; guarding our supplies while clutching – sweaty, watchful and paranoid – a loaded shotgun!

However, it’s not all bad for Greek diabetics – there is a ray of sunshine amongst these gloomy clouds; the BBC reports that Novo Nordisk is making glucagen available for free. Which will be really very useful in bringing those high blood sugar levels down. Mmmm.

BBC article – http://news.bbc.co.uk/1/hi/world/europe/10189367.stm

The House of Commons, yesterday

Now the election in the UK has been won (sort of) a whole new load of MPs are moving into their new offices in the House of Commons, all of them blissfully unaware of the pancreatically-challenged hordes out there.

Of course, viewers in Scotland will have the same old MSPs until 2011 (health being a devolved matter); but for the meantime we’re going to ignore them (along with the Welsh and Northern Irish Assemblies). Hope you don’t mind.

Anyway, my thinking is this – all these new MPs need to be educated about diabetes, the problems that it brings and the issues in diabetes healthcare which concern people with broken pancreases. They’ve got other things to worry about – such as insanely large budget deficits – and they’re not going to do any research into moderately obscure medical conditions themselves. Therefore, we need to write to them to tutor them in the dark arts of the pancreas.

Our friends at Diabetes UK, JDRF and so on are very good at doing this sort of thing; but I do think nothing beats a personal letter to your MP to reinforce the point. It’s all good stuff.

However, the downside is that letter writing is somewhat tedious at the best of times; therefore here at your soaraway Shoot Up we’re toying with putting together some template letters for you to use. Unedited template letters are pointless, but they do form a useful framework to which you can add your own personal experiences of diabetes. And the more personal they are the better.

But we need your help. In general, given Shoot Up has a bias towards Type One so will the letters (sorry Terry – our token type two!) But what things about diabetes care concern you? What themes should letters cover?

So, for example, does a lack of DSNs make getting help and advice impossible? Are clinics too infrequent and difficult to get to? Are newer technologies – such as pumps or CGM – not available in your area? Do you want your health care provider to concentrate on good day-to-day care, or do you want them to strike out for a cure?

So many questions – let us know what you think now!

Election poster in Edinburgh South West, yesterday

As I mentioned in my earlier post, the UK is currently gripped with election fever. Readers in the UK will be all too aware of this, with election coverage polluting the airwaves at every turn; so I merely include this for our readers from abroad who don’t listen to the BBC World Service and haven’t been made aware of the latest electioneering thrills and spills. You’re missing out, you really are.

Anyway, I digress already.

In general I feel quite sorry for Members of Parliament. Aside from the famous ones that get on the telly, most seem to spend their time being photographed opening boring dog homes, visiting dull businesses and have the thankless task of responding to a zillion letters every week from bitchy constituents moaning about their pet hates. The pay is okay, but they probably could earn more in pretty much any other job. And now they can’t even pad out their expenses claims any more. Ahhhh!

You’ll note that I said I feel “quite” sorry for MPs. But not sorry enough to not encourage you to harass them about diabetes-related issues!

We all know that diabetes care around the UK is variable. Pumps are handed out like sweets in some areas, while in other you can wait half a lifetime to get one. Some Primary Care Trusts ration test strips for Type Two’s, while others don’t. Rules on food labelling are pretty weak and the agenda is dominated by the food industry. Type Ones can only get a three year driving licence. And so on and so on and so on. In other words, if you’re diabetic there’s a national issue which will touch you personally.

So it’s therefore imperative to speak to your potential representatives in parliament and remind them about diabetes issues. Diabetes UK have made doing just this insanely easy by automating the process here:

http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=82&ea.campaign.id=5859

Once you’ve completed your details, magic technology™ will generate a letter to the people standing for parliament in your constituency. As always, however, form letters are not perfect. So if you use this system I would strongly suggest you modify the template before sending it. Why not add further details about something that’s particularly personal to you? Perhaps your experience of diabetes care is very bad or, indeed, very good in your area. Or there might be an issue that particularly gets on your nelly.

The system works for England and Scotland. People in Wales and Northern Ireland will just have to contact their candidates manually – theyworkforyou.com is a useful site to help you do just that. Viewers in Scotland will of course be aware that health is a devolved issue and so this will be more of an issue in the Scottish elections in 2011.

Anyway, wherever you are in the UK, they work (or will work) for you, so let ‘em know what you think!

Links:
Diabetes UK campaign
They Work For You

Read on – you need to do something here, it’s important.

I have on occasion had a cynical little rant about the relevance of some diabetes research to improving lives today.

I have also spent many a meeting in various diabetes forums expressing the need for us to research the day to day issues impacting people with diabetes.  A cure - like a lottery win and a trip to the moon - would be marvellous but not something I’m scheduling in my diary any time soon. What I’m really interested in is answering the slightly less sexy but still hugely useful questions about diabetes.  How do we get new developments in diabetes care into general use more quickly? What is the best way to help a teenager take over management of their own diabetes? Do low carb diets deliver long term diabetes benefits? ie is it worth me making the huge sacrifice that is giving up pasta?

So you can imagine my excitement when I saw this little beauty in Diabetes UK’s Balance magazine. The Type 1 Diabetes Priority Setting Partnership is trying to identify the most important research questions for the treatment of Type 1 diabetes. Hurrah!

People of the diabetes online community, please head on over to www.ukdrn.org/jlasurvey.html forthwith, or at least before 28 May 2010. This is your chance to have a say in the diabetes research agenda. It’s a really simple survey, they just want to know what questions you want answering about Type 1 diabetes. To actually be asking people with diabetes what research they’d like doing is sadly quite radical, so please seize the opportunity to have your say. We’re the experts in our own diabetes so make sure you share that expertise.

And once you’ve submitted your questions to the survey, if you fancy sharing them in the comments section below that would be great – I’m fascinated to know what questions people want answering.

Voting in the Edinburgh South West constituency, yesterday.

You’d have to be a real moron to have missed the fact that a general election is currently underway in Britain. As I was away on holiday in sunny Yorkshire when the announcement was made, I remained completely ignorant of the fact until my return to Edinburgh. Which just goes to prove some point or other.

Anyway, you’ll be pleased to hear that I’m not going to burble on about the different political parties here. I’m the very definition of a floating voter and I generally decide for whom I’m voting when I get to the Polling Station. So no deeply-entrenched partisan views to bore you with!

However, it is clear that good old Blighty is somewhat cash-strapped at the minute and this is of concern, I think, to the pancreatically challenged hoards. No party in their right mind would cut spending on the NHS before an election. But once the next Parliament forms I think we’ll start seeing cuts on public services and the NHS will be a prime target – despite what some parties are saying about “protecting the NHS”. The inescapable problem with the NHS is that while it’s wonderful, it’s also bloody expensive.

So what do spending cuts mean to us? I shouldn’t imagine we would ever see cuts on really important stuff, like basic insulin supplies, but I can see some of the luxuries being trimmed. Perhaps the 18 month waiting list for a pump in Lothian will become a 24 month waiting list. Maybe Type Two’s will have their allowance of test strips (even more) limited. The prospects of getting CGMS funded by the NHS being reduced from “unlikely” to “when Hell freezes over”.

I believe that the availability of technology like pumps and CGMS is a really good think for diabetics. When you’re trying to manually recreate what your pancreas does automatically I’m afraid that injections and 5-a-day testing just doesn’t cut the mustard. We need better technology and equipment to help us maintain good levels.

So I’m somewhat pessimistic about health care provision whichever party gets in on 6th May. But I can guarantee that whoever’s unlucky enough to be my MP will quickly hear from me about diabetes issues before he’s* got his feet behind his new desk. Rrragh!

* I’m not being sexist by excluding “or she’s” here; we only have male candidates in my constituency. So there.

Here at ShootUp we believe a healthy dose of cynicism is as important a part of living well with diabetes as insulin, carb counting and a balanced helping of optimism. 

I’ve already admitted the cardinal sin of not being excited about a cure and questioned whether the sexiness of finding a cure distracts us from providing decent care today.  Now it seems that there are more super cynical Brits around.

Fellow Brit Caroline is a little underwhelmed by the hype around the artificial pancreas. I’ve been meaning to write an article about the issues facing the artificial pancreas for a while, but this one is a really well thought out look at the reality of the situation that I certainly couldn’t improve on. Enjoy!

I spent a lovely Saturday evening in a pub in Edinburgh with some of our readers. Amongst other things we chatted about local diabetes care.

Tim has a letter from the Chief Executive of NHS Lothian telling him that they deliver the best diabetes care in Scotland. Marvellous. When they deliver diabetes care that meets all the national guidelines they can have a gold star. Until then, being the best of a bad lot isn’t something to celebrate.

Around the table in the pub were three people on an 18 month pump waiting list, people who hadn’t even been on a DAFNE course, and a terrifying anecdote I really hope isn’t true about there being an 11 year wait for access to DAFNE training in Glasgow. An eleven year wait for basic education to help you live with a serious chronic disease? It’d surely be easier just to chop off your own feet immediately and give up.

I travelled home on Sunday night pondering what could be done to improve the situation. I’m a big fan of the NHS but it works best when people like us drive it to deliver. I’m hoping those people sat around the table on Saturday night will be going to speak to their NHS healthcare funders to encourage them to start delivering.

Then, like an apparition, I saw this on the interweb “New Edinburgh diabetes lab brings promise” . Aha I thought, they’ve cracked it. They’ve worked out how to deliver excellent diabetes services at an affordable cost to the Scottish masses. Soon my fellow drinkers will be accessing excellent care rather than whiling away their years on waiting lists.

This doesn’t happen often, but I was wrong. Edinburgh is getting a new lab to provide “revolutionary diabetes treatment for sufferers of type 1”. This life changing place will be the Scottish Islet Isolation Laboratory.

Marvellous stuff. I’ve nothing against progress and I’m sure one day islets may/may not deliver some/lots of benefit to some/all of us living with diabetes.

I do wonder though what makes you prioritise something like a new islet cell lab over delivering great healthcare to people struggling to live with diabetes today? Would it be cynical of me to suggest that islets are just a little bit sexier than delivering basic education and healthcare? That perhaps “I cured diabetes” looks better on your CV than “I helped Rachel manage her HbA1c and live a long, healthy life”?

Of course we need investment in future treatments for diabetes, but we also need to quickly and effectively use the proven treatments we already have. Forgive me if I’m not bouncing off the walls with excitement over this new lab. I may be dull but seeing people being given the help they need today to live long, healthy, happy lives with diabetes is what really floats my boat.

I recently did an interview for a diabetes magazine (yes, another magazine – we’re getting really big now in diabetes celebrity circles; such as they are). And I was asked what single development would make life easier for me as a member of the pancreatically-challenged hoard.

I did think about a new pancreas grown from stem cells, but I just don’t think science is advanced enough to come up with a proper cure for diabetes in my lifetime (or what I expect my lifetime to be – obviously even I don’t know how long I’m going to live). When you think about it, science has had 90-odd years since Banting & Best successfully stopped killing dogs and discovered insulin to come up with a complete cure. Although there have been leaps and bounds forward since then, science hasn’t even yet managed to come up with a long acting insulin that actually delivers consistently and smoothly for a full 24 hours (yes, we’re talking about you lantus). So I’m afraid that I think cures are still a long way off.

So I side-stepped the question by answering that incremental improvements to existing systems actually make life a lot easier for people with wonky pancreases. Take for example blood glucose meters. I’m a huge fan of Abbott’s FreeStyle Lite as it uses a tiny sample, is stupidly quick to process your result and is just generally well designed and thought out.

When you compare this to the medieval instruments of torture that were used not that long ago for measuring BG you can see that the world has moved on enormously and checking your BG is now ludicrously easy and relatively pain free. Given that a Good Diabetic will check their BG 4, 5 or 6 (or more) times a day such seemingly small changes to meters make a huge difference to the quality of our lives.

Similarly, faster acting insulins would be hugely beneficial. Humalog is pretty good stuff, but I still have to stick it in about 20 minutes before breakfast to avoid a massive post-port and pheasant peak (there’s nothing like a good, well-matured roast pheasant and a flagon of port for a good start to the day. The sort of breakfast empires were built upon, God be my witness!).

Anyway, so that’s what I’m hoping for the future – not a cure – but lots of little incremental improvements. Each one might not be wildly noticeable by itself, but cumulatively they’ll make a huge difference to our everyday, mundane, shuffling lives.

Swine flu - these guys started it!

Later today, you’ll be thrilled to hear, I’m off to the doctors to go and get my swine flu jab. I mentioned in my earlier post about seasonal flu that last year I did manage to successfully contract flu (proper flu I mean, not “man flu”; no, honestly) and I vowed never to miss a vaccination again. The sweats, weakness, aching, misery, despond and despair caused by flu were just far too horrible to contemplate ever having again.

So I’m therefore looking forward to an injection given by someone else for once (ohh, luxury!) and a slightly aching arm. This is clearly more than fair recompense from protection from the oinking disease.

When I was a small child, many, many years ago I would occasionally have philosophical moments (well, as much as a seven year old can have philosophical moments) and wonder what the future would be like. Say in 2009. Hovercars would be pretty cool, entire meals in a pill would be great but, even then, I thought the traditional silver space suit would be perhaps a little impractical and perhaps somewhat dull.

Sadly, none of the things I imagined have come to fruition – we don’t holiday on the moon or travel through time like Doctor Who (which is probably a good thing, given the scrapes that can result from inadvertently opening worm holes in fourth dimensional black holes and messing with the space-time continuum (apparently)). So maybe we’re just living in a stagnant technological backwater of the early 21st century with little to show for the last 25 years.

Then I thought about swine flu for a moment. Back in April swine flu was a brand new strain of influenza that hadn’t been seen before. Now, by November, that new strain has been isolated, genetically sequenced, a vaccine has been engineered, thoroughly tested and is available in my local surgery. When I think for a moment about that I’m utterly amazed. That vaccinations can be made available to the public within 6 months of them turning up on the virus-scene is utterly flabbergasting.

Similarly with diabetes, in merely 90 years we’ve moved from the single option of slow, unpleasant death (never ideal) to having a choice of a whole range of artificially engineered insulins which work extremely well and give us pancreatically-challenged hoards pretty much a normal life. Similarly blood testing equipment and other accessories having moved on massively in recent years – tiny blood samples, three second results and so on. It’s genuinely amazing.

We might not live on the moon, like I imagined at 7, but – by crikey- when you think about it for a minute we’re living in the future right now. Cool!