Shoot Up or Put Up

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!

Fashionable terrorist-chique

I was recently reminiscing about my childhood with some friends.

I grew up in Northern Ireland during the 1980’s amidst the chucklefest that was The Troubles. I usually say we lived in Belfast, but in fact we lived in the leafy suburbs of Cultra – which, as anyone who knows the area will attest, is not exactly the Falls Road. However, despite that, we lived in a house with bulletproof glass windows, barbed wire along the 6ft fence and reinforced gates.

As we chatted about this, I remembered that Sinn Féin was often described as the political wing of the IRA. Therefore it sort of followed that the IRA was the terrorist wing of Sinn Féin. Leaving the heady days of Northern Ireland behind, I wondered whether other organisations could have terrorist wings.

In the UK we diabetics have problems with the NHS, health boards and funding and our chums in the USA have endless issues with healthcare funding and insurances companies. There are clearly plenty of targets, so why not form a diabetic terrorist organisation? We’re all (moderately) clever, well organised and pretty damned fanatical about diabetes – so I can’t see any problems there. We could call it the PCA – the Pancreatically Challenged Army.

I don’t know about you, but I’m somewhat squeamish about real terrorism – I’m almost certain I couldn’t dole out a punishment beating to a health board executive, kneecap a drug rep., or plant high-explosives in an insurance company headquarters.

So I’m thinking more mischief than real terror – rude things said on blogs, seven thousand simultaneous requests for free meter samples, excrement trebuchets, live monkeys released into buildings – that sort of thing. No one will get hurt – just a bit smelly in the case of the fantastical poo-catapult.

So what would an active global campaign by the PCA achieve? Absolutely nothing. In fact it would probably set back the diabetic cause by years – rightly creating waves of public outcry, criminalising those of us with wonky pancreases and leading to sanctions on critical diabetic supplies such as Fruit Pastilles.

But isn’t it just great to fantasise about for just a moment? Turned down for pump funding yet again? Can’t get the number of test strips you need each month? One encrypted message to your nearest underground PCA cell and terrible revenge would be wreaked on your behalf. Oooooh, now that feels good.

Stock image of insulin, tenuously used to illustrate article

Despite my championing multiple daily injections in a previous article, I have to finally come out and confess that I’m getting a pump. Eventually.

Back in the heady days of July, I popped along to my diabetes clinic and spoke to the specialist diabetes nurse about pumps. We discussed my diabetes and the problems that I have with it – the main problem being my BG range is huge – first really high, then really low.

We then had a chat about pumps in general and discussed the research I had done and how I thought one could help me to level out my BG, so that the graph of my results could resemble something less like a profile of the Himalayas. We also had a fiddle around with a pump and got very geeky about how they could be configured and programmed to precisely match my insulin needs. After an hour or so of jolly chat we both reached the considered conclusion that pumps were very definitely the Way Forward.

A month later and I received confirmation that lo! I had indeed been placed on the waiting list for funding and training. The email also casually mentioned said waiting list was eighteen months. Grr.

I would, in other words, have to wait until 2011 to get my pump. By then I would have reached the ripe old age of 34 and would be 2.8% of my lifetime closer to the cold, unforgiving grave (assuming I get my full three score years and ten). I was not, and indeed am still not, pleased.

As I have a legal background in contentious stuff (to use a technical term there) and having been educated in the “Alison Finney School of Badgering Primary Care Trusts” I have decided not to stand for this. This is not because I want to skip the queue to get a pump ahead of everyone else – I want anyone who needs a pump to get one quickly. Healthcare provision is partly about serving the patient’s needs and unless patients let their healthcare providers know what their needs and expectations are nothing will ever change.

Realistically I’m not expecting the NHS to hand pumps out like sweeties (sweeties and diabetes never mix, after all) but it’s not unreasonable for diabetics to get the healthcare support and resources that they need. Especially when an increasing number of studies have shown that provision of pumps and good healthcare lead to fewer complications, which in turn leads to lower healthcare costs in the future. In other words, spend a bit more money now and save a hell of a lot later.

As I mentioned in my article about pumps being debated in the Scottish Parliament, Scotland seriously lags behind the rest of the western world in pump provision. Out of population of five million, only 416 people in Scotland have pumps for goodness sake! Scotland and the UK really do need to be dragged into the 21st century in relation to diabetes care.

So what have I done so far? As a starter for ten, I’ve corresponded with the various groups that support pump users including iPAG Scotland, the tireless Lesley at INPUT and Diabetes UK Scotland. In addition, I’ve written to my Member of the Scottish Parliament (health is a devolved matter – so Scotland deals with it, rather than Westminster) and asked for his support, which he’s confirmed he will give. I’ve also bashed off a note to the doctor who heads up the pump provision at my hospital to ask for his comments.

So, dear readers, the saga continues and I’ll keep you up to date with the thrills and spills of pump provision within the NHS as it happens. As always your comments and experiences are always very, very welcome here and on the forums.

Words, words, words

The thrill-seekers amongst us will be delighted to be informed that the provision of insulin pumps in Scotland was debated in the Scottish Parliament last week, in a motion introduced by David Stewart MSP (I never knew he got into politics after Eurythmics split up…)

The Parliament’s full report can be found here:

http://www.scottish.parliament.uk/business/officialReports/meetingsParliament/or-09/sor0903-02.htm#Col19328

For those who can’t be bothered to read it all, in summary it says:

• Pumps are good
• Scotland is at the bottom of the league table of western health care systems’ delivery of insulin pumps (Yay! Go us!)
• Scottish health boards don’t spend any money on pumps
• Ross Finnie MSP is Type One (Hurrah! We’re represented!)
• Although initially expensive, pumps work out cheaper in the end due to fewer complications
• It’s silly that NICE demands you have bad control before you’re eligible for a pump
• Did we say pumps are good?

For those that can’t even be bothered to read my summary, I’ve also illustrated this post at the top right with a word cloud made up of the content of the debate!

That pumps are being debated in Parliament is definitely a Good Thing and David Stewart should be congratulated for keeping diabetes and pumps on the agenda, as their provision in Scotland is shamefully low. However, whether we will see any great changes in the coming year or two remains to be seen. As always, I remain cynical but it’s nice to see diabetes isn’t being forgotten.

To coincide with their annual conference in Liverpool last week, the NHS Confederation published an interesting assessment of the potential economic trauma facing the NHS in coming years and how they might like to deal with it.

The report estimates that NHS finance is likely to reduce by around £8-10 billion in real terms in the three years from 2011. That means tough choices on what healthcare to provide to whom and how to do it most effectively.

The gut reaction in such times is to cut services across the board to hit the budget figures. The problem with this approach is it impacts healthcare immediately and damages the system for years to come.

The report warns against sacrificing long-term improvement for short term gain. As a diabetic, this is music to my ears. Diabetes is an easy target in tough times. If you neglect diabetes services for a couple of years your A&E admissions might increase a bit because we fall over hypo more often or are admitted with ketoacidosis more frequently, but overall costs don’t go up that much. The real problem hits 10 years down the line when the expensive complications of renal failure and blindness hit home following years of neglect. And of course as we’re talking economics we can conveniently ignore the quality of life implications of poor diabetes care!

Whilst I’ve previously declared my hand a fan of the concept of the NHS, I’m only too well aware that (like many large, public institutions) it is notoriously inefficient and lacking real drivers for change. As someone who recently went through a ridiculously complex 4 month process involving at least 10 NHS staff to get funding for a minor procedure that cost a few thousand less than the procedure they’d already agreed to fund, I speak from experience.

The report makes some very sensible recommendations. For example, the NHS has a massive asset base of valuable equipment and buildings that are mostly used Monday to Friday, 9-5. That’s 35 hours a week. My local Tesco supermarket opens 148 hours a week. That’s quite a difference. And when workers are crying out for appointments outside of working hours and many would probably be willing to even consider paying for such convenience, there’s surely an opportunity there?

My concern? I question the motivation and ability of current leaders to take on the tough task of driving through fundamental change.

The press over the coming months will no doubt be full of scare stories around how funding cuts mean the NHS is doomed. Let’s hope some balanced reporting also points people towards a nice little report that makes some very sensible suggestions about how Armageddon isn’t inevitable just yet if we take decisive action now.

When I was diagnosed with diabetes at the age of 4 in 1983 you put urine in a test tube and added some chemicals to make it change colour so you could get a rough idea of how much sugar was in your body. Blood testing strips were a huge step forward.

In 1989, at the age of 10 I moved from two injections a day with syringes onto this thing called a Novopen. It was a beautiful creation, like a top quality, brushed steel fountain pen but it contained insulin and had a needle on the end. It meant taking four injections a day, but it gave me flexibility – I had a full portion of fish and chips for the first time since my diagnosis. Previously, I wasn’t allowed so many carbs.

Over the years meters changed, I was delighted when the first five second meters came out – it used to take two minutes to get a blood test result, now it was almost instantaneous. My pen changed from the beautiful original to a bigger, cheaper, plastic model that I whinged constantly about but made no actual difference to my care.

The bad old days

We got faster acting insulin. The insulin analogues – like Humalog and Novorapid – came onto the scene and meant that you didn’t fly quite so high for quite so long if, like me, you didn’t think it was very practical to have to inject before you’d even got to the restaurant, never mind seen the menu.

The long acting insulins got better too. Lantus came along, lasting for roughly 24 hours rather than the not quite so handy 18-ish hours if  you were lucky that Ultratard gave me.

We’ve even seen developments in the way care is delivered. Now we have courses to help people understand diabetes and more importantly how to live with it rather than be controlled by it. The medical profession recognises the role of the expert patient, and although paternalism is still alive and well in many hospitals, there is an increasing recognition that the patient does sometimes know what they’re talking about. More work to do here I feel.

So, we’re chugging along, seeing incremental improvements, but I don’t think there’s been anything that’s really changed the course of how we live with diabetes. I’m talking about something that completely changes the way we deal with diabetes – the equivalent of the mobile phone, iPod or the PC out in the real world.

The Internet has made a big difference in terms of having access to huge volumes of information and other people living with the same condition, but it wasn’t a diabetic specific invention.

Continuous glucose monitoring systems

For me, the biggest leap forward was in 2007 when I started using a combined insulin pump and continuous glucose monitoring system. The insulin pump infuses insulin at a steady rate throughout the day and I press a button to deliver more insulin if I eat or need to correct a high blood sugar.

I never wanted a pump, I didn’t see the point in them and I certainly didn’t want to be attached to something. I’ve had it for twoyears and wish I’d got one years ago. It gives me the ability to make sm all adjustments to my insulin delivery whenever I want to.

On top of that, my marvellous little machine has a continuous glucose monitoring system (CGMS) built into it. I wear a small sensor -usually in my back – that I change every seven days. That sensor monitors the level of glucose in my interstitial fluid (the fluid just beneath your skin) and wirelessly transmits the results to my pump. I can’t tell you how excited my techie geek husband is to have a wirelessly enabled wife!

More next time on the wonders and irritants of using a CGMS.  In the meantime, I think I’m using the nearest thing we’ve had to a diabetic technology breakthrough that’s made it into the mainstream but what do you think? What have been the great leaps forward in diabetes care for you?