Shoot Up or Put Up

I’ve always been a fan of the concept of electronic patient records. All the data available in one place to me and to any of my healthcare team. We can all work from the same info, it doesn’t get lost in the post and there isn’t a massive upheaval if you happen to move house.

At times I feel like this is the minority view. I spend a lot of time listening to propaganda in the media and from many clinicians about how insecure it is to have my medical records online, how anyone could hack into the system and read about my in growing toenail. Now, I accept there are limitations with any method of storing data, but the backlash against electronic patient records assumes that the current system is secure.

A recent incident got me thinking. I don’t believe my paper health records are particularly secure. I’ve got three examples where I know they weren’t:

• Whenever I went to clinic as a child my dad’s cousin who worked at the hospital invariably knew my blood test results before we did. She didn’t even work in the diabetes clinic and had no reason to be accessing my records but could see them nonetheless.
• When we moved house a couple of years ago my notes went missing for 6 months. They reappeared after a pensioner discovered them tucked into the back of her notes. No doubt she had a good read before returning them, I know I would have!
• And the straw that broke the camel’s back – my PCT have just accidentally sent detailed information about my medical condition to a random MP. Not my MP who I had copied in on correspondence because I needed to get things moving, a completely different MP who they accidentally wrote to.

All my bank information is stored online and to my knowledge it has never been sent to my MP by accident, interrogated by family who happen to work at the bank or lost to a random old lady for 6 months.

As a student I worked in a bank. If they wanted to the bank could check which accounts I’d accessed on the computer system. If I’d been into accounts I shouldn’t have for no good reason eg nosying at how much my neighbours earn etc they could spot it and take action.

There is no failsafe method of storing data, but I believe the benefits of having my health info available to me at any time via the internet really outweigh the perceived security risks. How do I convince the cynics of that too?

Monday was a beautiful sunny bank holiday in north west England. We spent most of it gardening. It was a perfect day for washing so I stripped the bed and the washing line was soon full of nice clean bedding drying in the breeze.

On Monday night we climbed into nice, clean, crisp bedding. It was lovely. The only thing that would have made it nicer was if it’d been ironed but sadly I believe life is too short to iron sheets so our bedding is never quite as crisp as my mother’s who has much higher standards than I do and irons her sheets.

And so it was, clean, fresh as a daisy, crisp (yet unironed) bedding. Until Tuesday morning when we woke up to what can only be described as the aftermath of some sort of massacre. Splatters of blood all over the duvet, sheets and pillowcases.

A quick check revealed that thankfully we hadn’t been gunned down in the middle of the night by invaders from another planet. No, the explanation was far simpler. It appears the flow of blood from my pre-bed blood test hadn’t been stopped with the usual quick lick and unbeknown to me had continued to bleed well into the night.

Those with a working pancreas might never have had the opportunity to track where their left hand middle finger travels during the average night. Let me enlighten you. Mine seems to have spent some time bleeding under the pillow before migrating to the top of the duvet, then spreading blood around the middle of the sheet before what looks like a very grand finale on top of the pillow.

The still quite fresh but now blood stained to the point of looking like it was used in major surgery bedding is now out of the very hot wash and drying in the office because typically, when I really need to wash the bedding, it’s pouring down with rain.

Since I was diagnosed with diabetes (yay!) a few years ago, I’ve travelled quite a bit on planes. As you’ll all know, insulin hates getting too cold or too hot and therefore keeping our spare supplies in the hold is really out of the question.

Although a normal passenger plane’s hold will be heated to around about five degrees centigrade and is, of course, pressurised – you just don’t know how long your suitcase might stay out on the runway in baking tropical heat / freezing frigid cold (delete as applicable) or how well the throwers (or “baggage handlers” as they’re quaintly known) will treat your case. Katie and I always play a game as we wait for our suitcases to arrive on the carousel called “Which Bit of Suitcase Will Have Been Ripped Off This Time?” A wildly fun game if ever there was.

The long and short of all this is the diabetic has to carry through lots of little vials of clear, sinister-looking liquids through security in their hand luggage. Post 9/11 security has been seriously beefed up on all airlines and airports and so this could be a pain in the butt for us pancreatically-challenged victims.

As an aside, while I’m on the topic of security, I grew up in Belfast in the 1980’s during the tail-end of The Troubles and frequently flew back to England with my brother. I remember the approach up to Belfast’s Aldergrove airport was interrupted by a military checkpoint through which your car’s number plate was typed into the police computer and if you didn’t check out you were whisked aside to be blown up in a controlled explosion, or something.

Once past this you were frisked at the next security point and your bag searched regardless of whether the metal detector bleeped – and all this even before you got into the airport building itself. Security thereafter was, well, pretty damned secure. A nice man from the security services would question each passenger in the departures lounge (I was a school boy at the time, so answered questions like “what do you plan to do during your visit to Northern Ireland?” with a puzzled “uhm, go to school…?”). Finally you would arrive at London Heathrow at an arrivals gate especially reserved for entries from Northern Ireland which was situated miles away from any other gates – presumably to give MI5 a final chance to give you the once over.

So compared to all this I think the security nowadays is pretty straightforward, though I have to confess I prefer it now you don’t have a solder pointing his SA80 semi-automatic carbine at you while I go through security – but, hey, that’s just me.

Anyway, prior to travelling – like any good diabetic – I got a signed letter from my registrar explaining I was pancreatically-challenged, a copy of my latest prescription and prepared myself for questioning and possible full cavity body-searches.

However, I’ve never had the slightest problem with security and have never even had my bag manually searched – this applies to airlines or any of the tourist sights in the USA which had a degree of security. Meanwhile my wife, Katie, frequently gets stopped, frisked and searched as I’m ignored.

I suspect that under the prying x-ray machine my kit just looks like standard diabetic stuff and so it just gets waved through. Maybe I just have an honest face. In any event, that the guards are distracted by my insulin certainly makes it much easier to get my concealed handgun through security. Hurrah!

The more avid and fanatical readers of this lovely blog will have noticed I’ve been away for the last few weeks. I was holidaying with my wife Katie in the marvellous United States of America, which as the more observant will have noted is on a different continent to the one I live in.

Sadly perhaps, modern science tells us that the world is not a flat plane supported by giant mystical elephants but is instead a boring old oblate spheroid. Bah – modern science may have given us insulin but I’d really rather think of the earth as being propped up by the whole giant elephant thing – seriously, how cool would that be? Though I wouldn’t want to be chap that had to deal with their, uhm, droppings.

Anyway, because of this whole oblate spheroid malarkey (what the hell is a oblate spheroid I wonder?) we have yet another thing to torment the honest diabetic – the time zone.

Designed to ensure half the world doesn’t remain in perpetual darkness while the other basks in sunlight during office hours, the time zone can be a real pain in the arse to the travelling diabetic if you use long-acting insulins like lantus.

I tend to put in my lantus at about 7.30pm evening – usually just before I get stuck into the trough of my evening meal and I rarely, if ever, miss it by more than an hour. Like most diabetics who have been lumbered with the pissing evile for more than a year or so, I hardly ever think about it as my internal diabetic-guardian alerts me it’s lantus time; just like my internal plaque-sentinel reminds me to clean my tusks each evening and morning.

Before I went to the USA I asked my diabetic registrar what I should do with the lantus. She sensibly and logically suggested I just keep shoving it in at UK time each day. So in New York I would bung it in at 2.30 (otherwise known as Chinese dentist time (tooth-hurty – geddit! Ha ha ha ha! Sigh…)) and in St Louis at 1.30.

Simple in theory, but surprisingly difficult in practise. It seems my diabetic-guardian remained permanently jet-lagged throughout and refused to remind me that it was lantus time and I therefore was late with quite a few injections, with my wife suddenly remembering three hours later – “shit! Have you done your lantus?” (my wife never swears of course – this is dramatic licence carefully added to this post to increase the thrill factor).

In actual fact, I didn’t really notice any wildly awful effects of such differing injection times, so maybe it didn’t matter all that much after all. But if anyone has any handy time-zone tips let us all know in the box below. And, yes, I know you pump people don’t have these problems.

Oh, finally, you’ll all be thrilled to hear that my internal plaque-sentinel kept my right with the whole oral-hygiene thing throughout.

I love the Internet. I love the fact that it can be used as an interactive broadcast medium that can bring people and communities closer together. I love the way it disseminates information, reducing fear and ignorance – shining the bright light of knowledge into every corner of the earth.

I also love it because it allows me to bore the hell out of hundreds of people by showing them my holiday photos. Yay!

Yes, joyous readers, I’m back from our sojourn to the United States with a whole metric tonne of new articles ready for your reading enjoyment – don’t ever say I’m not good to you.

So once my work backlog of fifteen million emails has been cleared I’ll start posting them up along with Alison’s article goodness. It’s gonna be a summer of diabetes-blogging-bonanza! Rrrrraaaagh!

In the meantime you can content yourself with the lovely new poll system over on the right hand side there. Through the medium of graphs Alison and I will be keeping our collective fingers on the pulse of the diabetes universe through insightful and penetrating questions. Well, either that or we’ll use it for distributing more pointless whimsy.

I spent an age yesterday searching for a proper blueberry muffin. I could find a low fat, low sugar version, or one made with bran (I know it’s healthy but it’s not meant to take me 10 minutes to chew through a muffin, hence I like mine without the bran) but not a genuine, full fat, full sugar, tasty, scrumptious, delicious, naughty but nice blueberry muffin.

Back in 1983 when I was diagnosed (or the dark ages as Tim likes to call it) you struggled to get sugar free anything in the UK. Diet drinks were as rare as a very rare thing. More often than not water was the only sugar free option in a cafe or restaurant (or now I think about it, were my parents just telling me that to keep the costs down???).

We went on holiday as a family to Florida in 1989 when I was 10. We must have spent half a day in the supermarket. It was amazing, they had sugar free everything. Sugar free chocolate soda, root beer (how do you drink that, its vile), cream soda, muffins, toffees, mints, strawberry flavoured chewing gum (we must have brought back a hundred packs of this stuff). I was literally a diabetic kid in a sugar free sweet shop.

I wanted to try all of it. Sadly all the canned drinks were in packs of 6 which was a bit big when you only wanted to try one, but the shop assistant said we could split the packs. That was a revelation, in the UK they start removing your limbs if you try and split a six pack in a supermarket. It just isn’t done.

Actually, most of the sugar free drinks were a grave disappointment. It was the last time I ever drank chocolate soda, root beer or cream soda, but it was so good to try them and know that I wasn’t really missing out!

Ironically now that the world is full of sugar free stuff I no longer have such a need for it. The wonders of carb counting and insulin adjusting mean that if I want chocolate I have a bit of proper chocolate rather than the crime against taste and the digestive system that is sugar free chocolate.  It actually feels like things are going a bit too far in favour of the healthy life. If I want a healthy snack I have an apple. If I want a naughty snack, I have a proper blueberry muffin. The hybrid low sugar, low fat versions seem to miss the mark on both counts – they’re still full of carbs so diabetes wise I still need to think about it, and they doesn’t taste as good as the orignial. On that thought, I’ll get back to my muffin.

I’ve been told this numerous times and it always makes me smile. But last week I realised that we diabetics are very hard to spot.

The Jonas brothers (teen band sensation apparently) are in the UK at the moment promoting something or other. Not being a teenage girl, this would have completely missed my radar, except of course one of them is diabetic so that forces me to take an interest.

The evening news featured all the big stories of the day – swine flu, global economic meltdown, MP expenses palaver and the fact that the Jonas brothers are here. I commented to the husband that one of them was diabetic.

He gave me a look that said “diabetic or not, we’re not going to see them” then tried to appear interested.

That’s where my knowledge ran out. I suddenly realised I had no idea which one has diabetes. I think its Nick, but I wouldn’t know which one that is without an adolescent diabetic girl to help me.

So, today’s question for the day, should famous people with diabetes have a subtle sign on them so that people with diabetes who aren’t their core audience can spot them? I’m thinking something along the lines of a Harry Potter scar that glows but is only visible to diabetics. That way I wouldn’t have to resort to Google to work out which Jonas brother has diabetes!

Inspired by the marvel that was Saturday night’s Eurovision Song Contest, I was feeling a bit global so had a look at where visitors to the blog have been coming from over the last month. I knew we had a lot of Brits and Americans gracing our pages, but you’re coming from all over the world. Tim and I have rudely been writing purely in English so I feel now is a time to greet all our readers:

Good day chaps to the British (we came 5th in Eurovision, how amazing is that??)

• Hi y’all to the Americans
• Hello/Bonjour to the Canadians
• G’day to the Ozzies
• Hello to the New Zealanders (I feel I should know some colloquial greeting for our friends in NZ but my brain is sadly lacking)
• Bonjour to the Belgians, the French, the Swiss and the Luxembourgers (I had to google what you call someone from Luxembourg and to be honest there’s no clear cut answer so we’ll stick with this one until someone tells me otherwise)
• Hola to the Spanish, Mexicans, Brazillians and Venezuelans
• Guten Tag to the Germans
• Goedendag to the Dutch
• Buongiorno to the Italians
• Dobar dan to the Croatians (believe it or not I knew that one, but from here on in I’m reliant on dodgy internet translation sites so forgive me if I accidentally publish any obscenities)
• Goddag to the Danes
• Magandang araw to the Filipinos
• Selamat sore to the Indonesians
• Hallo to the South Africans
• God dag to the Norwegians and congratulations on winning Eurovision
• Xin chao buôi ngay to the Vietnamese
• And finally Dobrý den to the Slovakians

Its amazing to know you’re reading this all around the world and it’ll do Tim’s ego no end of good. If I’ve missed you off, humble apologies, leave us a comment to let us know.

We Brits like to whinge about the NHS. It’s apparently inefficient with long waiting times and poor service. Yet despite its faults, I’m a fan. Why? Good or bad?

I’ve always been generally supportive of the concept of the NHS, but this support has grown over the last few years, partly driven by greater exposure to private healthcare systems through the internet. What really made me sit up and think was the realisation that in the current climate, I might be worried about my job security, but the issue of losing private healthcare coverage if I were to lose my job doesn’t feature on my agenda. Equally, I’ve never contemplated how I’m going to be able to afford my next bottle of insulin and I’ve never made healthcare choices based on what’s on special offer in the pharmacy.

In the UK we have the National Health Service. Free at the point of use, which is why I’ve never had the worries above. However, it is not, contrary to popular myth, free. In 2007 the NHS annual budget was £104 billion, which works out at a cost in tax of around £1,800 per person in the UK.

Many things infuriate me about the NHS. The fact that it takes over a week to type a letter and that healthcare for chronic conditions like diabetes is generally delivered 9-5, Mon-Fri (we still don’t seem to have worked out that patients have jobs too).

Another issue with a state run system is that it’s hard to find a clear motivator for overall improvement. Private providers drive for efficiency so that they can increase profits. The NHS doesn’t have profit, indeed if it doesn’t spend its allocated budget in a particular year it tends to be clawed back, meaning a huge drive to spend as the end of the financial year approaches. Good use of tax payers’ money? I think not.

So it has it’s faults (believe me, I could go on!), but as someone with a chronic condition I believe the concept of the NHS is a solid starting point from which we can improve.

I have the luxury of knowing that while I live in the UK, being able to afford basic life support like insulin will never be an issue for me. Most of the issues I have with the NHS I can fight to change. My own personal behaviour influences how people react to me, so I can manage their expectations . When I don’t feel I’m getting good care eg I want a pump and CGMS and can’t get one, I appeal. I work the system. I gather my facts and drive the organisation to consider my case, bringing in whoever I need to support my case, be that the Chief Exec, my MP or the press.

I admire the way a lot of American patients manage their healthcare providers like they’d manage any other supplier. In the UK, we don’t generally do this. There’s a perception that patients should be grateful for what care they get because it’s free (it’s not, its £1,800 a year, you’re paying for it!). Therefore many people don’t feel it’s appropriate to question or challenge the system. As customers, we’re not particularly demanding of the NHS.

I believe a change in the way patients act would help to improve the NHS. I treat my healthcare team like any other supplier I interact with – my bank, solicitor, electric company, car dealership etc. I try to build a good relationship whilst making my expectations clear. I provide constructive feedback – positive and negative so that they can improve. I’m conscious of my obligations – I turn up punctually to appointments armed with the relevant data. I act like an equal partner in the relationship but I have to admit, it takes a strong person to do it and it can be quite a battle to overcome a sometimes overpoweringly paternalistic approach!

But when it comes down to it, as someone with a chronic disease, I chose the cosy state owned option complete with all its faults. Why? Because I was gobsmacked when I read about people in one of the world’s richest countries, the good old US of A not knowing where their next bottle of insulin was coming from and having to balance the cost of diabetes medication against other essentials like food.

That, for me, is too great a price to pay. The NHS has many flaws but does react to pressure if push comes to shove and while we work to improve it, people are still receiving good basic healthcare. The NHS gets my vote.

Living the dream recruitment agency. Now hiring

We are a recruitment agency specialising in hard to fill roles. Our client, Alison, has decided that with a busy job, voluntary work, personal life and the blogging thing, something has to give. Therefore she intends to outsource her day to day diabetes management.

Our client will maintain control of all strategic diabetes decisions including the interesting bits like choosing to get a pump etc. However, the successful applicant will be tasked with looking after the day to day stuff that takes up so much time and energy.

Amongst other things the successful applicant will be expected to:

- Attend all check ups that don’t generally require strategic decisions eg eyes, feet, blood tests. We acknowledge that this may involve some teething difficulties around how to remove our client’s eyeballs and feet so they can be transported to the appointment without her, but a can do attitude is essential for this job and we’re sure the right applicant will find a way of addressing this issue. Our client will be available on the phone if input is required during the consultation.

- Provide basic diabetes training to all clinicians who come in contact with our client. Basic phrases along the lines of “No she doesn’t take tablets for it” and “just because she has a pump doesn’t mean she “has it really bad”" should suffice.

- Talk through our client’s history with relevant clinicians before she enters the appointment. Our client feels that if she has to tell someone her medical history one more time when they have it written down for them she might scream.

- Change infusion sets and sensors without our client having to think about it 5 times before she actually gets round to doing it.

- Collect that prescription that has been awaiting collection from Tesco for 2 days now.

- When a new diabetes prescription arrives, file all drugs and associated junk neatly in the cupboard rather than leaving the infusion sets in the huge box they were delivered in cluttering up the bedroom.

- If our client decides to eat a proper Indian curry which inevitably causes highs that require insulin around 3am, the right applicant will be there to press the pump buttons, rather than the client having to wake up and do it herself, thus resulting in her being tired in the morning.

- Sort out and transport all the diabetes junk  required when travelling so that our client can travel light, like a person with a working pancreas.

- Hover constantly but invisibly nearby with food in case of lows, to save our client having to carry a handbag the size of a planet.

- Remove fruit pastilles from all of our client’s clothes before washing

- Take full responsibiltity  for diabetes management on the odd occassion when our client feels she could really do with a day off from it.

Hours: 24/7, no holidays.

Pay: If you could do all of that, the pay budget would be unlimited!