Shoot Up or Put Up

Haute cuisine - French style

You’ll all have noted from her earlier post that that Alison and her hubby are off sailing for a fortnight. Well, not one to be left out, I’m also on holiday for the next six days in the sunny south of France – staying with my folks who live an hour north of Toulouse.

Unlike Alison, I don’t have any queries about my diabetes as I have no intention of doing anything other than sitting the shade, reading The Oxford Book of Modern Science Writing and drinking cold white wine from the Loire valley.

So you lot are going to be cruelly abandoned for the next few days. Feel free to use the forum to continue the cheery banter amongst yourselves. Behave yourselves and enjoy!

The husband and I are off on our jollies for a couple of weeks, so I’ll leave you in the slightly scary but very entertaining care of Tim.

We’re going sailing in Greece which should be fabulous. Sailing is always an interesting diabetes challenge. I find I have to plan my insulin alongside the weather forecast. No wind? Increase insulin in preparation for a day of sunbathing and reading. A good breeze blowing? Reduce insulin and get ready to pull those ropes.

Other important questions preying on my mind include:

• What impact will Greek beer have on blood sugars? Last year Croatian beer proved to be marvellous in having very little impact, fingers crossed the Greek stuff is just as good.
• Will we get to the airport without me having a tantrum about how much diabetes junk I have to carry in my hand luggage? I’d say this is very unlikely.
• And the big one. In the next 2 weeks how many times will I catch my pump on a rope and say something rude when the pump swings round and hits me on the knee? Place your bets now ladies and gentleman, the answer will be published upon my return.

Bon voyage!

In the first of a series of one article, my wife Katie describes what it’s like to go through a diagnosis of diabetes – when you’re not actually the person diagnosed. Warning – contains details of our first date. -Tim

When Tim asked if I would like to write an article for Shoot Up I have to admit I didn’t know if I was entitled to join the diabetic force, not having diabetes myself. However, having brushed those doubts aside I got my quill and paper out and started writing.

I wanted to tell you about how the “other halves” deal with their loved ones having diabetes and how we cope with the ups and downs, highs and lows and the general fun that comes along with diabetes care.

I met Tim for the first time in 2005 over a pint in a dark dingy pub in the centre of Edinburgh during the mad International Festival.  We drank, talked for hours and saw an Iranian comedian, which I think you’d agree is a great first date! Tim wasn’t diagnosed with Diabetes until December 9th 2005, in fact he didn’t have as many grey hairs back then either…Don’t know if that makes me a health hazard.

After feeling tired and lethargic for a month or two and having to take a week off work sick he decided to make a doctor’s appointment.  Thinking it was probably the stresses and strains of modern life, he wasn’t expecting to be whisked off to the hospital that night and meet the Professor at the Edinburgh Royal Infirmary.  I remember that fateful day when I went to pick him up from the ERI after I got his messages.  He looked lost, frightened and alone.  Being told that he had something that would be there for the rest of his life is not something that you can take in straight away.

I didn’t know a great deal about diabetes, but I had the opportunity to visit the Diabetic Specialist Nurse with him and ask as many questions I wanted, which was a great help to both of us.  I wanted to make sure Tim was not going through this steep learning curve and often bewildering time alone.  I have tried to be there for Tim to listen, support, help, assist and learn with him.  I am also kind of proud that I can  guess how many units he should put in of Humalog before a meal or snack.

I know having an ailment or illness in any form can be isolating and frustrating, thinking you are the only one going through the problems, having someone there to rant and rave to is hugely helpful.

As I said, I am lucky my pancreas works but I am also very optimistic by the progress being made with the technology for diabetes..   I have seen that if you are able to keep a tight rein on your diabetic care, the future is very positive.

I wish I was learning to drive in this

Regular readers will remember that at the ripe old age of 32 I’m currently learning to drive. To have left it so late is sad, I know. Anyway, I thought I would give you a quick update as to how I’m doing – because I know you’re all just dying to know.

Well, it’s all going pretty swimmingly. My instructor, Rab, and I have been spending the evenings tootling around every side-street and main road in Edinburgh – going through seemingly every combination of roundabout, complicated junction and difficult narrow road that seems to exist in Edinburgh. Where the hell do all these difficult roads come from? I’ve never noticed them before.

I’ve now got everything sorted aside from clutch control (I’m learning in an manual drive car – non of this automatic gear malarkey for me!) so I’m pleased to report I’ve stalled at pretty much every one of the junctions mentioned above and have consequently held up Edinburgh’s traffic to a significant degree. I’m very proud of this.

Last Thursday I also passed my theory test. For those outside the UK, this is a written test which quizzes you on what roads signs mean, what you should do in an accident and how to avoid skids, etc., etc. The second part is a series of 14 videos taken from a driver’s point of view and you have to click when you see a developing hazard. All in all it’s quite good fun; but I was disappointed to get only 49/50 on the first section – I wanted to show off with a cool 50/50.

Anyway, back to the proper driving. The diabetes seems to be behaving itself well enough and hasn’t caused any problems. However, Rab told me the story of a diabetic ex-pupil of his – for the benefit of this post let’s call him Angus.

As part of his usual running commentary Rab asked Angus to turn left at a major junction. However, Angus didn’t move into the left lane or indeed look like he was going to turn, so Rab asked him again. No response. Rab shouted – again no response. He looked over to see his student’s eyes were completely glazed over, sweat pouring off him and he was clearly having a severe hypo and was completely out of it. While in control of one tonne of rapidly moving car.

Thank heavens for duel-controls – Rab was able to stop the car, shove some sugar down Angus’ throat and drive him home. The pupil’s wife opened the door and shouted “not again! You really need to get your sugars right before getting in a car!” Needless to say, Rab refused to take Angus out again.

Obviously Angus is one of the bad ‘uns that give all of us well-controlled diabetics a bad name. Hearing stories like this, however, makes you realise that perhaps the three-year limited licence which diabetics are subject to in UK (and about which both Alison and I bitched about in an earlier article) is perhaps not so bad after all.

If my inbox is anything to go by, how to secure NHS funding for insulin pumps and/or CGMS is a bit of a hot topic at the moment. There aren’t any magic answers, and personal experience taught me that tenacity and perseverance were pretty key to winning the battle, so for what its worth, here are my thoughts.

Understand the product – what is it that you want and why? How will you use this kit to improve your control or your quality of life? Be clear in your own mind about the benefits to you. Speak to the local rep – could you maybe trial the CGMS for a week to see if you like it and if it makes a difference to you? Take a look here for what I think are the main benefits to me.

Understand the market – what guidelines are out there? For pumps, INPUT have a great summary of the guidance.  For CGMS, there is very little guidance out there so you’ll probably need to fight on an individual basis. Medtronic have a summary of what little guidance exists.

Get your healthcare team on side – if your consultant is vehemently anti-pumps I’d recommend you find a new one. Try INPUT to find out who in your area has a good reputation for supporting pump use.

If your diabetes team just need a bit of gentle persuasion, show them the evidence. The download-able marketing literature from Medtronic covers the basics and quotes some of the major research projects that prove the benefits of CGMS. If you want more detail, try here for a reasonable summary of the research.

Use the suppliers - at the moment there’s only Metronic who provide CGMS in the UK. Contact them and ask to speak to your local rep. See if they know of any Drs in the area who are pro CGMS. When you know which clinic would suit you, head down to your GP and explain why you’d like to be referred for your diabetes care to that particular clinic.

The Dr says its too expensive – “Every time I have brought up continuous glucose monitoring with my diabetes nurse, she has said there is no way the NHS would cover it (no point even trying, apparently)”. To be blunt, it isn’t the job of your Dr or nurse to decide what the NHS will and won’t fund. Their job is to work with you to decide what is clinically the best treatment for you. Your local primary care organisation decides what they will and won’t fund, based on NHS guidelines or on an individual assessment of your case.

With your healthcare team on side, you now need to get financial approval. In the UK this will come from your local primary care organisation (PCO) - basically the NHS body who use our taxes to commission healthcare from hospitals and other providers on our behalf – in England and Scotland they’re called Primary Care Trusts (PCTs), Wales have Local Health Boards (LHBs) and Northern Ireland have Health and Social Services Boards (HSSBs). So we don’t lose the will to live amongst the complexities of the NHS, from now on I’ll call them PCOs.

If they agree that what you’re asking for is medically necessary, your Dr should write to your PCO to request that they fund the treatment. Ask for a copy of this letter, that way you know who its gone to and can chase it directly rather than via your Dr.

Personal experience showed that it took my PCO 6 weeks to respond to a letter. If I took that long at work to respond to a letter, I’d be sacked. I now give the PCO 2 weeks to respond, and then give the addressee of the letter a gentle nudge via phone or email. “I’m just calling re X to check you’ve got all the information you need” is a good opener – it brings it to their attention and means you get to know early on if they need more info.

Question, question, question. Without wanting to tar everyone with the same brush, we do seem to have a culture of prevarication in the NHS and a desire to do anything other than actually make a decision. Don’t be afraid to ask questions. Do they have everything they need to make a decision? If not, what else do they need? When can you expect a decision? Who will make the decision? What criteria will they use? What’s the appeals process?

Have your evidence – you want this, so make it as easy as possible for them to say yes.

Are there any NICE guidelines? If so, be clear about what they are and how you meet them. If there aren’t you need to point out this is not a general policy decision they’re making for everyone in the PCO area, this is something they should decide based on the merits of your case.

What are the consequences of not funding this request? eg severe hypos impacting on your ability to work, fear of night-time hypos as you live on your own. If you’re a woman, talking about the impact of poor diabetes control on any imminent planned pregnancy soon gets attention.

I felt I was being fobbed off and generally ignored when I applied for funding, so I went straight to the top and emailed the Chief Exec, cc my local MP. I explained the issue and that I felt I wasn’t getting a good quality service. The Government promises patient choice within the NHS, but I felt my PCO wasn’t making appropriate efforts to enable this.

There aren’t any simple answers to getting funding for CGMS, it is a battle but as more people fight that battle it will get easier. To summarise, here are a few things that I think are important:

• Be clear about what you want and how it will benefit you in the short and long term
• Get the support of your medical team – if they won’t support you, consider finding a new team
• Gather the evidence to show that what you’re asking for actually works - if you’re struggling, ask the suppliers to provide you with the evidence – this is their product, they should be able to point you to the research that shows that it works
• Keep the pressure on - you want this funding so you need to drive it through the system. Find out who is dealing in your PCO and speak to them regularly. Understand the process and always know what the next step is. 
• If you’re not getting anywhere, escalate. Writing to the Chief Exec and getting your local MP on board generally helps to clear any blockages. 

That’s what worked for me. If there’s anyone else out there with pearls of wisdom on how to get NHS funding, please share!

Horrible, nasty, plastic, vile, repulsive, tacky

Much like a Russian bride I once tried to buy via the Intermaweb, on paper the Menarini GlucoMen LX looks great. But also much like Irena (the aforementioned Russian bride) the reality is just not like the description.

Shortly after Irena arrived in the United Kingdom I noticed that unlike her cheerful smiling pictures I saw on the seedy web site on which I found her, she wasn’t in fact very smiley in person at all. Rather sullen in fact. With a penchant for hitting the vodka. Before breakfast.

Although I tried my best, sadly I had to end things with Irena after I took her to meet my parents. She spent the whole of Sunday lunch swearing, trying to kick the dog (referring to our elderly King Charles Spaniel as “that bloddy Siberian devil”) and – finally – puking a foul-smelling vodka and chicken mix into mum’s pot-porri. Last time I heard Irena had returned to Moscow, where she eventually married a local Mafia boss and was happily settling into the life of a gangster’s moll. Good luck to her!

And it was much the same with the GlucoMen LX (no, really). On paper it does look good. A small sample size, test strips which didn’t need to be calibrated and a fairly good 400 test memory. However, it just looks and feels utterly horrible. Encased in semi-see-through plastic (much like Irena when she was feeling “cекси”, as she put it) the GlucoMen looks tacky and just feels like it will fall apart the minute you breathe on it a little too heavily.

Such poor looks would be forgiveable if the meter had a range of mind-bogglingly useful features. But, perhaps needless to say, it doesn’t. It has the usual range of average results analysis and so on but while the layout and navigation is pretty straightforward it just doesn’t feel particularly intuitive or particularly nice to use.

When there are a multitude of sexier meters out there (in fact, every other glucose meter, ever) there is absolutely no reason to saddle yourself with this vile piece of design. However, if forced upon you by a particularly cruel diabetic clinic or evil insurance company it’ll just about do.

So, top tip for the day – never expect things to be as good as described on the web. Especially if you’re checking out Russian brides.

Sample size – 4/5
0.3μL per sample – pretty good

Test time – 3/5
4 seconds – quick, but not the quickest

Test strip calibration – 5/5
No need to calibrate. Yay!

Test strip slurpiness – 3/5
Averagely fine.

Memory – 3/5
400 records – not bad, not bad.

Sexiness – -5/5
Scores minus points for its utter hideousness

Beeping – 5/5
Can be turned off.

4am test – 2/5
Not great, but not entirely a disaster either.

Grand total – 20/40

Check out our other blood glucose meter reviews or go to the manufacturer’s site

A generic picture, generically illustrating the results of a generic poll

Well chaps, it’s that time again – the much awaited results of our latest poll. This month we asked what the diabetic hoards thought were the best ways of managing Type One diabetes.

Perhaps unsurprisingly, given the number of clearly biased pumpers who read the site, the option “21st century – pump therapy” came out as top result by quite a long way. This was closely followed by “22nd century – stem cell splicing”. This obviously demonstrates that we diabetics are a progressive bunch who believe in a wonderful future where diabetes is a thing of the past, where we drive hover-cars and dress in figure-hugging silver space suits.

Personally, my view of the future is a horrifyingly dystopian and nightmarish prospect similar to that vividly portrayed by Orwell and Huxley. But then maybe I’m just having a bad day.

Moving down the rankings, next came “18th century – blood letting & leeches”, followed by “17th century – trepanning”.

I know desperate times call for desperate measures, but the application of leeches and drilling into your head to let out evil spirits comes before “20th century – multiple daily injections” in your rankings? Are you lot insane?!

I know I’m not the greatest fan of injecting myself five times a day – but that gruesomely puncturing your own skull with a mechanical borer comes before MDI in your treatment preferences is completely and utterly fruitcake. Honestly, I really think Alison and I need to really worry about Shoot Up’s demographic.

Quickly leaving these horrifying results behind us, there’s a new poll up now for your voting delight, so get clicking!

Those results in full:

1 = 21st century – pump therapy
2 = 22nd century – stem cell splicing
3 = 18th century – blood letting & leeches
4 = 17th century – trepanning
5 = 19th century – starvation & prayer
6 = 20th century – multiple daily injections

I’ve been seeing a Dr lately for something other than diabetes. That’s quite a strange experience because at some point they always ask the question “How is your diabetes?” How am I meant to answer that?

• Truthfully - “It’s a damn irritation to be honest but it’s fine”
• What they want to hear? – “I have it all under control, my HbA1c is perfect and my diabetes will in no way impact on your work”
• Baffle them with science – “The CGMS has identified a problem with dawn phenomenon and I think I need to tweak my basals to counter-act some underlying  insulin resistance. Engage warp drive.”
• Flippantly - “Why don’t you ask it? Hey, diabetes, how are you?”
• Emotionally -”I thought you’d never ask, I can’t cope any longer, I’ve had this 26 years and it’s driving me mad <burst into tears for extra impact>”
• Try to confuse them – “Oh, I’ve given my diabetes some time off, I thought it was feeling a little stressed so I said I’d cope on my own for a couple of weeks while it took a break”
• Scare them - “Diabetes? Oh I don’t bother about that, the interweb said it could be cured with coffee so I’m drinking 20 cups a day.”

So, how is your diabetes?

A scantily clad lady in a lurid magazine, yesterday

We quite often talk about the downsides of diabetes – the problems with hypos, sight issues and legs rotting off with gangrene. But a recent headline in Scotland’s daily rag The Herald gave me renewed hope – “Diabetes sufferer sacked from school wins back job“.

As an aside, the Scottish press is world-renowned for its quality reporting. The famous Aberdeen-based Press & Journal is celebrated for its huge bias towards local issues at the expense of world events. It’s perhaps apocryphal, but the day the Titanic sank in 1912 the Press & Journal apparently reported the disaster with the headline “Aberdeenshire Man Drowned At Sea”. Even more recently, only one week after the 9/11 attacks the paper’s World News section totalled just a single half page.

Anyway, I digress. In essence the story here is that a teacher in an Edinburgh school was fired for bashing-the-bishop (add your favourite masturbatory euphemism in the comments section below!) over some soft core porn on the web – apparently the Maxim magazine web site of all places.

Nevertheless, the teacher in question denied the allegations and took his former employers to an industrial tribunal. Attesting on his behalf, his doctor said his behaviour “could have been caused by hypoglycaemia…symptoms [of which] include memory loss, atypical and automatic behaviour.” Apparently he had been taking the “wrong strength of insulin at the time” and this, he alleged, could have contributed to the likelihood of him being hypoglycaemic.

This excuse was accepted and the teacher got his job back and was awarded some compensation for his troubles.

His explanation is obviously complete and utter nonsense – I think the last thing you would do when suffering from a hypo would be to log on to a lurid website and burp the worm. But it does give me hope that there is an upside to diabetes – we have a fantastic excuse for pretty much everything!

“Why have you stolen all those pens from the stationary cupboard, Brown?” “Sorry sir, I was having a hypo”.

“You’re driving a stolen car again, Brown!” “Sorry officer, I was having a hypo”.

“Brown! Why did you organise that military coup in that central-African country and resume the trade of conflict diamonds?” “Sorry Prime Minister, I was having a hypo”.

So it seems there’s just no situation where you can’t play the diabetes card. Fantastic! Excuse me while I go and rob my local bank!

The Daily Herald

A typical music festival with young people in the background

While Alison and I are completely ancient (Alison especially), I know that some of you young folk regularly read the soaraway Shoot Up.

It’s therefore worth noting that Edinburgh’s Napier University have recently created a leaflet giving advice to you outlandish young people who have diabetes about attending this summer’s music festivals, where I understand you flock to see certain popular music beat combos.

As I listen to nothing but Gregorian plainsong on my gramophone, things relating to chorus girls and singing groups have absolutely no relevance to me. But, as the leaflet isn’t yet available online, I asked Napier’s communications department for a copy which I’m hosting here for your fun and enjoyment.

Enjoy it you krazy kidz!

Download the leaflet here.