Shoot Up or Put Up

Clubbing - Belgian style

Last weekend I met up with two old school friends in the party capital of Europe, uhm, Brussels. While it may have a reputation for bureaucracy and dreary boringness, Brussels does actually have a great night-life, so soon after arriving we went out to hit the pubs and bars of the capital of the EU. Woo!

After sampling some (by “some”, I mean “quite a lot of”) cherry wine in a bar that used to be brothel, we headed off to Les Halles Saint-Gery and the famous club night “Stop Suffering and Start Dancing” which was being held in large, sweaty, crowded, smoky nightclub. As always when clubbing I had the issue of what to do with my insulin while I partied like it was 1999.

As I’ve mentioned before I carry all my diabetic kit around in one of a variety of funky man-bags. But the problem is you can’t check said bag into the cloakroom as you’ll inevitably need to test your blood glucose or inject at some point between arriving at midnight and leaving at 4am. So the only obvious solution was to head onto the dance floor, bag in tow.

So if you happened to be at Les Halles Saint-Gery last Saturday night and some git in the very centre of the dance floor, who danced like some sort of escaped lunatic (and was accompanied by a ginger monster and bearded freak*) kept bashing you with a brown leather Visconti bag then I can only apologise profusely. I’m sorry, I really am, but I had no other choice.

While dancing like a loon I was inevitably burning off calories (and producing my own bodyweight in sweat – yum!) leading to the obvious risk and tedium of sorting out a hypo. So I duly checked my BG (the strip light on the Freestyle Lite proved very useful for testing in a club that was seemingly only lit with flashing strobes). I was pleased to see that appeared to have created a perfect equilibrium between the energy I was using up and the carbs in the beer I was glugging down all night.

Who would have thought it? A bottle of Satan beer (yes, it is called that. If you can find it, try it as it’s very nice. Though at 8% it is rather strong…) every hour perfectly balances an hour of dancing like a maniac.

That beer can be put to this use is, I think, a very important discovery. So I will be applying to Diabetes UK for funding to conduct a great deal of further research. Naturally we will need plentiful supplies of beer and night clubs with good music. Any diabetic volunteers want to help out?

* It’s worth noting that Dave (said “ginger monster”) is the person who came up with the name of this blog and, indeed, the very tasteful sub-title. For this he deserves credit. It’s also worth nothing that Mat (said “bearded freak”) has contributed nothing.

A needling problem

Avid readers of your soaraway Shoot Up will know that I’m currently on an 18-month long NHS waiting list for a pump. You’ll also recall I’m not too chuffed about this for obvious reasons. As, on the whole, I’m generally a pain in the arse I’ve been writing polite letters to everyone concerned about this sorry state of affairs.

I’ve generally had sympathetic replies from my MSP, the chief pump honcho at the hospital and the Chief Executive of the health board wrote to me the other day to say he’s asked someone to investigate and report to him about pump provisioning. It does seem that people are generally supportive, which is nice to know but – of course – not actually of any practical help to diabetics.

Certainly in my area the main sticking point appears to be the lack of funding – not, as you might expect, for the pumps and supplies themselves but for the training required for new pump users. I do agree that pumps are slightly more complicated than administering MDI, as there seems to be a greater possibility of complete cock-up with a pump compared to MDI. Though, as we all know, it’s very easy to utterly mess up with MDI – I do it quite often!

My health board undoubtedly has some great DSNs and the training I received when I was first diagnosed was relatively brief but was of a very high standard. But, unfortunately, there just doesn’t seem to be enough of them to go around. Currently their policy is to train about 5 or 6 new pump users every two months. This just isn’t enough throughput to increase Scotland’s woefully low number of pump users up to levels that are on a par with the rest of the country, let alone the rest of the western world.

If training genuinely is a bottleneck (and not just a slightly cunning feint to avoid funding new pumps without breaking the rules) then there seems to me to be a possible solution in the form of a public-private initiative in which everyone could win.

So here it is – what about the NHS partnering with the pump manufactures to provide training? The pump manufacturers will, obviously, know exactly how their pumps work, how they’re best used and will have a wealth of experience in supporting their customers in using their products. Everyone knows that diabetes is a nice earner for our favourite pharmaceutical companies and so the cost of training could be recouped on a cost-recovery basis or even as loss-leader set against the ongoing purchase of pumps and supplies.

Pump manufactures would surely have a reasonable amount of available resource to chuck at training (especially if it benefited them through long term and ongoing sales) and such an arrangement would free up NHS staff to do what they do best – supporting diabetics.

But might this lead to reduced patient choice? If, for example, Small Manufacturer A wasn’t able to supply training while Large Manufacturer B did, then might there be an inherent bias in the NHS to encourage diabetics to get a pump from Large Manufacturer B as they could then save on training costs?

I don’t think so, as any such arrangement would necessarily reduce the training overhead for the NHS allowing them to concentrate their resources on supporting patients who wanted, for whatever reason, to use a pump from Small Manufacturer A.

In this scenario everyone wins – patients get training and pumps quickly; the NHS’s training costs are reduced; the pump manufacturers get a loyal and going supply of lucrative diabetics.

But what about the issue of the bifurcation of training? After all, training from a pump company might not be at the same standard as NHS training? (Of course, it might be better). But given that standards of training and pump provision vary wildly around the UK, I can’t see that this would make any significant difference from the current position.

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.

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.

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!