Shoot Up or Put Up

Just out of reach

By Samantha

Today, I go into battle. Excuse me while I suit up…and the somewhat serious nature of this post…

Since deciding that an Insulin Pump would be the best option for me, I seem to have had nothing but trouble from various people in the diabetes specialist world. As some you may know from reading my own blog, I have recently come out of a few years of huge diabetes rebellion which has culminated in the onset of peripheral nueropathy. Not very nice I can tell you. And since getting my backside into gear, my blood sugar levels have been all over the place. We’re talking constant hypos (three or four a day usually), which I don’t often feel, as well as huge highs. And all of this is despite carb counting.

I have been arguing with specialists for months now about getting a pump. And my fantastic nursing team have been brilliant about it, pushing my notes forward to various professors and big cheeses.

Then the phone call this morning came. It was my nurse, and she told me that the big cheese had said under no circumstance would I be eligable for a pump. He reckons my latest HbA1C is too good, and I’m too well controlled. Funny that…despite phoning up my nurses in a panic because of various factors and them knowing the factors that have contributed to my wanting a pump. Funny, that despite having massive blood sugar issues, and massive problems with the restrictions of MDI’s, that they still feel it necessary to refuse this flat out.

HbA1C is not the be all and end all of starting on insulin pump therapy surely? Surely there are other factors involved such as the way the diabetes affects the person in question’s lifestyle? Such as, oh I don’t know? Deblitating hypos? It just seems funny that a supposedly brilliant team has immediately jumped on the HbA1C thing, rather than considering all the options.

A total kick in the teeth. And one I’m not going to give up easily I can tell you. Someone fetch me a giant stick so I can keep hitting my specialist with it til he relents!

My fight starts now. It’s going to be a long and hard battle, and many lives may be lost along the way. But I’m certainly not going to give up on this one. The emails to various people in the know have been started, and a full on daily diary of blood sugar issues and whatnot has been started too. My weapon of choice? One fully loaded novopen 4…kapow! Take that specialist team!

But my question for you guys is thus: have any of you had to put up with such things getting hold of a pump? And also, do you have any advice?

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Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

I pushed the button and nothing happened. I pushed it again and it worked. At least when my pancreas broke it went completely kaput. After almost 3 years of uninterrupted service my battery powered pancreas was having a bit of a wobble, but was it serious enough to call for help?

I’m not really the type of person who calls a helpline at the drop of a hat. If something breaks at home I try and fix it. If my laptop is playing up at work, I’ll consult family, friends, strangers, the neighbour’s dog. If all that fails I will reluctantly go through the process of making a cup of tea and mentally preparing myself for the trauma of calling the IT helpdesk. I’m happiest when I’m self sufficient.

The other day I pressed a button on my pump and it didn’t respond. I pressed it again and it worked. That happened a couple of times throughout the day and I started to wonder whether I should do something about it. It’s hard. If my pancreas worked and one day I felt a slight twinge in it I wouldn’t go running to the Dr’s. I’d wait a couple of days, see if it got any worse or whether it’d get better by itself. With my battery powered pancreas though I’m a bit twitchier.

I felt like a neurotic over-protective obsessive when I called the helpdesk and heard myself explain that one button on my pump sometimes didn’t work first time but generally worked second time. The lady on the other end obviously deals with such people a lot as she didn’t laugh at me, said it sounded like the start of a button failure and I’d have a new pump on my doorstep the next day. Good job Medtronic, great service.

I wasn’t being neurotic, just pro-active. So now I’m wondering if I’ve been too lax over the years. Perhaps I’ve not been diligent enough with my electronic devices and I need to up my game. The vacuum cleaner made a strange noise last week when I turned it on; I should probably call the help desk about that and let them know. The fridge door squeaks too; I might give the manufacturer a call. And when I turn the TV on it occasionally flickers; I should report that to someone. I could become a professional pesterer.

I must stop there. I’ve no time to blog any more; I’ve got help desks to call.

I’m lucky in that I get to talk to quite a few pancreatically challenged people, both in the real world and online. I like to hear their views. There are a few things I seem to disagree with a few people on though and I’m sorry, but they’re things I’m not willing to apologise for.

• I can’t get excited about a cure. Many people believe I should have my insulin withheld for a week to torture me for this abhorrent view. I’ve had diabetes since I was 4. If I’d have spent all that time wishing and waiting for a cure I’d have had a pretty dull life. It’s a great marketing ploy – it’s so much easier to raise funds for research into a cure rather than research into a project to examine the best ways of helping teenagers live with their diabetes. But ultimately, it’s not something I waste much time thinking about.

• I will not feel guilty about costing the NHS money. I pay my taxes, I did nothing to bring this on myself. I don’t look at people with asthma, eplilespy, multiple sclerosis or cystic fibrosis and think “they’re not worth the money it costs to keep them alive” so why should I think it about myself.

• I will not apologise for having an“expensive” pump and CGMS. The amount of times I get told – by a mixture of healthcare professionals and the pancreatically challenged  “pumps are very expensive”, “they’re not suitable for everyone”, “you’re very lucky to have one” is to be frank, a little tiring. Let me take those one by one.

• “Pumps are very expensive” – compared to what? Compared to a packet of biscuits they cost a fortune. In comparison to kidney dialysis they’re an absolute bargain. Compared to the cost of providing a blind amputee with the support they need to live, they’re a drop in the ocean.

• “They’re not suitable for everyone” – I agree. At which point did I suggest that the world and his wife needed a pump? I did the research and decided it was the right route for me, that’s not the same as forcing the entire country onto insulin pumps. Research by John Pickup* says about 20-25% of people on insulin would benefit from a pump, so no one is suggesting they’re for everyone. I am keen though that everyone who’s done the research, assessed the options and decided that a pump would be good for them is given the chance to use one.

• “You’re very lucky to have one” – yes, I am. And if I’d made no effort to educate myself about how to use it, or I’d got it and left it on a shelf gathering dust I should whip myself daily with a paralysed porcupine as a punishment for wasting valuable resources. As it is, I’m using it to give me good diabetes control and great quality of life. What more do you want?

So, there’s my list of things I’m really not willing to apologise for. Sorry

* Pickup JC. Are insulin pumps underutilised in type 1 diabetes? Yes. Diabetes Care 2006; 29: 1449-52

I have a few friends starting on pumps soon so having previously discussed getting funding for a pump, choosing a pump and answering the top questions people ask about pumps, I thought a few top tips on starting pumping might be helpful.

Firstly, don’t underestimate it; starting a pump is a big change.

Research, research, research. My bible was Pumping Insulin by John Walsh. It’s quite technical but it tells you everything you could need to know about using an insulin pump. I read it before I started pumping, used it to work out what my insulin dosages should be and then re-read it once I’d started on the pump. I’d have been lost without it.

Some of the pump companies do good online training which you can do before you start on the pump. Whatever you do, make sure you do some reading before you start, that way you’ll hit the ground running and it won’t all be quite so alien to you.

Think about taking someone with you to your pump training. I took the husband and it made it so much easier. There is a lot to remember, and it makes such a difference to have someone else who’s been through the training when you’ve forgotten how to change an infusion set!

Don’t panic! You didn’t learn all about diabetes on the day you were diagnosed and the same goes for getting your pump. Understand the basics first, then have a play with the more advanced settings.

Test, test, test – it’s the only way you’re going to work out your insulin rates. If you can get your hands on a CGMS, if only for a few days, I think they make a real difference in helping you to work out what’s working and what isn’t.

Don’t be disheartened. It took me about 3 months to get to the point where I was as comfortable with my pump as I was beforehand. I loved it from day 1, it just took time to work it all out.

Don’t be surprised if you wake up in a cold sweat because you think you’ve forgotten to take your Lantus, then realise that you don’t need it any more. That took a while for me to get used to.

Always carry a spare syringe with you. The proper advice is that you should always carry a spare infusion set in case you rip it out, it blocks etc. Because I’m a bad diabetic who hates carrying junk, I don’t do this if I’m just out for the day. If you’re stubbornly stupid like me, at least carry a syringe with you – that way you’re not completely scuppered when you have one of those days.

Fellow pumpers, do you have any other top tips for those about to enter the world of pumps for the first time?

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.

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.

I went to London for work yesterday. Not a major event really, I go a few times a month and it’s only a couple of hours by train. For some reason though the world was against me yesterday.

- 0630: Leave the house.

- 0635: Return to the house having remembered that I haven’t picked up my meter.

- 0705: Get to the station and ladder my tights getting out of the car.

- 0715: Get on the train and spill my hot coffee on my leg, luckily though I haven’t changed the laddered tights yet, so at least that’s something.

- 0800: Go to the bathroom to change my tights. Somehow during this escapade I manage to pull my infusion set out.

- Because I’m a bit of an idiot and am allergic to carrying lots of junk around I don’t carry a spare infusion set when I’m only out for the day – bad diabetic!

- Because I’m not a complete idiot, I do carry a syringe so that I can get insulin out of the pump should I accidentally remove an infusion set on a train.

- 0805: Stop muttering about the infusion set nightmare and get on with dealing with it.

- 0806: Realise I’ve forgotten what it’s like to use a syringe in public – the man opposite me looks at me a bit strangely as I disassemble my pump and use the syringe to draw insulin out of the reservoir.

- 0807: Wimp out of starting a diabetes education session with the man opposite as my brain is occupied with calculating how much to inject to compensate for the basal I’m going to miss, conscious that I have an important meeting at 1100 that I don’t want to hypo in.

-  0808: Realise that my diary is back-to-back with meetings pretty much all day which will make injecting every couple of hours a bit of a nightmare. Decide to keep an eye on CGMS, aim to inject every 2 hours and deal with problems as they arise.

- 0820: Realise that for all the time I’ve been dealing with the infusion set issue and wondering how I’m going to keep myself alive for the next 12 hours the woman across the aisle has been doing her make up. Why can’t my life be that simple?

- 1127: CGMS alarms to tell me I’m high. Normally I’d press a button for a quick bolus of insulin and no one would notice, but my only way of getting insulin is to take my pump apart and use a syringe. I decide that my kidneys won’t fry from sitting in excessive glucose for the 30mins it’ll take to finish this meeting.

- 1200: Most important meeting of the day is over and CGMS shows 14.6. I resist the instinct to just press a button on my pump and get the syringe out again for a splash of insulin to correct the high and some more basal to cover the next few hours.

- 1405: Why can I smell insulin? So that I can keep track of how much insulin I’ve injected, I’ve been bolusing the same amount on the pump every time I inject. This info is incredibly helpful but as the infusion set isn’t actually in my skin all this insulin is running down my leg and my tights smell of insulin. Nice!

The day continues – check CGMS; thank the god of diabetes tech for CGMS which makes this whole palaver slightly easier; inject; do my job; repeat.

- 2000: Arrive home and insert new infusion set, I feel whole again! Blood sugar is 13.8 which isn’t at all bad after a busy day of managing with only fast acting insulin and a syringe.

- 2245: Jump out of bed to put a couple of new syringes in my handbag for any future emergencies.

- 0257: Remember that I know someone in the London office who also has a pump and who could probably have given me an infusion set. Idiot!

I’m Alison’s pump. She talks about me a lot so I’ve hi-jacked the blog to tell my side of the story. I don’t have long because we’re not apart often so I’ll get straight to it.

I’ve been with Alison for over 2 years now and overall I’d say we get on well. She’s a very enthusiastic owner, she makes me blush at times the way she raves about how fantastic I am. And so she should, I have integrated CGMS, I’m at the forefront of diabetes tech. Personally I don’t think she uses all of my capabilities – I’m sure she could spend more time downloading and analysing all the data I collect for her but apparently she has a life she wants to live.

Most of the time I get to sit in pride of place on her waistband, although don’t think I haven’t noticed that for parties that involve a posh frock I’m relegated to the bra, out of sight. That doesn’t do a lot for my ego.

This job has some good perks. She’s taken me white water rafting, sailing and on safari. I like it that she never leaves me behind although it was a little embarrassing when she spotted one of my friends in the middle of the Costa Rican jungle. Despite it’s owner speaking no English I had to endure the shame of her and Alison attempting to compare pumps via the medium of mime. I was willing my battery to run out so I didn’t have to witness the humiliating spectacle any longer.

I don’t want to sound ungrateful, Alison’s a good owner, but she can be a little hard to live with at times.  

She has a tendency to shoot the messenger. I can’t predict how she’s going to react when I have to tell her that her blood sugar is too high, it’s like Russian roulette. If we’re in public I’m generally safe, she’ll acknowledge the high and put some more insulin in quickly and discretely. If we’re alone it’s a more hit and miss affair. Sometimes its fine, other times there’s furious muttering and occasional violence. Thankfully she’s only thrown me on the bed so far but she does talk about pitching me out of the window which I think is an unnecessary over-reaction. At times like this I fear for my safety.

There’s one thing though that hurts above all else. She thinks I don’t know, but I’ve seen her looking round at other pumps, seeing if there’s anything better on the market, eyeing up my replacement. I know I’ve got less than 2 years until I’m out of warranty and then what? I need to start planning for my future.

The things I know about Alison you wouldn’t believe. We’re rarely apart; I know everything about her, what I’ve told you so far is just a taster. If you want the more salubrious bits, please send money. I have to fund my retirement somehow.

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!