I’m sorry
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
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“paralysed porcupine as a punishment” – great alliteration Alison!
I agree with all of the above, especially the guilt trip thing about diabetes being expensive – I pay a great chunk of my salary each month in taxes which goes some way to funding my wonky pancreas.
Hooray! What a great rant/laying out of some smashing and very valid points of view. I agree with you on all of them. Thanks! And happy Christmas everybody – how’s the cold weather ballsing up YOUR blood sugar?
Happy Christmas Caroline. The cold weather isn’t causing me any problems but snowman building is a great insulin substitute when it comes to lowering blood sugars!
The cold doesn’t really effect my BG either; hot weather screws it up royally though!
Anyway, it’s 8am so time for the first mince pie of day! I love mince pies
Well said alison! And nor should you have to apologise for any of it!
Have a brilliant christmas!!
“Like”!
Hey Alison,
I am new to this site and have a pump and have been at loggerheads with my diaetic team aout a CGMS… can I ask how you managed to get one? Any tips would be appreciated. I have tried my MP who simply emailed the consultant who had already refused me and copy/pasted his email back to me… which was not helpful…
Cheers in advance
Emz
@Emz Stealing one seems to be the quickest and most effective way of getting your hands on one.
I think the general consensus is:
getting hold of pump = difficult
getting hold of CGMS = bordering on impossible (unless self-funded)
@Tim
Nuts, I got to try one for 3 days and I think that made it worse… now I really want one!
@Emz Ask to borrow one again and then refuse to give it back. I met someone who did exactly that with a pump…
@Emz Nothing’s impossible, but you do generally have to be prepared for a bit of a fight to get CGMS funding. I fought long and hard for mine – the first step is to convince your consultant that you need it. Until he says yes, you can’t have any further arguments about funding. Why did he say no? Drop me an email alison@shootuporputup.co.uk if you don’t want to go into detail in public.
I am not sure I can do this with my consultant… He is from the dawn before time began and is awaiting his nice pension. Generally not open to new ideas and just blethers about his wife etc when I see him. He is also very aware how serious the complications I have are… I have seen 2 other consultants and am always referred back to him (he has seen me since I was a child, so about 20 years now). I have already written to him, seen the pump team, spoken to pump specialist consultant etc, I will drop you an email as soon as I get time.
@Emz I know it’s easy to say Emz but I think I’d be looking for a new consultant who was more suited to your needs. Obviously you need to consider the whole of your diabetes care, but if you want a consultant who’s specifically pump/CGM friendly it might be worth asking your local Medtronic rep who they know of in the area who are pro CGM and getting a referral to them.