I'm sorry

By | 21 December, 2009

SorryI’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

Category: Living with diabetes Tags: ,
Profile photo of Alison

About Alison

Diagnosed with Type One in 1983 at the age of four, Alison's been at this for a while now. She uses Humalog in a combined insulin pump and continuous glucose monitoring system and any blood glucose meter as long as it takes five seconds or less.

36 thoughts on “I'm sorry

  1. Tim

    “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.

  2. Caroline

    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?

  3. Alison

    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!

  4. Tim

    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 😀

  5. Emz

    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

  6. Tim

    @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)

  7. Alison

    @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.

  8. Emz

    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.

  9. Alison

    @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.

  10. Pingback: A healthy dose of cynicism | Shoot Up or Put Up

  11. Profile photo of Rebecca MorganRebecca Morgan

    Hi,
    I am new to this site and already wish I had known about it sooner!!! It’s fab.
    I loved your article Alison. I completely agree with everything you said. None of us asked to be “pancreatically challenged” (I love that phrase by the way). I have despaired many times in the past over the things you mentioned and have found over the years that consultants can be incredibly patronising and do love to state the obvious!!!!
    Im looking forward to reading lots more witty, funny and interesting posts and articles on this great site!!!
    Bec

    1. Profile photo of AlisonAlison Post author

      Thanks Bec, glad you like it, although I know feel under immense pressure to quickly think of some more witty, interesting posts so as not to disappoint 😉

  12. Profile photo of steven richardson

    I again agree with everthing you’ve said, I’m waiting to get a pump at mom. But depends on funding!! I’ve worked since age of 15 and never got anything but needles and syringes thrown at me and told to get on with it, on another web site (no names mentioned) I said I’d like an Omnipod which hopefully I might get.

    On 5 inj. at mom. and someone said they’re expensive and that I should go for cheaper, so someone else could get one!! Sorry I’m not guilty about this because I think I’ve paid in enough and this is my last hope of getting level, if they didn’t allow all these NHS tourists into country there could be no problem I suspect, gooooood on you!!!!!!!

    steve

  13. Profile photo of CecileCecile

    @littlesteve1000: If you want to plug health tourism, you’re going to have to stop poaching our (and other developing countries’) medicos: according to a 2003 BBC report, “seven thousand South African doctors are now on the permanent register of the UK’s general medical council – equivalent to half the number working South Africa’s public health service”…I wonder how many (Shoot Up)-members’ GPs/specialists would start drooling appreciatively if you mention “Mrs.H.S.Ball’s chutney/blatjang”?

  14. Profile photo of steven richardson

    if we didnt have so many illegal immigrants, etc we wouldnt need all these doctors coz we would loose athird of the population!!!!!!!!!

  15. Profile photo of steven richardson

    i know but its only coz of what i said is the truth about nhs tourists etc, coz the genuine people here suffer, telling the truth has now become politically incorrect!!!!!!! when people here are turned down for drugs, medical aids etc then is it any wonder that it winds people up,

    steve

  16. Profile photo of steven richardson

    a fact is a fact is a fact, pc gone mad and will not accept the problem, in russia they used to say it was terrible because of the censorship covering the truth, we now have it in this country

  17. Profile photo of AlisonAlison Post author

    @littlesteve1000 We are happy to debate facts and you are welcome to start a thread on the forum if you have any facts to debate. At the moment your statements don’t contain any facts, the nearest I’ve seen to a fact is your statement that illegal immigrants make up a third of the population, which is quite obviously preposterous.

  18. Profile photo of steven richardson

    im not just on about illegals, thats why i said etc!!!!! as said this country has become a nhs for the rest of the world, so the indigenous population has to suffer i dont see why we have to support the rest of the world, when charity ( although its not because those of us that have paid in over the years national insurance) should begin at home, this is why everything is under so much pressure in this country, the fig. like most of the fig. the goverment giv out including the bbc which has over 600 censors YES over 600 censors are fudged, what im saying when people on this site and others complain about waiting for medical equipment and told its the funding , with the amount of money the gov. has taken in taxes there shud be no waiting, but becoz its very easy to give or throw away someone elses money

  19. Profile photo of Hairy GnomeHairy Gnome

    @littlesteve1000 – I think you’ve mistaken this blog for Have Your Say on the BBC Website. If you choose to believe extreme right wing propaganda rather than think for yourself, then there’s not much any of us can do about it, but it does point to a close correlation between your IQ and your shoe size. Perhaps if you concentrated on constructive comments about diabetes, and ignored the “it’s everyone’s fault but mine” attitude, people might respect and listen to what you say rather than dismiss it out of hand.

    1. Profile photo of steven richardson

      [Comment deleted – I think accusations of this kind are more for the Daily Fail forums, not Shoot Up. As per the Ts&Cs (http://www.shootuporputup.co.uk/resources/the-legals/) Shoot Up is not a democracy, it’s a benign dictatorship. If you don’t like our decision, there’s plenty of Internet where you can set up your own diabetes blog and put forth your views – Tim]

  20. Profile photo of CecileCecile

    A vociferous Pommie in need of a pump?
    Blamed the lack of it on an outlandish clump??
    No need to go trimming those indigenous plants???
    That breed lots of babies for the sake of some grants????
    …And: that outies make medical PRIVATE parts plump?????

    The Dialectic Diabetic(?)

  21. Profile photo of Hairy GnomeHairy Gnome

    Hmmmm… I think I’ve been accused of being a PC fascist, a racist, working for the BBC, and of never having paid taxes… there’s a novelty! I am sorry though, I thought a reasoned argument was the way to go, I was wrong… ‘some people’ and ‘reason’ are an oxymoron. 🙂

    1. Profile photo of steven richardson

      [Comment deleted – oh dear, you didn’t take the (not very subtle) hint. I’ve now banned and blocked you from using Shoot Up. So long.

      Everyone move along now, nothing to see -Tim]

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