3 questions:Anyone using an Omnipod pump? Anyone loving it? Anyone getting it funded by Surrey PCT?

Home Forums Living with type one 3 questions:Anyone using an Omnipod pump? Anyone loving it? Anyone getting it funded by Surrey PCT?

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    • #10115
      Anonymous
      Inactive

      Hi there,

      First EVER post from me, a newbie on the forum and I’m afraid I have to ask a big old favour from people on my first go! I’ve recently been refused funding for the Omnipod pump by Surrey PCT, so I now have to build my case….I need to gather together evidence that other people are being funded by Surrey for this pump and also find out why they chose this over tubed pumps and how it has improved their lives. For me personally it’s all about confidence and regaining a small slice of ‘normality’ (whatever that is!) and greater flexibility which I know would make me feel a load better psychologically. I’ve had diabetes for a very long time and am pretty sure this pump would make things a hell of a lot easier and nicer! Any other feedback would be soooo helpful.
      Cheers in advance!

    • #14275
      Alison
      Keymaster

      Hi @agold welcome to ShootUp!

      I know we have at least two Omnipod users on the site, although I’m not sure they’re in Surrey, but hopefully someone can help.

      Have you called the Omnipod manufacturers and asked them to give you the stats of how many funded users they have in Surrey? Its in their interest to flog more pumps, so they should be willing to help provide you with data to make your case. Medtronic were really helpful for me when I was fighting for CGM funding.

      Have you been refused funding for any pump or just for the Omnipod? When I read your reasons for wanting one “it’s all about confidence and regaining a small slice of ‘normality’ (whatever that is!) and greater flexibility which I know would make me feel a load better psychologically” they all sound like great reasons for wanting a pump, but if I was dishing out funding, I wouldn’t see why you needed an Omnipod rather than any other (cheaper) pump?

      Good luck!

    • #14276
      Anonymous
      Inactive

      Thanks for replying Alison. Yeah, I’ve tried the manufacturers and asked for that data but they said that info was confidential, even knowing the situation! Not very helpful! I think I might try again though.

      There will of course be no medical reason for anyone to be given a patch pump over a tubed pump because they behave in exactly the same way, the added benefits that I and many others feel it gives you that seems small and insignificant to some, are actually huge and very significant to us and can’t be measured on a tangible scale unfortunately. I guess it’s all down to personal choice and that choice being made available to everyone, not just a few depending on their postcode. If it’s too expensive and ineffective, then why offer it at all?

    • #14277
      Alison
      Keymaster

      Definitely worth another try I think (although the cynical side of me wonders if their unwillingness to share means they don’t have any Omnipods funded already by Surrey PCT).

      Couldn’t agree with you more about personal choice. The intangible/quality of life benefits are so important, but also so hard to express in a business case. Omnipod must have been through this argument before with other PCTs, they should really be providing you with a bit of support here. And if they’re not willing to put the effort in to win the business, I’d be asking them how I can have any confidence in them being there for me once I’m actually using their product and need help.

      Have you tried contacting INPUT? They help a lot of people with getting pump funding and might know of Omnipod users in Surrey, or what arguments other Ominpod users have used to get funding http://www.input.me.uk/

    • #14278
      Anonymous
      Inactive

      Hi Anna – I’ve been using the Omni Pod for just shy of four weeks now and barring a few teething problems I’m really enjoying the flexibility and accuracy it affords, and slowly but surely I’m regaining some confidence in managing my diabetes effectively.

      I’m with Barts in central London who actually suggested that I try the Omni Pod. Whether they suggested the Omni Pod because they know me well enough to know that I would never have entertained a pump with tubing, or whether they offer Omni Pod to everyone who is embarking on pump therapy, I don’t know.

      I don’t know whether you’d consider changing PCT’s (or how easy it would be to do), but I can’t recommend Barts highly enough, they regularly go above and beyond what I would expect from a diabetes care team.

      If can be of any further assistance please don’t hesitate to get in touch.

      Good luck,
      Richard

    • #14279
      Anonymous
      Inactive

      Hi Anna,
      I’m the other Omnipodder, I live near Oxford and fall between 2 PCT’s in Bucks and Oxford. The Oxon PCT would have given me the equivalent pump of a brick but luckily the Bucks are still listening to patient choice etc.

      Like you I had been on MDI for over 20 years and decided because I do a lot of sport that the Omnipod would work for me and generally it has with a few teehing problems as Richard mentioned. It is incredibly easy and pain free to put on but an argument you could use is that it is waterproof and the fact you can leave it on for 3 days will improve control etc, no breaks at all in insulin delivery, could be worth mentioning your desire to be an Olympic / synchronised swimmer.

      It would definitely be worth speaking to Ypsomed directly to get the relevant arguments for it to justify the marginally smaller increase in costs and they will probably be able to send you a dummy pod to test out. Do ask me anything else if you have more questions, there aren’t many of us due to the financial rationing of the NHS.

    • #14280
      Anonymous
      Inactive

      Hi Anna,

      I’m getting an omnipod in 2 weeks time- I’m also with Barts (hi Richard- we’re hospital buddies!) and like Richard the omnipod was the first pump I was offered (although they also asked me if I wanted the even more expensive Cellnovo- and offered a choice of tubed pumps too). They gave me one to try out for real for 2 weeks first (not a dummy pod but a working insulin filled one) which suggests to me that is is perhaps easier to use than other pumps- I can’t imagine they would let a novice go wild with one of the tubed variety.

      I would argue that the omnipod is more discreet and more flexible- depends what work you do but perhaps there could be a practical argument there (in my letter of application for it I mentioned that as a teacher I wanted one that I could use without disrupting my lessons/causing a spectacle, and that nobody could yank the tube out of!)

      It might also be worth looking at the cannulation type of other pumps- I particularly like that you can just press a button on the controller to insert the cannula rather than having to self insert, so maybe ‘discover’ a needle phobia?!

    • #14281
      Anonymous
      Inactive

      Hi Anna,
      I am not an Omnipod user but in the process of applying for a pump (tubed) within the Surrey PCT. I wasn’t offered the Omnipod specifically but the team did say there was a choice of pumps apart from the one they were recommending. Where abouts are you based and which diabetes clinic are you supported by? I am just outside Guildford and currently going along to the Cedar centre at the Royal Surrey. I would be interested to find out how you get on as I play a lot of sport and am very active so am concerned about the line getting yanked out accidentally.

    • #14304
      Anonymous
      Inactive

      Hi everyone, thanks so much for your comments. I wasn’t alerted to your replies, otherwise I would’ve replied sooner! I must say you guys on here are so much more supportive and understanding than certain other diabetes forums I won’t name!

      Hilary and Richard, I’m very jealous that you seem to be getting really good and progressive care with Barts. I’m with St.Helier, who, before I came along and started pushing for more choice, only offer one type of tubed pump. But after seeing a demo of the Omnipod when the rep came in (that appointment alone took them months to organise!), they all loved it and would like to use it. The problem is with Surrey PCT who don’t seem to like the additional costs.

      However, I have found out that Surrey PCT definitely are funding the Omnipod for other diabetics elsewhere, so I’m a bit confused. Why good enough for others and not me?

      Anna W, I’m also a teacher and a photographer, as well as really into cycling, so I also am desperate for a pump that can’t be pulled out, get air trapped and that is as discreet as possible. Feeling as “normal” as I can is so important to me and my self-confidence, which has really been affected over the years. I personally think that if I feel better psychologically, my control will be better. This is especially important as I’m hoping to start a family as soon as things improve. It’s so frustrating, as in every other way, I’m as healthy as can be!

      I’m going to make a note of all your ideas for my argument – loving the Olympic swimmer idea! I wish! In the meantime, I’ve got a trial of the Omnipod in a couple of weeks so I will keep you posted!

      Thanks all!

    • #14305
      Anonymous
      Inactive

      Whoops! Sorry, just realised it’s Hilary that’s the teacher, not Anna W. And Anna, I’m based in Epsom.

    • #14334
      Anonymous
      Inactive

      Ok, have just started on my trial for the Omnipod – first couple of days and I immediately noticed the difference- improvement in levels which have been lower and more stable overall with just a few blips. One thing that has been great is no hypos since starting on it four days ago! That’s very good for me. I also love the convenience of it, the bolus calculator is a godsend – much cleverer than me on the maths and the way it takes into consideration the ‘insulin on board’ is great. Love the way I can bolus via the remote device while out and about and have much more flexibility in general…….Unfortunately I’m now heading into my demonic hormonal insulin resistant phase of the month so it’s all gone to pot today! 10-13 all day despite correction doses!….guess it’s going to take some time to work everything out for the different needs of the day/month.

      The aim is to get my control really good or at least very much improved while on the pump to show it works for me and could maybe get some funding!

      Keep you posted……

    • #14341
      Anonymous
      Inactive

      Hi Anna,
      Re getting brilliant control during trial period, I really wouldn’t worry too much about that as I wasn’t expected to get perfect sugars and indeed it’s quite rare during this period and even told that HBA1c could rise a little. It’s just getting used to the pump and all that entails. Re those hormonal swings, at some stage you’ll be able to use temp basal which will get faster reaction than amending Lantus a day or two later. I admit that I still have to get to grip with this though some nine months from starting.
      One problem I found was worrying that a high sugar was as a result of a bad pod rather than a bad me and being unable to see the window with the cannula as it gets steamed up. The new pod will have a light blue cannula so should be easier and with luck maybe you’ll get the smaller pod by the time you officially start although we’ve been promised that it’s around the corner for a year now !

    • #14350
      Anonymous
      Inactive

      @Jane – new pods might be sooner than that- I rang up for replacements today and they would only give me a month’s supply as they expect to be changing to the new ones soon :)

    • #14351
      Alison
      Keymaster

      Hi @agold, thats’s great news that it’s going so well for you. And like JaneC says, the temp basal rates should make a real difference to the hormonal challenges.

      Bear in mind when you’re putting your arguement together for pump funding, that all the positives you’ve listed so far would be the case for any pump, so you’ll need to find some unique benefits to the Omnipod in particular if you want to persuade them to give you that over any other pump. (or hope that the PCT aren’t bright enough to realise that!)

    • #14352
      Anonymous
      Inactive

      Hilary,
      />
      Thanks for that update, it’s the most cheery thing I’ve heard on the smaller pods, I was beginning to think they were a figment of the Rep’s imagination. Smaller will be better, I’m sure you’ll have found that the half an egg size is surprisingly ok to get used to having attached 24 hrs a day but the 30% smaller ones will be even better and easier to hide under clothing. The blue cannula will also be easier to see as the clear one is hopeless, I found it a real problem in the early days knowing if it was inserted or not as the tiny window gets steamed up. I’d be very interested to hear how you are getting on.

    • #14454
      Anonymous
      Inactive

      Hi Hilary @hils,
      How are you getting on with the Omnipod? I’ve been on the new smaller one for a week now, reset a few parameters on the PDM and have got going. The first 2 occluded, the alarm is much louder which I’m not sure is a good thing but the smaller pod is so much better.

    • #14481
      Anonymous
      Inactive

      Hi @Jane, sorry for the delayed reply- I’ve been ignoring the internet over xmas!
      I still love the omnipod, although now I’m annoyed that I don’t have the little ones yet- they gave me another 3months of old pods after my last post. Looking forward to my next restocking though! Do you have the smaller PDM too? There was an ad in Balance this month that made me salivate slightly… it seemed to suggest they would be upgrading us soon.

      My only real niggle is that I’m really struggling to adjust my insulin properly when I exercise- I invariably go low during (I mostly just turn off the basal for the duration) and high after- but that’s probably more of a general pump problem than a specific omnipod one- I’m currently experimenting with different doses of juice!

      I think I’ll like louder alarms as I tend not to hear them currently when the pods are in particular positions. Also, an interesting fact: when I put pods on my legs, the red marks they leave take longer to heal than anywhere else- like weeks rather than days. That’s not a complaint mind, just an observation!

      How are you getting on? Any tips or niggles?

    • #14484
      Anonymous
      Inactive

      Hi Hilary, impressed at the Internet vacation, must try it! Yes basals during sport takes a long time to sort and then when they look ok they change again so it seems to be never ending. I’m trying to get on the Animas sports weekend course in Loughborough in May which I hear is excellent and might provide hints and tips on this.

      Yes I get marks from the pods but mainly on my bum, legs seem to be OK, there are sprays and lotions that help a little, I’ve tried Opsite spray which is not perfect but not bad either. With the little pods, I’ve been trying new places and the best so far oddly is my calf, no marks, good results and although it shows in leggings it’s almost hidden by boots and jeans and nice to have away from the trunk. I’ve also tried a boob when wearing a tight dress, brilliant sugars but I was aware of it by the 3rd day and glad to remove it.

    • #14485
      Anonymous
      Inactive

      Ooooh!!! Getting very excited about being able to put them in different places! Not convinced I’ll try the boobies though…
      For the little marks I did try cavilon spray but I didn’t notice much difference, and it smelled funny so I gave up! I’m just not committed enough as it’s such a small issue ;)

    • #14486
      Alison
      Keymaster

      I’ve heard tea tree oil is good for the red marks. Never tried it myself though.

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