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NHS vs NHS-Scotland: Who Treats T1s better?

Discussion in 'Benefits' started by Mark&Phoebe, Oct 20, 2018.

  1. Mark&Phoebe

    Mark&Phoebe · Newbie

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    Hello all,

    I currently live in America, but am planning to return to the UK in a couple of years. The reason for my question is that I'm wondering which of the two is more willing to provide insulin pumps/cgms to a T1, and which seems more generally 'sensible' in how they treat us?

    Right now, I'm fortunate to have very good insurance through work which pays 100% of my pump (Omnipod) costs, and 100% of my CGM (Dexcom) costs as well, but leaves me to pay about £300 per year for my insulin and test strips. I really want to hang onto the pump and CGM as I find them essential to my well-being.

    I've looked up what I can, and it seems that, as long as the doctor I see agrees I need these, it shouldn't be too hard to get approval. But talking to actual users would be much more useful, I think.

    I very much appreciate any insights you can share regarding your experiences, thank you.
     
  2. Deleted Account

    Deleted Account · Guest

    I only have experience of England and would say it is a postcode lottery whether you get a pump or CGM and the odds of getting the CGM are low.
    Some areas allow you to chose your pump. Others give you the choice of one pump or injections and the Omnipod is one of the more expensive pumps.

    For me, I have an Animas pump. This was the only one on offer. Currently, it looks likely to be replaced by a Medtronic when the warranty expires. There is no other choice.
    If I want a CGM or Libre, I have to fund it myself. The criteria for Libre are very tight (e.g two hospitalisation with DKA or two severe hypos requiring support ... which would result in a loss of driving license) and I do not qualify. The criteria for a more expensive CGM such as Dexcom are even tighter.

    Insulin and test strips are covered by prescriptions which are paid for in England if you have type 1 diabetes.
     
  3. urbanracer

    urbanracer Type 1 · Expert
    Retired Moderator

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    It may be wise to refrain from setting anything in stone. If one is to believe the doom mongers we won't even have any insulin available after Brexit!

    I don't know how things work in Scotland, but in England the local Care Comissioning Groups are issuing guidlines about who gets the new tech. Whilst a few areas are freely prescribing it, in others you have to have very poor control of your glucose levels to get it.

    By the time you get here, the situation may have improved, but then again...........
     
  4. Jollymon

    Jollymon Type 1 · Well-Known Member

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    What about just moving to Canada? They seem to like folks with diabetes there.
     
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  5. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hhm, @Mark&Phoebe , that's a difficult one!

    I'm in Scotland, Edinburgh, where NHS Lothian has one of the most liberal policies anywhere in the UK if you want Libre - if you're T1, you'll get it, and we bling it up quite easily with blucon or miaomiao to make it comparable to dexcom.

    I've no idea about pumps. I'm MDI, happy with that, but the last couple of six monthly consultations I've been to, the docs have said, fancy trying a pump, we're going to get you guys on closed loops in a few years time, so try getting used to it.

    It's still a massive post code lottery here at at the moment on the cgm/pump front - don't expect to walk in from America and have the same choices as your insurers will provide, but you'll be getting your insulin and strips for free.

    Here's a link to ECED, a collaboration of the Lothian hospitals doing diabetes stuff:

    http://www.edinburghdiabetes.com

    We also do some really good festivals!
     
    • Informative Informative x 1
  6. knipster

    knipster Type 1 · Well-Known Member

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    I only know about England, but for me I was offered the omnipod fully funded but not cgms or even libres yet. If you want a cgm funded by the NHS then you have to fit a certain set of criteria eg no hypo awareness or play sport at national level. I think the dexcom is a much more widely avaliable system in the US, I don't know of anyone in the UK using it personally - but that's not to say you couldnt get it, but you would most likely have to self fund unfortunately. Test strips, insulin, and any other consumables, however, are fully covered by the nhs.
    Hope that helped and good luck with your move over here!
     
  7. fmacd

    fmacd Type 1 · Member

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    Hi,

    I'm under NHS Highland (in Scotland) and have been on an Omnipod for one year. As you'll know the control is hugely improved on it and the health service are right behind it. This week I'm going onto the Freestyle Libre, also funded by the health board. It might help from our point of view that we have had a leading diabetes professor, Sandra McRury, working out of Inverness for almost 30 years. She has been a real pioneer. I notice someone saying the Omnipod is a more expensive pump but over a year, the latest research says it comes in as one of the cheapest; looks like the initial layout appears prohibitive.

    As others have said, it depends which health board you land up living under...

    Good luck.
     
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  8. drew900uk

    drew900uk · Member

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    I’m under NHS Grampian and I’m a newly diagnosed T1. After a few months I was put on the Libre and both my insulin and the Libre are free.
     
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  9. Connie’s Dad

    Connie’s Dad · Active Member

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    M
     
  10. johnbear2

    johnbear2 Type 1 · Well-Known Member

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    I get pip for having mythocondrial type 1 diabetes complications and complications through melas syndrome (rare genetic condition) anyway I had to go to Glasgow for a face to face when it was dla and it was a degrading process used by a private company to make people give up the dla process and basically call them liars, my point is it a long process. I go down to the genetic clinic in Newcastle as well
     
  11. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    I think eventually the pump/cgm combos will be widely available but from my experience living in Surrey Downs (just outside London) I can get a tandem basal iq with Dexcom but have to apply for special funding to do so. My hospital services are Epsom/St Helier btw.
    I am aware of a trial for pump/cgm s running out of Guildford too (that's a university hospital and its a very good centre). Kings' Hospital London is also a leader in best practices for type 1s I believe.
    My point is that the NHS isn't a single entity in England as these decisions are made at CCG (clinical commissioning group level). So a national body can recommend an approach but the local entities may take a while to implement such things hence the variance between different areas in the same county sometimes.
    Furthermore you will get registered with a GP and they will then assign your treatment depending on their perception of your need e.g. I get hospital treatment (consultant led team) because I've had diabetes complications. This gets me access to the tech! So when you register try and see the GP in person to argue that you need to see a consultant rather than just the practice nurse. Things like frequent hypos as well as prior complications will get you there too. Or you could just be straight forward and argue that you'd like continuity of care to maintain good control and therefore you'd like to see someone who can fund the pump.
    At gp level currently you would only be offered insulin pens and a freestyle libre device on prescription.
    No idea about the socialist fiefdom of Nicola Sturgeon!
     
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