Returned to the UK & 12 month wait for first appointment

[El_em]

Hi

Looking for some advice.

I recently returned to the Uk after 5 years overseas and have been trying to figure out my type 1 diabetes treatment here.

I have had a blood test with the GP surgery and been referred to the hospital team since the GP don’t generally deal with all treatments for Type 1s. I am on a pump (Omnipod) and CGM (Dexcom G6) - I do not feel hypos at all, and can have multiple a day due to breastfeeding and running around after kids, and this combo has helped me loads with my confidence to go out/exercise and even to sleep longer stretches.

I have been told my the hospital team to expect at least a 1 year wait for an appointment to discuss CGM & Pumps and that already they can say it’s unlikely I will be offered the combo I currently have. The state of the NHS has been in the news everywhere so this isn’t a huge surprise but it does have me feeling very stressed. I will run out of my supplies at the end of February and am not really sure what to do - with the Dexcom I can see it is possible to self pay for it, but it’s unclear about the Omnipod. I’m really dreading having to go back to injections.

Does anyone have any advice on what I can do?

Thanks

 

[EllieM]

My understanding (possibly incorrect) is that GPs are allowed to prescribe libres, so unless you are looping and need a G6 for that you should keep access to a cgm.

If the hospital team won't see you for a year what does the GP suggest for when your supplies run out?

(Lots and lots of virtual hugs).

 

[oldgreymare]

Hi

Looking for some advice.

I recently returned to the Uk after 5 years overseas and have been trying to figure out my type 1 diabetes treatment here.

I have had a blood test with the GP surgery and been referred to the hospital team since the GP don’t generally deal with all treatments for Type 1s. I am on a pump (Omnipod) and CGM (Dexcom G6) - I do not feel hypos at all, and can have multiple a day due to breastfeeding and running around after kids, and this combo has helped me loads with my confidence to go out/exercise and even to sleep longer stretches.

I have been told my the hospital team to expect at least a 1 year wait for an appointment to discuss CGM & Pumps and that already they can say it’s unlikely I will be offered the combo I currently have. The state of the NHS has been in the news everywhere so this isn’t a huge surprise but it does have me feeling very stressed. I will run out of my supplies at the end of February and am not really sure what to do - with the Dexcom I can see it is possible to self pay for it, but it’s unclear about the Omnipod. I’m really dreading having to go back to injections.

Does anyone have any advice on what I can do?

Thanks

How worrying for you. What did the hospital team say when you mentioned that you will run out of pump supplies next month? Obviously running out of insulin/pump supplies would be highly dangerous. You should have a treatment plan drawn up, including one-off and repeat medications. At a minimum consider organising asap if not already done the following prescriptions

- Blood glucose monitor with 50-200+ strips pm (especially if there will be a delay getting a CGM)
- Blood ketone monitor with 50 strips pm
- Fast acting insulin for pump/and or MDI
- Long acting insulin for MDI (I know you really want to avoid going back to MDI, but this may be inevitable at least until your hospital team catches up with the currently evolving new NHS guidance on use of pumps and CGMs)
- Either Abbott Libre 2or Dexcom One CGMs - You have a right to be offered one of these, though your GP may wish this to be agreed with your hospital team. Dexcom One uses the same hardware as the G6 but with downgraded software to make it cheaper. Unfortunately UK GPs and diabetes clinics are mostly much more familiar with Libre products than Dexcom.

Which Omnipod do you use? The latest Omnipod 5 will not be available in the UK until later this year, but I think you may be able to source the Omnipod DASH here privately. If considering self funding a Dexcom, the G7 is cheaper and simpler to use that the G6.

There should be a specialist helpline at the hospital that you can contact if you are now registered as a diabetic under their care. Try at least to get a phone consultation to discuss prescriptions in the near future, but keep lobbying for the system you want. If you continue to be severely hypo unaware and suffering hypos frequently, then pump/CGM options should be considered for you.

 

[AndBreathe]

Hi

Looking for some advice.

I recently returned to the Uk after 5 years overseas and have been trying to figure out my type 1 diabetes treatment here.

I have had a blood test with the GP surgery and been referred to the hospital team since the GP don’t generally deal with all treatments for Type 1s. I am on a pump (Omnipod) and CGM (Dexcom G6) - I do not feel hypos at all, and can have multiple a day due to breastfeeding and running around after kids, and this combo has helped me loads with my confidence to go out/exercise and even to sleep longer stretches.

I have been told my the hospital team to expect at least a 1 year wait for an appointment to discuss CGM & Pumps and that already they can say it’s unlikely I will be offered the combo I currently have. The state of the NHS has been in the news everywhere so this isn’t a huge surprise but it does have me feeling very stressed. I will run out of my supplies at the end of February and am not really sure what to do - with the Dexcom I can see it is possible to self pay for it, but it’s unclear about the Omnipod. I’m really dreading having to go back to injections.

Does anyone have any advice on what I can do?

Thanks

That’s an uncomfortable position you find yourself in, El_em.

I actually replied to suggest you Talk to your GP again, and if necessary ask him to make direct contact with the diabetes consultant you have been referred to. If nothing else, all GPS have email access into specialist units that they use, on a day-to-day basis to seek advice on more complex cases or conditions where they lack decent insight. He won’t get an instant response, but they do have service level agreements for response times.

if you are going to do that, I suggest you prime him with your queries. At the most basic level that would be how you will revive your life supporting insulin, pump supplies and glucose monitoring paraphernalia, explaining that you only have enough to last a maximum of x number of days, making sure you hold back a small contingency, in case something fails.

Let’s face it, without insulin you would be in A&E pretty rapidly, requiring urgent treatment. There must be a way to support you, safely, until your more formal and normalising arrangements can be assessed.

If your GP won’t do that, then I suggest you find any of the diabetes consultant’s names at that hospital (they are all listed on the hospital’s websites and most do private work, to help you choose), and in effect write the letter your GP should have been dealing with. Send that recorded delivery to his/her secretary. She will see he/she sees it.

good luck with it all.

 

[cait 57]

I am prescribed Omnipod dash via nhs and self fund Dexcom G7 ( previously G6). Pump therapy options differ depending on health board you are registered with so have a look at options available to you online in your area and take it from there. Freestyle Libre 2 is available across the UK if type 1 I believe.