Newly diagnosed T1D wanting a pump on NHS

Hello @CelalDari

At the moment as a newly diagnosed it would be quite hard to obtain a pump, most CCG’s require you to be out of your honeymoon phase, having attended a DAFNE course and meeting NICE criteria to obtain one, NICE criteria could be that you are testing more than 8+ times a day or having no hypo awareness or having an issue with dawn phenomenon - each CCG has different criteria, but your starting point is having a discussion with your DSN and finding out what their criteria is. You also may not be given a choice as to which pump you can access, I wasn’t given a choice and despite meeting my local CCG criteria, it still then took almost a year before I finally got one, it’s not a straight forward process. That said, the benefits to using a pump are huge, different basal patterns for different events, temp basal patterns ideal for hypos and exercise, micro management in glucose control, less severe hypos etc.

Pumps used correctly and micro managed are invaluable but require effort they are also very expensive hence why there are not handed out in abundance, but that’s why once you are out of honeymoon and keen to start out on pump therapy, having a great relationship with your DSN is vital.

CelalDari said:

I know someone with a young child with T1D and apparently the NHS literally begged her to take a pump but she didn’t. I feel like it’s going to be a different story for me. Anyone with a pump that can shed some light?

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Sorry forgot to mention children with t1 get different support to adults and with pump therapy, accessing a pump is therefore much easier, adults have more hoops to jump through.

I agree with @Juicyj , as a newly diagnosed person it will be very difficult to get one until you are out of your honeymoon period, and even then it will not be easy, I finally got approved in November last year after numerous attempts at trying to get one, and due to Covid I still haven't got it - I finally got approved due to the fact I can't deal with my dawn phenomenon with basal/bolus treatment - after having tried for the previous few years. I had to go on DAFNE/carb counting course before consideration (as far as I can tell they generally don't take anyone until they've been diagnosed for at least 6 months anyway) - despite having been carb counting for 35 years give or take - I also had to prove I could deal with tech (I put the poor nurses doing that check to shame about tech - I work in tech )
In the end I only really got approved cos my previous consultant (who was a bit of a red tape man) retired so I got a new consultant.
Just because it sounds like it will make life easier will not be a valid reason to get you approved I'm afraid . There is a lot of red tape to be got past and proof that no other method will work for you.

CelalDari said:

Is the pump difficult to get?

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Yes.
As I said on another of your pump threads, I only got mine after 15 years of diabetes because I wasn't waking up when I was hypo during the night. I had paramedics called for me more than once.
I was on the priority list for a pump and it still took nearly a year before I got mine.

I'm happy with my blood sugar management on MDI. Even after the DAFNE course which included pumps, I'm not about to sign up for one.

CelalDari said:

I’ve researched pumps and they seem amazing. With pumps like the Medtronic Minimed 640g you can give a standard bolus, a square bolus which is bolus over time and a dual bolus where bolus dose is split into two. In addition to this you have greater flexibility as you can just dial in the carbs while if you are low you can suspend insulin delivery so your BG would naturally rise. The only negatives I see is the tubing and the potential complications such as kinked cannula, pulling tubing out or bleeding.

I’ve been diagnosed with T1D a little over 2 months ago. I really want the pump. Is the pump difficult to get? I know the CGMs are difficult to get and anyways I’ve tried the Freestyle Libre and they’re not for me as it’s rarely accurate.

I know there is two criteria:
- Disabling hypoglycaemia
- Cannot achieve HbA1c below 8.5%

I know someone with a young child with T1D and apparently the NHS literally begged her to take a pump but she didn’t. I feel like it’s going to be a different story for me. Anyone with a pump that can shed some light?

I’m going to start university in September so I want everything sorted out before I go

How long was the process? The coronavirus situation is also delaying everything

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If your looking to go on a pump try the tandem X2 me personally prefer this pump it does most things a pump should do plus it’s much smaller and clearer (digital) front for people with poor eye sights !!!
Pumps give you more freedom rather than injecting a load of insulin on one shot they treacle over time ! Just make sure you bolus for everything that you eat and to make sure your canulas are in your skin properly and you shouldn’t have a problem... you’ll have to do a carb counting course and know the ins and outs of carbs ... you should know your insulin ratio by now ?? Talk this through with your diabetic nurse or doctor because at the end of the day it’s your diabetes do you wanna do what’s best for you! Good luck

Cookiekeri said:

If your looking to go on a pump try the tandem X2 me personally prefer this pump it does most things a pump should do plus it’s much smaller and clearer (digital) front for people with poor eye sights !!!

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However do note that you need to have good reasons why you need a pump to get one funded by the NHS, and even if you do manage that you may not have a choice of pumps, my hospital has a choice of one, or if one with sensors is required (which you would also need a very very good reason for) then there is a choice of one for that - my hospital does not offer the Tandem for instance.

Cookiekeri said:

... you should know your insulin ratio by now ??

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@CelalDari is still in the honeymoon period so the ratios will still be changing I suspect fro however that lasts

I was about 11 yrs in with a hba1c of 120 before I could get my pump so it can sometimes be a fight to get one, did the daphne course very early on in my journey.

Juicyj said:

Hello @CelalDari

At the moment as a newly diagnosed it would be quite hard to obtain a pump, most CCG’s require you to be out of your honeymoon phase, having attended a DAFNE course and meeting NICE criteria to obtain one, NICE criteria could be that you are testing more than 8+ times a day or having no hypo awareness or having an issue with dawn phenomenon - each CCG has different criteria, but your starting point is having a discussion with your DSN and finding out what their criteria is. You also may not be given a choice as to which pump you can access, I wasn’t given a choice and despite meeting my local CCG criteria, it still then took almost a year before I finally got one, it’s not a straight forward process. That said, the benefits to using a pump are huge, different basal patterns for different events, temp basal patterns ideal for hypos and exercise, micro management in glucose control, less severe hypos etc.

Pumps used correctly and micro managed are invaluable but require effort they are also very expensive hence why there are not handed out in abundance, but that’s why once you are out of honeymoon and keen to start out on pump therapy, having a great relationship with your DSN is vital.

Click to expand...

If we can’t have a pump on the NHS, would it be possible to buy one privately? I do know that the insulin we get will still be free.

HomerSimpson said:

If we can’t have a pump on the NHS, would it be possible to buy one privately? I do know that the insulin we get will still be free.

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Hello you can but you’ll need a private diabetes consultant and it’s not just the pump, you’ll need to fund the consumables every month or 3 months. If you want a closed loop, you’ll need to fund the CGM too.

But you’ll need to get the basic training in first, like DAFNE before considering it.

MeiChanski said:

Hello you can but you’ll need a private diabetes consultant and it’s not just the pump, you’ll need to fund the consumables every month or 3 months. If you want a closed loop, you’ll need to fund the CGM too.

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And I believe for some the consumables can actually add up to more than the pump itself over 3 years (not including the CGM) (note: I have no evidence of this, I just remember reading it somewhere a while back)

Rokaab said:

And I believe for some the consumables can actually add up to more than the pump itself over 3 years (not including the CGM) (note: I have no evidence of this, I just remember reading it somewhere a while back)

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It’s the whole running up costs that cost more than the pump. When I was doing training, another person signed up to self fund the CGM and that itself costs more than the pump. (Even with a discount and no VAT) It all adds up right?

I also think its a bit of a postcode lottery

I was classed t1 December 2019 benn classed t2 longer.
March 2020 the suggested pump and referred me
Sept 2020 started using pump

All done under quality of life criteria

The have even funded dexcom and I don't meet the criteria for that.

Good luck. The criteria in my area is you have to have done a carb counting course. You have to prove that you are working hard to get your hba1c on target. You also have to prove you can cope with diabetes on mdi. I know of someone who was going through their rebellious teenage years was drinking (he was 18 at the time) a lot and not looking after himself and they took the pump off them.

If you are not looking after yourself they will not give you a pump. Also if the pump fails you have to be able to know how to handle diabetes with pens.

March 2019 I asked for CGM and pump. Told not a hope for CGM but I could get a Libre. But first I have todo a carb counting course. Ive been diabetic for 38 years at this point. Was told a few month to wait for the course. Hadn't heard anything in 3 months was told its an 8/9 month waiting list. Luckily I got a cancellation the following day. Got the Libre the end of August. Eventually made it to the top of the list for a pump had a meeting in March long story short agreed on the Medtronic 670g. Lockdown happened the following week. I got an email this week saying they have funding but the choices now are Ypsopump or Medtrum.

As someone previously mentioned. It is a postcode lottery. I can only get the option of Medtrum or Ypsopump because they are cheaper. Yet if I move 40 miles away to another Health Board I can get options of TSlim and Medtronic.

As well as being a postcode lottery it can also be a consultant lottery, I tried to get a pump for about 2 years with no success, but as soon as said consultant retired and I got a new one, he agreed with my (previously stated) reasons for needing a pump and I got approved.
My hospital doesn't give a choice of pumps, you get an Accu-check something or if you can make a very good reason for needing sensors you can get a Medtronic (though for me they wouldn't approve the sensors until I'd tried the pump for a while and I'm now trying to get the sensors to go with it - the consultant agreed at beginning of Oct that he'd try and get funding for me ....)

My nurse said something similar, if I wasn’t approved for a CGM, they wouldn’t have approved the closed loop pump. It would have been Omnipod, accu check combo and insight and medtronic640 without the sensors, Medtronic 670G without sensors or tandem (hospital was still waiting for more info on it)

They can stop pump funding if you aren’t doing simple things such as changing your cannula every 3 days on several occasions or not wearing your CGM.

How would they know you weren't changing your cannula every 3 days?

Hopeful34 said:

How would they know you weren't changing your cannula every 3 days?

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With my pump, when you download your BG readings, there’s a mark/symbol of when you’ve changed your cannula, how long you’ve suspended your pump etc on my BG logs.

Tandem records site changes even the amount of insulin used to fill the hose and canula