Nhs-funded Pump Without Meeting Nice Criteria?

[SamJB]

I'm on MDI and low carb. My HbA1c has been in the low 6s/low 40s for six years, I have a couple of mild hypos a month. As my control is good I don't think I'd qualify for an NHS-funded one.

I'd like one, because I'd like to autonomise my control a bit more by having a Dexcom G6 (I can fund this) CGM, which I can then use to make real-time adjustments to a pump's basal rate to avoid highs and lows. Plus, I'll be on the radar for closed loop systems that will be out in the next couple of years (hopefully)

I know this might be a bit of a postcode lottery (I live in Chester), but has anyone been given an NHS-funded pump without meeting the NICE criteria for one?

 

[Rokaab]

Not me (I'm in Reading) , I asked again last Thursday and because my hba1c is too good (47) I can't get one and they won't budge - my hba1c may be good, but looking at my libre I'm only in range (4.5-8.5) 42% of the time which is not really what I want.

 

[porl69]

I believe that if you don't meet the Nice guidelines then your CCG would not fund the pump

 

[EllieM]

Just curious here (I'm not in the UK and am not in a pump) but just what do you have to do if you want to qualify for one? your bgs are too good, yet @Kellyp85 below has blood sugars too poor to qualify?
https://www.diabetes.co.uk/forum/threads/why-wont-my-diabetes-nurse-let-me-have-a-pump.156332/

And is it possible to self fund a pump and then get the NHS to pay for consumables? (When I lived in Australia a T1 friend had a pump funded by his private health insurance, who didn't pay for any consumables but did pay for the pump itself).

I've thought about pumps but bad allergy experiences with the libre make me reluctant to go for a permanent needle connection....

 

[Rokaab]

your bgs are too good, yet @Kellyp85 below has blood sugars too poor to qualify?
https://www.diabetes.co.uk/forum/threads/why-wont-my-diabetes-nurse-let-me-have-a-pump.156332

I think pumps are given to people with higher hba1c's to reduce said hba1c down, but if pump doesn't do that then they probably withdraw it to save money as said results show you could get similar numbers from the much cheaper MDI.
Note: this is pure speculation on my part.

 

[Robinredbreast]

I was very ill in hospital ( critically) diabetes team came to see me, friend asked about a GCM and he was told I could get one. At my diabetes appointment a couple of weeks ago, I was told i couldn't, why ? because I am managing okay ( I was put on Tresiba when I was discharged) but my BS can still be up and down and I have lived on my own as a lone adult for many, many years and brought up my baby daughter. Dr T told me if I wasn't managing or my BS readings were all over the place, or......... and this is a good one, if I said I can't finger prick anymore, I hate diabetes, maybe throw a hissy fit or broke down and said I couldn't cope anymore, then I may have a chance of getting one !!!
30 years next year for me, and I walked out and felt despondent and a little brushed aside

Edited to say, a pump was mentioned to me a few years ago, but I didn't take it any further. But, it's the GCM I would like, not actually a pump !

 

[DCUKMod]

I'm not T1, so quite clearly have no personal wisdom to offer. I'm sure I have read there is a site offering guidance for those who don't tick the standard boxes, but my memory deserts me right now. I wonder if @Juicyj or @Mel dCP , as pump users, could help.

 

[LooperCat]

I'm not T1, so quite clearly have no personal wisdom to offer. I'm sure I have read there is a site offering guidance for those who don't tick the standard boxes, but my memory deserts me right now. I wonder if @Juicyj or @Mel dCP , as pump users, could help.

I got my first pump last month after 20 years on MDI - I got it on the grounds of dawn phenomenon and severe monthly hormonal insulin resistance. I was managing ok HbA1c-wise on injections at 43, but I was having to inject tiny amounts up to 18 times a day to do so - including a few during the night. I kept meticulous records on my Libre scanner, so they could be uploaded to Diasend for my team to see without me having to go in.

 

[DCUKMod]

I got my first pump last month after 20 years on MDI - I got it on the grounds of dawn phenomenon and severe monthly hormonal insulin resistance. I was managing ok HbA1c-wise on injections at 43, but I was having to inject tiny amounts up to 18 times a day to do so - including a few during the night. I kept meticulous records on my Libre scanner, so they could be uploaded to Diasend for my team to see without me having to go in.

Mel - Have you seen various folks referred to a website where there is info for "non-standard" potential pumpers? I have INPUT going through my addled brain, but I'm not confident about it.

 

[SamJB]

Just curious here (I'm not in the UK and am not in a pump) but just what do you have to do if you want to qualify for one? your bgs are too good, yet @Kellyp85 below has blood sugars too poor to qualify?
https://www.diabetes.co.uk/forum/threads/why-wont-my-diabetes-nurse-let-me-have-a-pump.156332/

And is it possible to self fund a pump and then get the NHS to pay for consumables? (When I lived in Australia a T1 friend had a pump funded by his private health insurance, who didn't pay for any consumables but did pay for the pump itself).

I've thought about pumps but bad allergy experiences with the libre make me reluctant to go for a permanent needle connection....

That’s a good point, but I wonder whether the up-front cost would be really high. Sounds like it would be difficult to get one otherwise as I don’t meet the criteria.

 

[slip]

I'm sure I have read there is a site offering guidance for those who don't tick the standard boxes,

You mean Inputdiabetes.org

 

[DCUKMod]

You mean Inputdiabetes.org

Ace! Thanks, slip. I looked on there, but fr some reason didn't find the correct pages.

@SamJB - Does this give you any more info: http://www.inputdiabetes.org.uk/alt-insulin-pumps/nhs-funding-pump/

 

[LooperCat]

Mel - Have you seen various folks referred to a website where there is info for "non-standard" potential pumpers? I have INPUT going through my addled brain, but I'm not confident about it.

No, I don’t know anything about that, I’m afraid. I just rang my clinic helpline a few times asking about how best to dose with my DP and IR issues and they said that the best way to deal with them was to go onto a pump. So I thought about it for a month or two, decided to go for it, phoned them on a Monday and got it nine days later. I don’t think that’s the typical pathway, though!

 

[DCUKMod]

No, I don’t know anything about that, I’m afraid. I just rang my clinic helpline a few times asking about how best to dose with my DP and IR issues and they said that the best way to deal with them was to go onto a pump. So I thought about it for a month or two, decided to go for it, phoned them on a Monday and got it nine days later. I don’t think that’s the typical pathway, though!

The steer @slip gave me got me to where I had been thinking about. I knew your journey to pumping had been somewhat atypical and extreme, but could't recall the fine detail.

These days, sometimes I think for my brain to retain anything else, it has to jettison an equal amount of data, stored historically. That's all very well, but somehow it seems to leave behind some really trivla stuff, but dumps the useful bits!

Thanks for responding.

 

[paulliljeros]

Hi @SamJB , I had been T1 on MDI for over 25 years before I even considered a pump. I had terrible control, and a few things clicked, and I turned my life around. With an A1c consistently over 10 I asked my current "specialist" clinic, who I sadly despised, a few times about pumps, but was told categorically "no, not a chance" - we had mutually given up on each other a long time before!
Through research, I found out that it's not only a postcode lottery, but also a clinic lottery. I found a specialist and nurse who were both massively pro-pump, and I transferred with the referral from my GP. A few months prior to the transfer I bought into CGM and at my first meeting, discussed a pump, and was told with historical A1cs, there would be no problem - We just had to wait for a new A1c, and we can move forward.
On return of this A1c I found out it had dropped to under 6, and I was warned that it would be difficult, as I now didn't meet the NICE guidelines! The nurse was amazing, as she was more than willing to argue my case based on other factors - sudden Hypos, DP etc. As I'm sure you are aware you need to be careful what problems you have, as you don't want to get a pump at the expense of losing your driving licence, if you know what I mean!
I no longer use a pump, as I had the SPK transplant last year, but feel free to PM me if I can give you more details about my conversations with my nurse as without her help and advice, I would never have got the pump! I had the pump, in my hand, less than 5 weeks after meeting them for the first time - I hold my hands up and admit I was lucky, like you couldn't believe!

Best of luck, Paul

 

[SamJB]

Hi @SamJB , I had been T1 on MDI for over 25 years before I even considered a pump. I had terrible control, and a few things clicked, and I turned my life around. With an A1c consistently over 10 I asked my current "specialist" clinic, who I sadly despised, a few times about pumps, but was told categorically "no, not a chance" - we had mutually given up on each other a long time before!
Through research, I found out that it's not only a postcode lottery, but also a clinic lottery. I found a specialist and nurse who were both massively pro-pump, and I transferred with the referral from my GP. A few months prior to the transfer I bought into CGM and at my first meeting, discussed a pump, and was told with historical A1cs, there would be no problem - We just had to wait for a new A1c, and we can move forward.
On return of this A1c I found out it had dropped to under 6, and I was warned that it would be difficult, as I now didn't meet the NICE guidelines! The nurse was amazing, as she was more than willing to argue my case based on other factors - sudden Hypos, DP etc. As I'm sure you are aware you need to be careful what problems you have, as you don't want to get a pump at the expense of losing your driving licence, if you know what I mean!
I no longer use a pump, as I had the SPK transplant last year, but feel free to PM me if I can give you more details about my conversations with my nurse as without her help and advice, I would never have got the pump! I had the pump, in my hand, less than 5 weeks after meeting them for the first time - I hold my hands up and admit I was lucky, like you couldn't believe!

Best of luck, Paul

Great story, Paul. I guess I need to get myself seen by a specialist, although I think my control is against me here.

 

[LooperCat]

Great story, Paul. I guess I need to get myself seen by a specialist, although I think my control is against me here.

If you can show records that prove you are having to do a ridiculous amount of work to keep your levels that good, you may get one. Log every dose, and everything you can think of. If you can show that managing your diabetes using MDI in impinging on normal life, it’ll certainly help.

 

[Juicyj]

Hi @SamJB As far as I am aware each trust has an allocation of x amount of pumps given to them each year, it is then the discretion of the consultants who review each case as to who would benefit most from using one. So for arguments sake someone who struggles hugely with BG control, yet displays evidence of being proactive with their control (i.e. having done DAFNE as well as presenting evidence at each appointment of the effort of their management) would be more likely to gain access than someone who is doing ok and managing well already on injections.

 

[Seacrow]

I don't actually know what reasons my consultant gave for putting me on a pump. One of the main ones though has to be without the pump I can't have a basal dose of insulin. Yes it is possible to live without basal insulin, I've done it, but it's not fun.

 

[kitedoc]

I think pumps are given to people with higher hba1c's to reduce said hba1c down, but if pump doesn't do that then they probably withdraw it to save money as said results show you could get similar numbers from the much cheaper MDI.
Note: this is pure speculation on my part.

But HBA!Cs will not tell the clinician or bean counters that you might be suffering from severe hypos, at risk of brain damage etc etc.