NHS to Offer Closed Loop Pumps to 150,000 T1 Diabetics

[Mike88]

Breaking news...a game changer for many

NHS to offer 150,000 people with type 1 diabetes an artificial pancreas

Move to make more than half of those living with condition in England and Wales eligible for device hailed as gamechanger

www.theguardian.com

 

[Rokaab]

This was previously posted here btw: https://www.diabetes.co.uk/forum/threads/nice-recommends-artificial-pancreas-for-100-000-t1s.193458/

 

[UBFester]

Not posted here for an eternity but this has brought me back - does anyone have any real time experience of running the current 'option' and have any pictures of what the kit is / the size of it etc?

 

[Fairygodmother]

I was utterly miserable for about two hours after reading the announcement: I’ve been asking for a pump for the last ten years or more and refused each time.
I won’t be one of the 150,000. Too old. HbA1c under 7.5. Not pregnant. Only 103 hypos over 90 days. Highs rarely greater than 12.6 despite Libre 2’s unreliability once numbers pass 9
So after 54 years of the relentless 24/7 it’s just get on with it, more of the same.
I’m really glad, however, that the tech will be available to more people. I wish it were there for all, but what a relief for all who’ll be given it.

 

[Juicyj]

I was utterly miserable for about two hours after reading the announcement: I’ve been asking for a pump for the last ten years or more and refused each time.
I won’t be one of the 150,000. Too old. HbA1c under 7.5. Not pregnant. Only 103 hypos over 90 days. Highs rarely greater than 12.6 despite Libre 2’s unreliability once numbers pass 9
So after 54 years of the relentless 24/7 it’s just get on with it, more of the same.
I’m really glad, however, that the tech will be available to more people. I wish it were there for all, but what a relief for all who’ll be given it.

Please please please do not give up.

I truly believe that if you shout and continue shouting that you will get one, I had to push against rejection for mine, I built a strong relationship with my DSN which really helped, my main case was based on NICE guidelines on the basis that it was 'affecting my quality of life' I was micro managing, had made some fundamental life changes to cope with my T1d and this proved to be strong enough to win my case, you need to get your armour on and go into battle, but do not give up, perseverance is key.

 

[Rhyme Indicator]

Please please please do not give up.

I truly believe that if you shout and continue shouting that you will get one, I had to push against rejection for mine, I built a strong relationship with my DSN which really helped, my main case was based on NICE guidelines on the basis that it was 'affecting my quality of life' I was micro managing, had made some fundamental life changes to cope with my T1d and this proved to be strong enough to win my case, you need to get your armour on and go into battle, but do not give up, perseverance is key.

It took me over four years to get a pump even though I'd been put on the pump programme by the clinic and they had written numerous times to the then CCG for funding. The situation was complicated by living in one NHS trust and the clinic being in another. In the end it was the strong intervention of one of the GPs at my practice that got the funding. He was very persistent with them and I recommend that as a course of action.

On my second pump and never looked back.

-R

 

[Juicyj]

It took me over four years to get a pump even though I'd been put on the pump programme by the clinic and they had written numerous times to the then CCG for funding. The situation was complicated by living in one NHS trust and the clinic being in another. In the end it was the strong intervention of one of the GPs at my practice that got the funding. He was very persistent with them and I recommend that as a course of action.

On my second pump and never looked back.

-R

Thanks for writing your story here, it can be done and it's great when others share their experiences.

 

[Fairygodmother]

Please please please do not give up.

I truly believe that if you shout and continue shouting that you will get one, I had to push against rejection for mine, I built a strong relationship with my DSN which really helped, my main case was based on NICE guidelines on the basis that it was 'affecting my quality of life' I was micro managing, had made some fundamental life changes to cope with my T1d and this proved to be strong enough to win my case, you need to get your armour on and go into battle, but do not give up, perseverance is key.

My quality of life is most definitely affected. I suspect that the local CCG, which is notoriously tight fisted, will be burying its loot following the announcement, but I’ll keep trying.
I know the surgery’s DSN is good. However, I’m already on a long long waiting list to see a Consultant: having to hang on til end of September 2024! Waiting time 44 weeks - and that’s following the six weeks between request and reply!

 

[Jaylee]

The 5 year roll out on this has got to be better than the 10 year (mirage) wait for the “cure..”

 

[Juicyj]

My quality of life is most definitely affected. I suspect that the local CCG, which is notoriously tight fisted, will be burying its loot following the announcement, but I’ll keep trying.
I know the surgery’s DSN is good. However, I’m already on a long long waiting list to see a Consultant: having to hang on til end of September 2024! Waiting time 44 weeks - and that’s following the six weeks between request and reply!

Will pm you, that's a silly wait time..

 

[Hopeful34]

I agree it's a silly wait time @Juicyj but I'm on a 20 month waiting list for something not related to diabetes.

 

[Fairygodmother]

Waiting lists are growing faster than the most well-manured weeds right now

 

[oldgreymare]

The 5 year roll out on this has got to be better than the 10 year (mirage) wait for the “cure..”

I think this is amazingly exciting news for many T1s, albeit far from all of us. But the proof will be in the cooking - does this 5 year rollout actually start and stay on track? Sadly the NHS is drowning under so many unfulfilled initiatives. Fingers and toes crossed!

Edited to add: that the FINAL NICE Guidance publication is only expected in December 2023, thereafter ICBs (former CCGs) will need to build these requirements into their budgets - even their starting points will likely be quite staggered. If you think you or your children will qualify, do be (politely) active approaching your diabetes team re progress.

 

[Jaylee]

I think this is amazingly exciting news for many T1s, albeit far from all of us. But the proof will be in the cooking - does this 5 year rollout actually start and stay on track? Sadly the NHS is drowning under so many unfulfilled initiatives. Fingers and toes crossed!

I would agree..

I can’t ever make sense of what my team is doing. Got a phone appointment with an endo early next week.
But I’m not getting any blood work taken with the usual till the week after..??
Oh, then a DSN is going to ring the week after that.

I’m thankful I got nothing serious going on..

 

[oldgreymare]

I would agree..

I can’t ever make sense of what my team is doing. Got a phone appointment with an endo early next week.
But I’m not getting any blood work taken with the usual till the week after..??
Oh, then a DSN is going to ring the week after that.

I’m thankful I got nothing serious going on..

@Jaylee How frustrating - sounds a waste of your time and that of the endo! Unless do you use a CGM and share that with the diabetes team? My reviews (I self fund a G7) follow a typically pattern of my endo being mostly unhappy with my hypo pattern, but he is also super helpful with my general health markers which is where I feel for you with not having bloods done in time to discuss with the endo. Do draw up a list of general questions re your blood results for your DSN especially liver and kidney function, plus follow up with GP if not satisfied with advice.

 

[Juicyj]

Whilst the news of this closed loop tech becoming more accessible is fantastic, it is still not a cure and cannot be campaigned as an artificial pancreas solution. as someone who uses it already and has done for the past almost 3 years, I still have to cope with highs/lows and when things go wrong they can very quickly go wrong. I still have to do alot of work to keep myself in range, I am lucky if I get 70% TIR per week, in fact I am more so between 60-65% each week which is below NICE guidelines.

If you are already achieving a good TIR on injections or pump therapy then you're doing brilliant, but please don't view this as a magic solution to perfect control.

 

[Rokaab]

Whilst the news of this closed loop tech becoming more accessible is fantastic, it is still not a cure and cannot be campaigned as an artificial pancreas solution. as someone who uses it already and has done for the past almost 3 years, I still have to cope with highs/lows and when things go wrong they can very quickly go wrong. I still have to do alot of work to keep myself in range, I am lucky if I get 70% TIR per week, in fact I am more so between 60-65% each week which is below NICE guidelines.

If you are already achieving a good TIR on injections or pump therapy then you're doing brilliant, but please don't view this as a magic solution to perfect control.

Gotta very much agree with this, it can still take a lot of work - probably a lot more for some than others - I'm the slighter older 670g automode and it does require a fair/large amount of attention - even when I dont think I've done anything wrong it can still be chaotic

 

[Jaylee]

Whilst the news of this closed loop tech becoming more accessible is fantastic, it is still not a cure and cannot be campaigned as an artificial pancreas solution. as someone who uses it already and has done for the past almost 3 years, I still have to cope with highs/lows and when things go wrong they can very quickly go wrong. I still have to do alot of work to keep myself in range, I am lucky if I get 70% TIR per week, in fact I am more so between 60-65% each week which is below NICE guidelines.

If you are already achieving a good TIR on injections or pump therapy then you're doing brilliant, but please don't view this as a magic solution to perfect control.

Yep, to elaborate my agreement.

My colleague came up to me & mentioned an issue with the CLS his kid had.
Basically the sensor read low & suspended basal. (From the description.) The meter suggested a correction dose.. (or keep the basal going?) Their team seemed clueless..
I’m not a pumper, but I assume there is an “overide?” They were told not to touch the handset..
Not my place to help out on “that one..”

I can’t see staff training moving that quick?
My experience is DSNs (on average.) still don’t know how I work with the white disc attached to my arm.
They clamour for the data on my meter, but it’s only used to check calibration on a daily basis & to confirm hypos & corrections..

I can see it creating more issues than it’s theoretically meant to resolve for the newly DXd initiated?

 

[CheeseSeaker]

On the positive side - it is a great step forward - possibly not a solution for everyone 'yet'

For those of us who struggle with the current regime - it might help (depending on training knowledge and the individuals appetite to make their life better) or it might not work, thats a case by case basis.

It is a step towards a fully automated Loop - again that will take time and a lot of learning from pharmaceutical companies and end-users, but a step in the right direction.

Don't expect this to move quickly - the funds are simply not available for everyone to give it a go, but at one time I didn't think I'd get a pump, or CGM - so progress in the last 10 years has way surpassed the previous 40.

Right now I'm running a DIY Fully Closed Loop that means I don't tell it what I eat, or even that I'm exercising - but it handles it ok. That really is the future for us - eventually 'Plug-and-play' and this is a step towards it - just not yet

 

[Westley]

At my last appointment my team said they could maybe get me approved for the Omnipod 5+Dexcom G6, and I've been seriously considering it.
For years I've been put off pumping by the size of the devices and external tubes, but for something that small and self contained and semi-automated it becomes a lot more appealing.

However, when I read about the problems and TIR some people pumping get, I get turned off it again.
On MDI I'm currently getting around 90% TIR with HbA1cs in the high 40s, or >95% and low 40s when I eat keto.
It takes a lot of work though, and even though I stay mostly in range I often feel I'm constantly bouncing up and down between the limits.
(and my control can get much worse during periods with less regular schedule)

Could I be getting much flatter curves with less work?
or am I better off carrying on as I am until the systems improve some more?

Based on the improvements in this tech I've seen over my lifetime, I believe at some point switching to a closed loop pump will be clearly much better than even the best possible MDI regime. I'm not sure that point has been reached yet though.