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

[BadaBing]

It is great news that Professor Kar and his colleagues have gotten this over the line. They deserves massive congratulations.

It is right that young people up to the age of 18 will, - if they want to - benefit from the new technology immediately with the only criteria being Type 1. Pregnant women or trying for pregnancy too.

Professor Kar has said repeatedly in webinars the NICE Technical Appraisal Document will be reviewed in 3-5 years and it is his hope hybrid closed loops will become standard care for all Type 1s eventually.

As for me, I wouldn't mind a patch pump hybrid closed loop. At the moment that means Omnipod 5. However, I understand from my diabetes team that in my health area the ICS/ICB won't even consider it until the expensive Omnipod 5 comes down in price and it integrates with less expensive continuous glucose monitors than the Dexcom G6 (or G7). So it needs to integrate with the Libre 2.

Has the NHS in England and Wales managed to negotiate a price centrally with Insulet for the Omnipod 5 that our taxpayer funded healthcare system can live with?

 

[Nicola M]

I’m one of the people who did the Trial for this before it has become available for everyone. It has helped me tremendously with getting my HbA1c back into target and just overall better blood sugar control. I suffered quite terribly with burnout so having a device that takes over most of the control was a lifesaver, although as has previously been said it is not a perfect or magic cure and there’s still a lot to learn and improve with these systems.

 

[Mark J]

It is great news that Professor Kar and his colleagues have gotten this over the line. They deserves massive congratulations.

It is right that young people up to the age of 18 will, - if they want to - benefit from the new technology immediately with the only criteria being Type 1. Pregnant women or trying for pregnancy too.

Professor Kar has said repeatedly in webinars the NICE Technical Appraisal Document will be reviewed in 3-5 years and it is his hope hybrid closed loops will become standard care for all Type 1s eventually.

As for me, I wouldn't mind a patch pump hybrid closed loop. At the moment that means Omnipod 5. However, I understand from my diabetes team that in my health area the ICS/ICB won't even consider it until the expensive Omnipod 5 comes down in price and it integrates with less expensive continuous glucose monitors than the Dexcom G6 (or G7). So it needs to integrate with the Libre 2.

Has the NHS in England and Wales managed to negotiate a price centrally with Insulet for the Omnipod 5 that our taxpayer funded healthcare system can live with?

Yes! Omnipod 5 available in Kent. You have to use the G6 with it but I find it better than the libre2 which cannot be recalibrated.

 

[curly]

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.

Same. Of course I’m glad to see the advances in technology, pleased for the children etc. But I can’t get a pump and won’t get this either. Can’t lie that it stings.

 

[eventhorizon]

Same. Of course I’m glad to see the advances in technology, pleased for the children etc. But I can’t get a pump and won’t get this either. Can’t lie that it stings.

Why can't you get a pump?

 

[curly]

Why can't you get a pump?

Because the consultant literally laughs at me every time I ask. I don’t meet any of the criteria. My A1Cs are consistently in the 5%s, I am not a child, I am not pregnant or planning to be, I don’t have disabling hypos etc. On the one hand I acknowledge that I’m lucky to be in that position and there are others who have it far worse; on another it’s not just luck at play but an awful lot of hard work. Pumps are no longer a rarity like they were 20 years ago, and I feel when I read posts by others that there’s a whole amazing world of diabetes tech out there that a whole group of us are just excluded from. I receive my care at a leading hospital, so it’s not that there are limited facilities there, just that I’m not permitted to access them. Of course I understand on a rational level that resources are limited and we have to prioritise certain groups who need them most. I’m talking from a personal, emotional level about how it feels to put so much work in and be completely on the outside looking in while all these amazing things are developed and rolled out but completely inaccessible. Rant over.

 

[Fairygodmother]

@curly, your words echo how I feel too.

 

[curly]

@curly, your words echo how I feel too.

I’m sorry this is the case for you as well! I swing between feeling guilty about being selfish and really upset about it, then downright angry. I suspect there must be a whole large group of us out there who are falling in the gap. My worry is that we will now forever be in this gap - that we will become less and less eligible for every new thing that comes out as we’re so far behind, and of course we will never now be children, pregnant women etc. Unless something changes radically in our health or ability to manage the condition I’m wondering whether we’ll ever find a spot in the queue.

 

[In Response]

I am one of the very lucky and privileged ones who has a pump. However, I have zero expectations that I will get HCL any time.
Like @curly and @Fairygodmother I am "persecuted" for putting in the effort to maintain good TIR and Hba1c. I do this by putting in lots of effort, constantly tweaking my doses, giving myself a top up bolus when stressed, educating myself about what I can do to improve with the technology I have available, funding additional tech myself, .. .
It is frustrating to hear about those who put in less effort but get greater rewards.
I am not suggesting those with HCL have not struggled.
But I would like more recognition for the effort I put in and how much it affects my quality of life than a pat on the back.

And I write this as someone with a pump so could only imagine how much this feeling is greater for those without.

 

[EllieM]

I realise I'm probably/possibly being naive and optimistic, but only a couple of years ago T1s in the UK were struggling to get access to a cgm...

The tech is there, and improved TIRs and hba1cs save the NHS money. I have to hope that the roll out will eventually include all those who want a pump.

 

[curly]

I am one of the very lucky and privileged ones who has a pump. However, I have zero expectations that I will get HCL any time.
Like @curly and @Fairygodmother I am "persecuted" for putting in the effort to maintain good TIR and Hba1c. I do this by putting in lots of effort, constantly tweaking my doses, giving myself a top up bolus when stressed, educating myself about what I can do to improve with the technology I have available, funding additional tech myself, .. .
It is frustrating to hear about those who put in less effort but get greater rewards.
I am not suggesting those with HCL have not struggled.
But I would like more recognition for the effort I put in and how much it affects my quality of life than a pat on the back.

And I write this as someone with a pump so could only imagine how much this feeling is greater for those without.

Yes. I know that a lot of people with the technology have it because they have been unable to maintain good control despite the best of efforts. But, the system we have that encourages us to work hard for the best control that we can - rightly so, it’s in our own best interests! - but then says ‘great, well done- now you’re doing so well we will leave you out of new developments’ is just maddening.

 

[curly]

I realise I'm probably/possibly being naive and optimistic, but only a couple of years ago T1s in the UK were struggling to get access to a cgm...

The tech is there, and improved TIRs and hba1cs save the NHS money. I have to hope that the roll out will eventually include all those who want a pump.

Yes. I didn’t have a cgm 2 years ago. It’s good to be optimistic rather than cynical and downtrodden like me.

 

[Jaylee]

Looking at this logically. (& from what I know with my colleague’s kid on a CLS.)

These youngsters will keep coming with the diagnosis.
& the established diagnosed will no doubt want kids themselves.

“The future’s the duty to rub out the past….”

 

[eventhorizon]

Hmm it does seem unfair. However before I was offered a pump I wasn't pregnant, had no undue problems with hypos, had a reasonable hba1c and was generally getting on with life. The main reason I got a pump, to achieve the above I was taking 8 to 12 shots of insulin a day.

Are there any different angles you could approach your team from? Lots of testing, DP, anxiety, lots of shots, stopping or interfering with daily life, your job, a disability.....???

There are many different valid reasons why one therapy may work better than another. Make sure you put your reasons in writing and then question everybody why your circumstances don't warrant your choices.

 

[Fairygodmother]

I’m sorry this is the case for you as well! I swing between feeling guilty about being selfish and really upset about it, then downright angry. I suspect there must be a whole large group of us out there who are falling in the gap. My worry is that we will now forever be in this gap - that we will become less and less eligible for every new thing that comes out as we’re so far behind, and of course we will never now be children, pregnant women etc. Unless something changes radically in our health or ability to manage the condition I’m wondering whether we’ll ever find a spot in the queue.

Yes, it’s the feeling that you do not matter if you’re not eligible for a pump and some small relief. Maybe it would be different if it had been decided that everyone with Type One would have one.
I do wonder how long it will take to give pump training to all who are eligible. Has the NHS that capacity? It seems that waiting lists are growing daily.
For the last few years I’ve had difficulty in adjusting doses to keep in range; even without adjusting for time of day, colour of underwear or pasta.
However, when I requested an appointment with a Consultant to gain more expert help I discovered that I would need to wait a year to see one.

 

[Jaylee]

I realise I'm probably/possibly being naive and optimistic, but only a couple of years ago T1s in the UK were struggling to get access to a cgm...

The tech is there, and improved TIRs and hba1cs save the NHS money. I have to hope that the roll out will eventually include all those who want a pump.

“Keep doing what you’re doing..” is an even cheaper option, from my department.

 

[EllieM]

“Keep doing what you’re doing..” is an even cheaper option, from my department.

where's the "cynical" emoji ???

 

[Jaylee]

where's the "cynical" emoji ???

I’m actually quite thankful to live in a country that supports on the “basics.”
At least I don’t need to hop a boarder to “score” what keeps me ticking over…
I also take pride my tax contributions help the more disadvantaged, too. (With the health care model the UK provides.)

I got a colleague with a kid on a CLS. They would struggle with finance for it. (Though, I’m still not convinced the HCPs are that clued up on it. From his feedback.)

 

[curly]

Hmm it does seem unfair. However before I was offered a pump I wasn't pregnant, had no undue problems with hypos, had a reasonable hba1c and was generally getting on with life. The main reason I got a pump, to achieve the above I was taking 8 to 12 shots of insulin a day.

Are there any different angles you could approach your team from? Lots of testing, DP, anxiety, lots of shots, stopping or interfering with daily life, your job, a disability.....???

There are many different valid reasons why one therapy may work better than another. Make sure you put your reasons in writing and then question everybody why your circumstances don't warrant your choices.

Thanks - this is interesting to hear. To be honest, I’m at a loss regarding arguments to put forward that I haven’t already tried. The most memorable was talking about impact on mental health/increased anxiety - was told that the answer to that was to worry less about TIR, aim for 70% but no higher. Who did you put your case in writing to, please?

 

[curly]

Yes, it’s the feeling that you do not matter if you’re not eligible for a pump and some small relief. Maybe it would be different if it had been decided that everyone with Type One would have one.
I do wonder how long it will take to give pump training to all who are eligible. Has the NHS that capacity? It seems that waiting lists are growing daily.
For the last few years I’ve had difficulty in adjusting doses to keep in range; even without adjusting for time of day, colour of underwear or pasta.
However, when I requested an appointment with a Consultant to gain more expert help I discovered that I would need to wait a year to see one.

I think one year is about average - I am registered with a consultant and see them once a year.