Omnipod

[PollJ]

Hello, I'm new to this site but not new to diabetes as I have been injecting for over 42 years. I'm wondering whether anyone else has had trouble being prescribed the Omnipod on the NHS? I have an appointment with my clinic at the end of the month so I don't know definitely, but it seems likely that I will have to wait several years to be prescribed this. It feels like a no brainer to me, and I thought I would be prescribed immediately, but it seems to be a resource issue in that I haven't met the criteria yet. You have to have a predicted HBA1 of 7.5 or above, which is exactly mine and they then prioritised children and pregnant women, or women trying to get pregnant (and at 68 I can't argue that!). I'm just wondering what arguments to advance. (One is that I've just been diagnosed with sleep apnea, which seems to have thrown my control out a bit.) If I can't get it, is there any other alternative to buying it until I reach the top of the list? I have been quoted over £370 per month, which is a huge amount for something that should be available on the NHS. Thank you - any advice/ experience welcome. Poll

 

[BadaBing]

Hello, I'm new to this site but not new to diabetes as I have been injecting for over 42 years. I'm wondering whether anyone else has had trouble being prescribed the Omnipod on the NHS? I have an appointment with my clinic at the end of the month so I don't know definitely, but it seems likely that I will have to wait several years to be prescribed this. It feels like a no brainer to me, and I thought I would be prescribed immediately, but it seems to be a resource issue in that I haven't met the criteria yet. You have to have a predicted HBA1 of 7.5 or above, which is exactly mine and they then prioritised children and pregnant women, or women trying to get pregnant (and at 68 I can't argue that!). I'm just wondering what arguments to advance. (One is that I've just been diagnosed with sleep apnea, which seems to have thrown my control out a bit.) If I can't get it, is there any other alternative to buying it until I reach the top of the list? I have been quoted over £370 per month, which is a huge amount for something that should be available on the NHS. Thank you - any advice/ experience welcome. Poll

The funding is there. According to the NHS England diabetes technology lead, that money has been ringfenced.

There are four main problems.

First, NICE, the clinical organisation that set the criteria for the implementation of hybrid closed loops, have allowed five years for NHS England, hospital trusts and integrated care systems to roll out the technology to everyone eligible. Which means the NHS in England doesn't have to complete the rollout to everyone eligible until, roughly, 2029/2030.

NHS England set the patients who are supposed to get "priority." In the first year of the rollout (2024/25) the priority was to put under 18s, pregnant women and those trying to get pregnant on hybrid closed loops. That group hasn't been finished as the NHS in England begins its second financial year of the rollout.

The priority group for the second financial year (2025/26) set by NHS England is marginally wider, but still doesn't cover everyone eligible.

In the first year NHS England envisaged that outside of under 18s, the pregnant and wanting to get pregnant, no more than 500 completely "new" starters in England would receive a hybrid closed loop.

Even if you meet the criteria set out in the NICE technical appraisal document; and even if you are suffering from diabetes complications that might be improved significantly if you were given a hybrid closed loop; many local health authorities appear to be sticking rigidly to the priority set by NHS England for the rollout.

The process and procedure for the hybrid closed loop rollout at present is such that, for example, it is irrelevant that you might be suffering from eye or vascular complications that would be improved significantly if you were put on a hybrid closed loop, because NHS England and local health authorities are adhering religiously to "priority" groups.

The second problem is that there aren't enough trained NHS staff to train patients on proper use of their hybrid closed loops.

The third problem is the bureaucracy involved. If you don't fall into any of the groups that NHS England consider to be a priority, your diabetic team have to make a "special" case for why you should be funded. I understand that making that case involves completing a 30 page form (I understand that this document isn't even in electronic format, but has to be completed in manuscript form) and it involves getting sign off from your local integrated care system, who provide the money for one or both of the components that comprise the hybrid closed loop.

Can you imagine having to complete a 30 page form - by hand - for every patient who doesn't fall within the priority categories identified by NHS England and make a compelling case for why that patient is deserving of a hybrid closed loop, while still "doing the usual day job" of looking after sick patients on wards, outpatient clinics or in the community?

As far as the Omnipod 5 is concerned, your local health authority in England is unlikely to fund your use of the Dexcom G6 cgm with the Omnipod 5, because it is more expensive than the Libre 2 Plus cgm. This is despite the fact that there is numerous evidence from users that there are significant connectivity issues between the Omnipod 5 pod and the Libre 2 Plus cgm and that the Dexcom G6 has significantly less connection issues with the Omnipod 5.

NHS England haven't even finalised a price with Dexcom for their G7 cgm, which recently became integrated with the Omnipod 5.

The fourth problem is that, as usual, there is a postcode lottery going on across England, which is a mixture of local health authorities not wanting to fund hybrid closed loops, and/or fund particular continuous glucose monitors, bureaucracy, lack of staff.

At the end of roughly 2029/2030, if you meet the criteria set out by NICE in their hybrid closed loop technical appraisal document and you still haven't received a hybrid closed loop you may have a good case to consider and take legal action (assuming of course that one has the financial means, the time and the energy to even consider legal action, bearing in mind that the NHS has on retainer some of the best healthcare lawyers in the country to defend itself when they get sued by patients) against your local health authority for failing to comply with the NICE technical appraisal document concerning the rollout of hybrid closed loops. For now, all you can do if you aren't considered to be part of the priority "group" is encourage, plead, badger and cajole someone in your diabetes team to get you onto a hybrid closed loop sooner rather than later.

Yes, I also understand the price of the Omnipod 5 is what you say it is if you pay privately (anyone paying privately would still need a diabetes consultant to confirm that a hybrid closed loop would benefit the person paying privately). I assume the £370 does not include the cost of continuous glucose monitors, which would be an additional cost (if the NHS isn't funding your cgms already). But why should you pay for the pods if you meet the NICE criteria?

 

[KennyA]

If anyone wants to read the actual document (last updated January 2024), link here:

NHS England » Hybrid closed loop technologies: 5-year implementation strategy

Foreword NHS England’s vision is to ensure equitable and fair access to diabetes technologies while striving to set the international standard for diabetes care. A recent King’s Fund report comparing the performance of international healthcare systems assessed England as having a high overall...

www.england.nhs.uk

 

[PollJ]

The funding is there. According to the NHS England diabetes technology lead, that money has been ringfenced.

There are four main problems.

First, NICE, the clinical organisation that set the criteria for the implementation of hybrid closed loops, have allowed NHS England to give those eligible for hybrid closed loops 5 years to roll out the technology to everyone eligible. Which means the NHS in England doesn't have to complete the rollout to everyone eligible until, roughly, 2029/2030.

NHS England set the patients who are supposed to get "priority." In the first year of the rollout (2024/25) the priority was to put under 18s, pregnant women and those trying to get pregnant on hybrid closed loops. That group hasn't been finished as the NHS in England begins its second financial year of the rollout.

The priority group for the second financial year (2025/26) set by NHS England is marginally wider, but still doesn't cover everyone eligible.

In the first year NHS England envisaged that outside of under 18s, the pregnant and wanting to get pregnant, no more than 500 completely "new" starters in England would receive a hybrid closed loop.

Even if you meet the criteria set out in the NICE technical appraisal document; and even if you are suffering from diabetes complications that might be improved significantly if you were given a hybrid closed loop; many local health authorities appear to be sticking rigidly to the priority set by NHS England for the rollout.

The process and procedure for the hybrid closed loop rollout at present is such that, for example, it is irrelevant that you might be suffering from eye or vascular complications that would be improved significantly if you were put on a hybrid closed loop, because NHS England and local health authorities are adhering religiously to "priority" groups.

The second problem is that there aren't enough trained NHS staff to train patients on proper use of their hybrid closed loops.

The third problem is the bureaucracy involved. If you don't fall into any of the groups that NHS England consider to be a priority, your diabetic team have to make a "special" case for why you should be funded. I understand that making that case involves completing a 30 page form (I understand that this document isn't even in electronic format, but has to be completed in manuscript form) and it involves getting sign off from your local integrated care system, who provide the money for one or both of the components that comprise the hybrid closed loop.

Can you imagine having to complete a 30 page form - by hand - for every patient who doesn't fall within the priority categories identified by NHS England and make a compelling case for why that patient is deserving of a hybrid closed loop?

As far as the Omnipod 5 is concerned, your local health authority in England is unlikely to fund your use of the Dexcom G6 cgm with the Omnipod 5, because it is more expensive than the Libre 2 Plus cgm. This is despite the fsct that there is numerouevidence from users that there are significant connectivity issues between the Omnipod 5 pod and the Libre 2 Plus cgm and that the Dexcom G6 has significantly less connection issues with the Omnipod 5.

NHS England haven't even finalised a price with Dexcom for their G7 cgm, which recently became integrated with the Omnipod 5.

The fourth problem is that, as usual, there is a postcode lottery going on across England, which is a mixture of local health authorities not wanting to fund hybrid closed loops, and/or fund particular continuous glucose monitors, bureaucracy, lack of staff.

At the end of roughly 2029/2030, if you meet the criteria set out by NICE in their technical appraisal document and you still haven't received a hybrid closed loop you may have a good case to consider and take legal action (assuming of course that one has the financial means, the time and the energy to even consider legal action, bearing in mind that the NHS has on retainer some of the best healthcare lawyers in the country to defend itself when they get sued by patients) against your local health authority for failing to complying with the NICE technical appraisal document. For now, all you can do if you aren't considered to be part of the priority "group" is encourage, plead, badger and cajole someone in your diabetes team to get you onto a hybrid closed loop sooner rather than later.

Yes, I also understand the price of the Omnipod 5 is what you say it is if you pay privately (anyone paying privately would still need a diabetes consultant to confirm that a hybrid closed loop would benefit the person paying privately). I assume the £370 does not include the cost of continuous glucose monitors, which would be an additional cost (if the NHS isn't funding your cgms already). But why should you pay for the pods if you meet the NICE criteria?

Thank you for your very detailed, albeit somewhat dispiriting response. It really does seem unfair, if the use of such pumps can improve overall control.

 

[Fairygodmother]

The postcode lottery, and Consultant’s view, is, as always a big factor.
If the Consultant you see understands the toll of forty-two years’ of jabbing and watching blood sugars, and now added to that the disruptive sleep apnea, they are also likely understand the benefits a hybrid loop could bring to your quality of life. This is especially so if you have frequent hypos.
Don’t give up yet.

 

[BadaBing]

Thank you for your very detailed, albeit somewhat dispiriting response. It really does seem unfair, if the use of such pumps can improve overall control.

Sorry I can't be more positive. I can only tell you the facts as I understand them.

I understand the "pregnant women and children first" priority principle. Young, newly diagnosed Type 1's should be given the chance to grow up with technology that reduces to an absolute minimum their chances of developing complications later in life. Anyone can do an Internet search and discover why diabetes during pregnancy is potentially life-threatening for both mother and baby.

But the bureaucracy, the lack of trained staff, the sheer stubbornness, bloody-mindedness and shortsighted attitude of too many local health authorities means that there are currently a significant number of Type 1s who could and should benefit right now from the technology, whose health would benefit from being given a hybrid closed loop, who aren't doing so.

Post pandemic, the NHS is in a frightful state.

 

[PollJ]

Hi I have not got anywhere with the clinic, they are being really unhelpful, even implying that they wouldn't help me if I funded privately. There are many reasons I feel that I should qualify, but they are sticking rigidly to my HbA1 prediction of 56 - it would apparently needs to be 58. They have not taken any more factors into account. Since using the machine for sleep apnea I am sleeping longer than I have for years. Consequently I am not up multiple times in the night, when I would test. I am reluctant to set an alarm to test when I'm finally sleeping better. The problem is that I'm now spiking in the mornings, coming through at around 15.7 having gone to bed with a normal reading. I have written to PALS and to my MP to see if she could do anything on a wider level to make pumps more available. But what else can I do? Do any others fund privately? How does that work out with the NHS clinics? Could I change hospitals? I've been going to mine for 35 years but have really lost faith in them. I am 69 btw and feeling more anxious than I have ever been about my diabetes. I used to just get on with it. Thanks for any help/ advice you can give. Poll

 

[himtoo]

i have written a small list of things that might be helpful trying to get a pump.
i really feel for you on this.

 

[PollJ]

i have written a small list of things that might be helpful trying to get a pump.
i really feel for you on this.

Thank you so much. This is really helpful. I haven't given up - although my clinic seems to be ignoring me at the moment- and I am about to contact Prof Kaur.

 

[PollJ]

Apparently the refusal is because of cuts made by the local Integrated Care Board (which trumpets online that its aim is to improve the life of all patients, which is obviously a joke). I was horrified to learn that out of 1700 patients, my local diabetic care team has only been able to supply 18 pumps so far. 18! I have complained to my MP and also to the ICB. I'm wondering whether it would be possible to get some kind of petition/ publicity from all these patients but can't think of a way of doing this because of confidentiality. Any ideas?

 

[Hopeful34]

Gosh, that's a tiny number @PollJ even taking into account the fact that some people may not need, want or be suitable for a pump.
Is there a local diabetes group you could contact? If not why not start one, you could ask your hospital team if they would be willing to email patients to let them know you're planning a get together/put up a poster for you etc.
This worked for a while in my area, and we met every couple of months - rep came with Libre samples, etc. Sometimes a member of hospital team came too, but not always.
After the initial email, the hospital didn't organise any of it, it was all down to what group members wanted, and organised.

 

[sninge]

Publicity helped me get my first pump funded, it was 19yrs ago now and I used the local paper. I had tried local MP and spoke to plenty of people in my local ' primary care trust ' as it was back then. I was told they hadn't applied for the funding for pumps but then I was lucky enough to be sent a copy of a letter stating that every PCT had been sent funding for pumps. Once I left a message for the relevant people informing them that I had a copy of the letter and I was speaking to the paper the next day, they rang me back and offered to fund my pump 6 weeks later, the story ran in the local paper but as a happy story! I understand they can't fund everyone but it does seem you need to shout loudest at times. I am very fortunate to have a great hospital and team but after all these years I do my best not to bother them as I know there are people out there needing a lot more help than me.
I asked to move hospital a few years ago because my previous hospital was useless.
Don't give up!

 

[PollJ]

Gosh, that's a tiny number @PollJ even taking into account the fact that some people may not need, want or be suitable for a pump.
Is there a local diabetes group you could contact? If not why not start one, you could ask your hospital team if they would be willing to email patients to let them know you're planning a get together/put up a poster for you etc.
This worked for a while in my area, and we met every couple of months - rep came with Libre samples, etc. Sometimes a member of hospital team came too, but not always.
After the initial email, the hospital didn't organise any of it, it was all down to what group members wanted, and organised.

Good idea, I will do that.

 

[Hopeful34]

Let us know how you get on please.