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Omnipod

As to a pump being worth it, is a difficult thing to answer. It depends on the individual circumstances. For me, the best thing about my pump (t:slim) is that I get fewer night-time hypos. The pump suspends insulin when my readings are going low. For me this is a safety factor, as I live on my own.

I have had this pump for two years. I asked for an Omnipod pump but the hospital would not supply one.
I use steel cannulas because the teflon ones caused bad rash.
 
I've been using a tslim with steel canulas for 15 months. Not sure my hba1c is any better but I get massively fewer hypos and the hypers are greatly reduced too. It does depend on the person, but I love my pump and wouldn't be without it. (Disclaimer, I'm in New Zealand where hypos were a reason for getting a pump, and the rules have now changed so all T1s qualify, though it will take a while to get them all changed over. Pumps are tslim or ypsomed, no state funded omnipods.)

Just a wild guess, but I wonder if your clinic has no staff available who are trained to set up and adjust pump settings? With only 1% of their T1s on pumps I suspect that they aren't even giving pumps to pregnant women or children.... Something doesn't seem right there.
 
One of the things that worries me is that I was fairly recently diagnosed with sleep apnea and have to use a CPAP machine every night. As a result I sleep much more soundly and I can't guarantee that I will wake up for a hypo. This is not taken into account, they are just going on my predicted Hb1A, currently 54. I realise this is good, but is obviously an average of the highs and lows, and I am sometimes coming through at around 17 in the mornings. It's much more hit and miss than it was. As for the training, Omnipod will provide this at no extra cost. I wonder if it would be worth investigating one of the other sorts of pumps and whether it's possible to get one privately.
 
You keep mentioning that your hospital diabetes team are not giving you the Omnipod pump. Is your hospital diabetes team offering any pump?

If your concern is about not waking up when you have a hypo, you need a Continuous Glucose Monitor, such as Libre2. Your hospital team should prescribe those. If you are worried not hearing the Libre alarms, you could get your mobile phone connected to a loudspeaker.
 
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They have apparently given around 19 pumps out of 1700 patients - I don't know what sort. Yes good point about the alarm. I have a Libre 2, so I will do that. Thanks.
 
Could I ask those of you who have pumps - are they worth it? Someone from my clinic seemed to imply that they aren't. I'm just wondering whether to go to all the expense of privately funding.
A lot of hospitals don't seem to like funding Omnipod, not sure if it is because it's more expensive than the others my hospital doesn't provide the omnipod as an option either. In terms of is it worth it, it's all down to personal preference, for me it was worth it and still is. It helped my dawn phenomenon massively and now I'm on hybrid closed loop its even better. My HbA1c hovers around 49 or below for the most part with over 70% time in range
 
A lot of hospitals don't seem to like funding Omnipod, not sure if it is because it's more expensive than the others my hospital doesn't provide the omnipod as an option either. In terms of is it worth it, it's all down to personal preference, for me it was worth it and still is. It helped my dawn phenomenon massively and now I'm on hybrid closed loop its even better. My HbA1c hovers around 49 or below for the most part with over 70% time in range
Was your HbA1c higher in order for you to be prescribed a pump or are you in a part of the country where it's easier?
 
A lot of hospitals don't seem to like funding Omnipod ...... my hospital doesn't provide the omnipod as an option either....... for me it was worth it and still is.
I am wondering if I have misunderstood, but I am curious. If your hospital does not provide the Omnipod, how did you acquire your Omnipod?
 
Was your HbA1c higher in order for you to be prescribed a pump or are you in a part of the country where it's easier?
I got mine about 10 years ago now, I fit the NICE guidelines at the time. My HbA1c was probably raised but essentially I had dawn phenomenon and I couldn't change my basal insulin to twice daily as giving it at night gave me hypo's overnight that I never woke up to
 
Could I ask those of you who have pumps - are they worth it? Someone from my clinic seemed to imply that they aren't. I'm just wondering whether to go to all the expense of privately funding.
I was wondering whether anyone had any advice on this question? I had my appointment with the consultant this week. Still no pump, but he did agree to putting me on the waiting list, which is something I suppose, though he said it would be at least three years. He also said that he would write the necessary letter if I decided to fund privately, but sort of implied that doing this wouldn't be worth it, other than freeing up some headspace. He said that it was a postcode lottery, in that some ICBs just go for it. My dilemma is whether I should stick it out or fund privately. Any comments from those of you with pumps?
 
I was wondering whether anyone had any advice on this question? I had my appointment with the consultant this week. Still no pump, but he did agree to putting me on the waiting list, which is something I suppose, though he said it would be at least three years. He also said that he would write the necessary letter if I decided to fund privately, but sort of implied that doing this wouldn't be worth it, other than freeing up some headspace. He said that it was a postcode lottery, in that some ICBs just go for it. My dilemma is whether I should stick it out or fund privately. Any comments from those of you with pumps?
If you are looking into privately funding an insulin pump, please also ask for the price of infusion sets (unless you choose a tubeless pump).

I trust that you have been advised that pumps are hard work, and can go wrong.

Just for information, I received my first pump ten years after first asking for one. Frustrating as it was, asking about a pump once a year and receiving a negative response, I was prescribed one, eventually.
 
Thank you for your response. Would you be able to tell me, please, how pumps are hard work and in what ways they can go wrong? My consultant didn't really say, other than to advise that if it were him he 'wouldn't be in a hurry' to get one.
 
Well, I've had an omnipod for about 9 months now, and overall, despite the problems (see my other recent posts on things I don't like about it), it's working well for me.

Hybrid closed loop is the way forwards - once you've got that ability, control is just better IME. More when it needs to, less when it doesn't, and I don't need to think about it.

It's **** at exercise - but I've recently been playing with telling to stop completely rather than rely on activity mode, making sure I've got a tiny bit of insulin on board (so the sugar goes into muscles) and food coming in. Even activity mode over compensates from the high from the food - it can't cope with the idea that I'm about to burn all that food very soon.

Omnipod is an environmental disaster - fairly big lump of plastic with a bit of electronics which gets replaced every three days. But there's no pipe to get kinked or yanked. I've had a couple where I've knocked them into pulling the cannula out, but I now know what to look for if that happens. I suspect I'd struggle with a piped pump - I'm not doing contact sports, but I'm not necessarily a naturally careful person.

I still monitor regularly, and tend to run low at times and correct with food when things are going well (I'm lucky enough to not need to worry too much about weight, though I do try and keep it sensible), and to shove more insulin in if things are tending high (illness, inactivity) - but putting another bolus in is trivially easy.

I don't work hard at the numbers - doses are based on experience rather than precise measurement, with the knowledge that they vary quite a lot depending on the state of my body (mostly how much exercise I've done recently). But my portions tend to be pretty consistent, so I don't need to change things that much.

It's more of a pain when travelling, because you need all the kit for life without a pump (to cope with eg controller failure), and any pump spares too. The bits add up - spare sensors, pumps, pens, needles, insulin, etc.

Overall I'm happy with it. My numbers are definitely better with it than before.
 
Thank you very much for this. I've read some of the earlier posts about advantages and disadvantages. But what I find really annoying is the postcode lottery element, when some (a lot) of us are denied even the chance to try a pump, in my case after nearly 43 years of injections. Just basing the decision on predicted HbA1 is so one dimensional and short sighted. I'm wondering if there's some way of getting a petition going, or similar, to expose those responsible for making these decisions.
 
Thank you very much for this. I've read some of the earlier posts about advantages and disadvantages. But what I find really annoying is the postcode lottery element, when some (a lot) of us are denied even the chance to try a pump, in my case after nearly 43 years of injections. Just basing the decision on predicted HbA1 is so one dimensional and short sighted. I'm wondering if there's some way of getting a petition going, or similar, to expose those responsible for making these decisions.
I once heard a former UK Secretary of State for Health (who was a qualified doctor) say that healthcare in the United Kingdom has always been rationed.

By extension, healthcare in the UK - particularly since the Health and Social Care Act 2012 (known more familiarly as the Lansley Reforms) - has always been a postcode lottery. This is in large part because local health authorities in England are required by law to balance their budgets each year so they don't spend more money than they have income coming in.

That leads inevitably to different decisions being made by different local health authorities about what they can and cannot afford to provide their patients with during the course of a financial year.

It shouldn't be this way. The NHS so called "10 year forward plan" announced on 3 July 2025 does not propose to change the requirement of local health authorities to balance their budgets each year, nor to give local health authorities "multi-year funding" arrangements. In my opinion a multi-year funding arrangement would ease the pressures to ration care.

By contrast, the current government committed in their manifesto before the 4 July 2024 general election that they wanted to give local councils a multi-year central government funding arrangement, which makes budgeting for local councils significantly easier (although the current government has yet to make good on that pledge to local councils).

The above is generally what I believe is the main problem with healthcare in this country.

Turning specifically to the criteria issued by NICE in the rollout in England of hybrid closed loops and the timeframe, NICE have given local health authorities five years, i.e. until the end of the NHS's financial year (31 March) in 2029, to give everyone who meets the eligibility criteria set out in the NICE technical appraisal document 943, the hybrid closed loop they are eligible for.

Unfortunately the eligibility criteria are strict, so if you are not a Type 1 diabetic and not:

1. Under the age of 18; or
2. Pregnant, or planning to become pregnant, or
3. 18 or older with a HbA1c of 58mmol/l (or 7.5%) or more, or you do not have disabling hypoglycemia (which I understand to mean frequent or unwarned episodes of hypoglycemia causing constant anxiety), AND despite the best possible management to date with at least either an insulin pump, or a continuous glucose monitor, or a flash glucose monitor

then one's local health authority is entitled to refuse to fund a hybrid closed loop.

Anecdotal evidence suggests that in a number of local health authorities it doesn't even matter if you are Type 1 and have complications which might be improved or stabilised if you were to be put on a hybrid closed loop - even when consultants in other specialities dealing with diabetes complications are supportive of your being put on a hybrid closed loop.

When NICE approved and published TA943 in December 2023, I think the newspapers suggested that up to 100,000 Type 1 diabetics might meet the current criteria between 1 April 2024 and 31 March 2029.

I understand that even the current NHS England Diabetes Technology Lead, who was instrumental in getting NICE TA943 implemented, would like the current rather strict hybrid closed loop eligibility criteria relaxed. My understanding is that clinical trials/studies are happening in the background to achieve that.

Of course, you can get a petition going and/or write to your MP. I even understand that it may be possible to have your diabetes care transferred to another hospital, or to seek and pay for privately a private consultation with a diabetes consultant who may be prepared to state in writing that they disagree with your current consultant about whether you meet the current eligibility criteria.

For now at least, the narrow eligibility criteria in NICE TA943 are what they are.

With a government that is now far more focused on spending much more on defence, and bearing in mind that spending on diabetes is I understand already 10% of the entire National Health Service budget, I'm not sure how persuasive a petition would be at this moment in time.
 
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Thank you. Very interesting and very dispiriting, although do you think this might provide a ray of hope?

I understand that even current NHS England's diabetes technology lead, who was instrumental in getting NICE TA943implemented, would like the current rather strict hybrid closed loop eligibility criteria relaxed. My understanding is that clinical trials/studies are happening in the background to achieve that.

I have written to my MP, who was sympathetic, but not much more, I intend to write to her again and ask if this could be raised more generally. I feel sure that her predecessor, Caroline Lucas, would have been more proactive. I have also looked into changing clinics, but the trouble is, other localish ones are bound by the same ICB rules. I suppose it would be fairly easy to persuade a consultant that one was planning to get pregnant - but unfortunately not at 68! It seems we're stuck.
 
Thank you. Very interesting and very dispiriting, although do you think this might provide a ray of hope?

I understand that even current NHS England's diabetes technology lead, who was instrumental in getting NICE TA943implemented, would like the current rather strict hybrid closed loop eligibility criteria relaxed. My understanding is that clinical trials/studies are happening in the background to achieve that.

I have written to my MP, who was sympathetic, but not much more, I intend to write to her again and ask if this could be raised more generally. I feel sure that her predecessor, Caroline Lucas, would have been more proactive. I have also looked into changing clinics, but the trouble is, other localish ones are bound by the same ICB rules. I suppose it would be fairly easy to persuade a consultant that one was planning to get pregnant - but unfortunately not at 68! It seems we're stuck.
I was (still am) a big admirer of Ms Lucas. However, I understand one of the reasons she decided to stand down as an MP at the last election, was her frustration at being unable to influence HM government policy enough - particularly on climate change - without being part of the actual government.

With all due respect to Caroline's successor Siân Berry, I suspect Ms Berry will find it just as frustrating as Caroline did.

For now, what happens to the NHS in England is dependent entirely on the Labour government, the Secretary of State for Health and, most importantly, HM Treasury and the Chancellor.

Of course, that doesn't mean you shouldn't write to your current MP in the manner you suggest.

As for the current NHS England Diabetes Technology Lead (who has probably done more than anyone to give Type 1 diabetics access to hybrid closed loops funded by the NHS in England), and his wanting the existing NICE TA 943 criteria to be relaxed, I'm afraid that is a medium-long term goal. It is unlikely to happen (if at all) quickly.

I suspect that government will want to have sufficient evidence that widening the pool of those eligible will save the NHS in England/HM Treasury money in the medium-long term (and most UK politicians usually only think in five year, short term electoral cycles). That is why the clinical trials/studies that I think are being carried out are so important.

It also doesn't help that I suspect the current NHS England Diabetes Technology Lead will probably step down from his current role in the next 12 months. No one knows who will succeed him, nor whether his successor will have the same passion (or determination to fight with HM government/HM Treasury for funding) to widen access to hybrid closed loops funded by the NHS in England for more Type 1 diabetics beyond the current narrow eligibility criteria.
 
Spot on about the Treasury, that’s where decisions really get made. Without hard data on cost savings, they won’t relax TA943 anytime soon.
Siân Berry will likely face the same limits Caroline did. And if the current tech lead steps down soon, progress could stall.
 
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