I am a doctor who works in the NHS in uk and was diagnosed with t1dm in January of 2023. Very quick with getting access to CGM. Awaiting date to complete course in order to get a pump
Look up “DAFNE Closed Loop Essentials” - it’s written to do exactly that with no need for any further HCP intervention in order to get started. Your clinic will need to refer you but it doesn’t matter if they’re a DAFNE centre or not.
i was diagnosed march 2024 and i had a 2 day hospital stay with a dexcom g6 set up on the second day and an omnipod early may!! im so grateful for the NHS
I assume that's the DAFNE course? Have you asked your team about doing BERTIE instead? It's an online version, free, you can sign up yourself at any time and should be accepted as an alternative.
I've got my Training Course for an Omnipod 5 on 29th of this month. I went onto the Waiting List in February having had a really bad Hypo (seizure, badly bitten tongue, dislocated shoulder) having acted on incorrect Libre 2 Data in November. They moved me to a Dexcom 6 in February in advance of the move to HCL and I'm really excited to take back control of my management (to the point I'm actually getting quite emotional right now thinking about it).
I can't rely on a sensor I just can't for this reason. Insulin can save our lives but it can also end it. I did G7 and now Libre 3 and between the 2 the Libre 3 is more accurate then G7. My control is still excellent managing it myself average sugar 104-1110 with 98% in range.
I self fund Omnipod 5 at the moment my Hba1c being way too well controlled to be eligible. I even use Dexcom one sensors nhs provided and use an Anubis G6 transmitter. I would not be able to afford this any other way. The tech is life changing. I’ve still the same Hba1c with much less input
What is important to mention is that NICE don't pull their recommendations out of nowhere. How money gets apportioned is based on Whole-Life Care of a Patient and VALUE. ~5yrs ago, the NHS started to see in their Data a dramatic reduction in HbA1C and instances of Severe Hyper/Hypoglycemia in Patients who were using Flash Glucose Monitoring/CGM systems. The Data was so overwhelming that it supported widespread rollout to all T1Ds who wanted these systems over a number of years. The new recommendations are also based on the Data starting to support the idea that T1Ds who have access to CGMs AND Pumps are much less likely to cost the NHS money through the development of complications that require treatment. Add to this the falling cost of pumps (especially when you consider that the NHS is the largest single-entity purchaser of Medical Supplies/Pharma IN THE WORLD) and the development of AI and we will be at the point towards the end the 5yr plan (and based on the Flash/CGM Rollout) that every T1D will have access to HCL if they want it.
The NHS probably saw a sharp increase in the number of ambulance calls to treat low bg as well, right? People can't fight to reach a very good (low!) a1c and not experience some low bg. A pump that shuts off when the bg is going lower and increases the delivery of insulin when the bg is mounting keeps people from passing out from low bg. The number of interventions, then, has to have gone way down for those people with low A1C and a hyprid system that controls the delivery of insulin .
We have an advantage to get insulin Pump if you purchase it by your own money from neighbor country. We get minimed 780g after a month, once diagnosed. Then my son was 4 year old. But only issue is that we still made to order pump's accessories and consumables not in Azerbaijan. In this issue one Turkish citizen support us, he buy them then bring it us, when he comes to Azerbaijan, and we pay for consumables. Thanks to him for such humanitarian action. But it would be better if we get all consumables from minimed company directly in our country. That is only difficulty for us
As a UK T1 (52M) it's frustrating that I don't meet the criteria due to HbA1c of about 6.5%, but I do understand the reasons. Everything in the NHS is about clinical need, and I can absolutely see that children, pregnant people or diabetics with more difficulty achieving control have a higher need than I do. Before CGM became available I used to self-fund, which was expensive, and I'm considering the same for this but the costs seem to be even more expensive, it's likely that this will reach me eventually so funding is likely to only be for a few years. I wouldn't increase my HbA1c to meet criteria, I doubt it would work as it would have to be for a long time as they would see my history, it's not going to just be based on one measurement. I am going to tell my Endocrinologist that I'm planning a baby at my next appointment, should give them a chuckle. Thanks for coming on this Anne-Marie, Diabetes teams in the NHS have kept me alive now for 46 years since being diagnosed thanks to passionate professionals like you.
I’m originally from the UK and lost my airline career due to T1 diabetes. The UK has a fabulous healthcare system and after 30 years of experiencing the U.S. health care system it is absolutely horrendous. The cost of supplies even with insurance here in the U.S. is very expensive. It’s all about the drug companies revenue result and companies like Medtronic and Omnipod are off the charts expensive. For each pod on the Omnipod system is $70 for each pod. Rediculous a pod that I change every three days. I’ve been on the pump now 25 years starting with Minimed pump.
I am so lucky and grateful for me to have an insulin pump it has made such a difference to my blood sugars so thankyou to the NHS I will be forever grateful for this amazing opportunity ❤
The CGMs have made a real difference, also here in the UK. But what about the AID systems like Omnipod 5? People are on waiting lists for it, understandably. But what can we expect from it? I made a short video about a recent study showing that only 39% of adults on Omnipod 5 meet the 70% time in range target. ruclips.net/video/RBrytdfPuf0/видео.html Of course, maybe that is a really good percentage, but why do so many people still not meet the standard, given some of the best technology? I think that education plays a big role in this, including learning to carb count and understanding well how different foods affect glucose levels. Your channel of course plays a key role in helping to get people educated (and hopefully my channel and many of the other good channels out there as well).
I’m in the uk had type 1 53 years, I’m lucky with no complications apart from 1 lot of laser treatment 1990s and another lot 2008. I started on the Omnipod 5 February after using the Dash before hand for about 8 months definitely a game changer would never go back to mdi’s
I'm in Australia using Omnipod DASH and iAPS (DASH pods were only subsided last year, so 5 won't be available for years). The pods are subsidised through the NDSS and private health insurance. They cost around $30 each month, and are limited to 13 boxes for 12 months. My pod lasts 2 days (2.5 days at most) so I have to go 3-4 months back to pens, or pay $170 each month to continue. I like our system and we are fortunate that medication costs are low but private insurance limiting the number of pods assuming that everyone will last the full 3 days is ridiculous. Patch pumps are the only type of pump that I am open to after my issues with Minimed years ago. Stopping iAPS for months and then starting again isn't going to be fun.
@@DunFiddlin I did speak to my consultant a month ago but I was told there r a lot of ppl on the waiting list for a omnipod 5 so I will have to continue to wait. NHS SUCKS👍💯
I live in the UK and I've been using a pump since 2009. Since starting on an HCL system a year ago, I've had fantastic results. I think Type 1 HCL system users should set up a voluntary group either within their local area or nationwide, that could offer support to new users.
I live in Louisiana and work for a great company. Most of my diabetes stuff is free if filled through the pharmacy. They consider it preventive care. I am a very lucky person. I feel blessed. The state I live in because I have blue cross, here it is way more expensive. My insulin pump went from my portion being $750 to $2900.00. That I'd my biggest cost every 4 years. If I liked omnipod, it would be free because it can be billed thru RX. I fill mine through DME so it's more because pur people in office are $ hungry.
Quick note, the guidelines only apply to England. Other countries in UK have different guidelines, I live in Scotland which has different guidelines. Hopefully Scotland will get similar access, though slightly wider criteria in Scotland, not same push to make HCL available in the same way as England at moment.
In Finland price is 0 euros for pump, infusion sets and sensors, insulin is 4,5 euros per 3 months, so 1,5 euros per month. Your doctor prescribes you pump in the same way than they prescribe insulin.
Awesome interview and thanks for helping the diabetic community; 71 yo here from Canada, T2D HbA1c > 8%, will the insulin pump helpful? Please continue your great works.
I guess you are on insulin? Are you on MDI? Do you have a RTCGMS (real time continuous glucose monitoring system) or flash gms like Libre 2? The government plans only fund people with type 1 diabetes, i believe. Certainly that is true in Ontario. However, private plans will fund t2d's, I gather. Since a lot of people are mistakenly diagnosed with t2d when, in fact, they are t1d's, It's important to ask for testing to determine what type you are. In Ontario, I believe you have to pay for this testing for anti-bodies yourself.
Im in UK and I dont think its quite correct to put it that way, we get free healthcare when needed but when things need funding like pumps then they gotta prioritise the people that need it most. You can of course pay yourself but you have a choice at least. I got on CGM 2 years ago and I got on a pump over 20 years ago. The new guidelines opens up automated pumps to more people however they start off with children first. The NICE guidelines are not saying must be under 18 as I am 37 and my A1C is 6.2. So I am not sure what she saying is true for all hospitals.
Regarding doctor's not being familiar with the differences in the technology I am militant about patients not relying on the doctor for that! That causes helicopter doctors where the patient never takes ownership of THEIR disease. I got T1D at 13 in 1971. My parents never did anything for me because in the week I was in hospital, I was taught that. The same happened when I started using a pump and cgm. I learned it, I own it.
Still, how much faith do you have in a physician who doesn't understand the technology you are using? How much faith do you have in a CDE/RN pump trainer who hasn't got a clue? Or is down right obnoxious. They are not much good, are they, if they don't understand the pumps you are using? Why are you consulting them then?
Hi, i have questions. Last week someone diabetic fainted because of either low or high blood sugar. She didn’t have anything with her or on her. We didn’t know what to do, she did breath. We all just looked at her and didn’t know what to do. What should we do in a situation like that.
@Ba1ster It depends on what ICG you’re under. Some ICG’s are very pump focussed - like those in Central London - while others are less so. My area, North Herts, which is just north on London has a very long waiting list. Where in the country are you?
@@marcusjackson9978 isn’t that why NICE made it simple where u should be able to get one if u wanted on. Also the restrictions are simply not there wheee I live. I live in Leeds West Yorkshire
@@marcusjackson9978 West Yorkshire . Shouldn’t be the case though. If someone wants to go onto pump therapy she should be allowed to. The process is quite simple
sorry to say the UK nhs is a total joke, i am diabetic and I am having constant problem with just getting hold of insulin again from this post I have been locked out of getting my insulin
So glad we have the system we do in the US. I am a global employee and all those universal systems are horrible. All my friends that live in those areas need to purchase additional insurance
I live in the Netherlands and am very happy that everybody gets the same care. That's a social system. I have a GCM and everything is paid. I can choose mine own insurance (oblidged but I choose mine company).
you need different friends. our UK NHS is imperfect but I've experienced the US system which is designed by and for the insurance industry. in the UK our NHS has been under attack from the last Conservative government. This will change.
I am a doctor who works in the NHS in uk and was diagnosed with t1dm in January of 2023. Very quick with getting access to CGM. Awaiting date to complete course in order to get a pump
Look up “DAFNE Closed Loop Essentials” - it’s written to do exactly that with no need for any further HCP intervention in order to get started. Your clinic will need to refer you but it doesn’t matter if they’re a DAFNE centre or not.
i was diagnosed march 2024 and i had a 2 day hospital stay with a dexcom g6 set up on the second day and an omnipod early may!! im so grateful for the NHS
I assume that's the DAFNE course? Have you asked your team about doing BERTIE instead? It's an online version, free, you can sign up yourself at any time and should be accepted as an alternative.
I've got my Training Course for an Omnipod 5 on 29th of this month. I went onto the Waiting List in February having had a really bad Hypo (seizure, badly bitten tongue, dislocated shoulder) having acted on incorrect Libre 2 Data in November.
They moved me to a Dexcom 6 in February in advance of the move to HCL and I'm really excited to take back control of my management (to the point I'm actually getting quite emotional right now thinking about it).
Take back control by giving some of it away! 😂
I can't rely on a sensor I just can't for this reason. Insulin can save our lives but it can also end it. I did G7 and now Libre 3 and between the 2 the Libre 3 is more accurate then G7.
My control is still excellent managing it myself average sugar 104-1110 with 98% in range.
I self fund Omnipod 5 at the moment my Hba1c being way too well controlled to be eligible. I even use Dexcom one sensors nhs provided and use an Anubis G6 transmitter. I would not be able to afford this any other way. The tech is life changing. I’ve still the same Hba1c with much less input
What is important to mention is that NICE don't pull their recommendations out of nowhere. How money gets apportioned is based on Whole-Life Care of a Patient and VALUE.
~5yrs ago, the NHS started to see in their Data a dramatic reduction in HbA1C and instances of Severe Hyper/Hypoglycemia in Patients who were using Flash Glucose Monitoring/CGM systems. The Data was so overwhelming that it supported widespread rollout to all T1Ds who wanted these systems over a number of years.
The new recommendations are also based on the Data starting to support the idea that T1Ds who have access to CGMs AND Pumps are much less likely to cost the NHS money through the development of complications that require treatment.
Add to this the falling cost of pumps (especially when you consider that the NHS is the largest single-entity purchaser of Medical Supplies/Pharma IN THE WORLD) and the development of AI and we will be at the point towards the end the 5yr plan (and based on the Flash/CGM Rollout) that every T1D will have access to HCL if they want it.
The NHS probably saw a sharp increase in the number of ambulance calls to treat low bg as well, right? People can't fight to reach a very good (low!) a1c and not experience some low bg. A pump that shuts off when the bg is going lower and increases the delivery of insulin when the bg is mounting keeps people from passing out from low bg. The number of interventions, then, has to have gone way down for those people with low A1C and a hyprid system that controls the delivery of insulin .
We have an advantage to get insulin Pump if you purchase it by your own money from neighbor country. We get minimed 780g after a month, once diagnosed. Then my son was 4 year old. But only issue is that we still made to order pump's accessories and consumables not in Azerbaijan. In this issue one Turkish citizen support us, he buy them then bring it us, when he comes to Azerbaijan, and we pay for consumables. Thanks to him for such humanitarian action. But it would be better if we get all consumables from minimed company directly in our country. That is only difficulty for us
As a UK T1 (52M) it's frustrating that I don't meet the criteria due to HbA1c of about 6.5%, but I do understand the reasons. Everything in the NHS is about clinical need, and I can absolutely see that children, pregnant people or diabetics with more difficulty achieving control have a higher need than I do. Before CGM became available I used to self-fund, which was expensive, and I'm considering the same for this but the costs seem to be even more expensive, it's likely that this will reach me eventually so funding is likely to only be for a few years.
I wouldn't increase my HbA1c to meet criteria, I doubt it would work as it would have to be for a long time as they would see my history, it's not going to just be based on one measurement. I am going to tell my Endocrinologist that I'm planning a baby at my next appointment, should give them a chuckle.
Thanks for coming on this Anne-Marie, Diabetes teams in the NHS have kept me alive now for 46 years since being diagnosed thanks to passionate professionals like you.
I’m originally from the UK and lost my airline career due to T1 diabetes. The UK has a fabulous healthcare system and after 30 years of experiencing the U.S. health care system it is absolutely horrendous. The cost of supplies even with insurance here in the U.S. is very expensive. It’s all about the drug companies revenue result and companies like Medtronic and Omnipod are off the charts expensive. For each pod on the Omnipod system is $70 for each pod. Rediculous a pod that I change every three days. I’ve been on the pump now 25 years starting with Minimed pump.
I am so lucky and grateful for me to have an insulin pump it has made such a difference to my blood sugars so thankyou to the NHS I will be forever grateful for this amazing opportunity ❤
The CGMs have made a real difference, also here in the UK. But what about the AID systems like Omnipod 5? People are on waiting lists for it, understandably. But what can we expect from it? I made a short video about a recent study showing that only 39% of adults on Omnipod 5 meet the 70% time in range target. ruclips.net/video/RBrytdfPuf0/видео.html
Of course, maybe that is a really good percentage, but why do so many people still not meet the standard, given some of the best technology?
I think that education plays a big role in this, including learning to carb count and understanding well how different foods affect glucose levels. Your channel of course plays a key role in helping to get people educated (and hopefully my channel and many of the other good channels out there as well).
I’m in the uk had type 1 53 years, I’m lucky with no complications apart from 1 lot of laser treatment 1990s and another lot 2008. I started on the Omnipod 5 February after using the Dash before hand for about 8 months definitely a game changer would never go back to mdi’s
I'm in Australia using Omnipod DASH and iAPS (DASH pods were only subsided last year, so 5 won't be available for years). The pods are subsidised through the NDSS and private health insurance. They cost around $30 each month, and are limited to 13 boxes for 12 months. My pod lasts 2 days (2.5 days at most) so I have to go 3-4 months back to pens, or pay $170 each month to continue.
I like our system and we are fortunate that medication costs are low but private insurance limiting the number of pods assuming that everyone will last the full 3 days is ridiculous. Patch pumps are the only type of pump that I am open to after my issues with Minimed years ago. Stopping iAPS for months and then starting again isn't going to be fun.
Great news but the waiting lists r shockingly bad. I’ve been waiting for 18 months for an insulin pump.
I'd chase your nurse, I made the decision in Feb having been on a DAFNE course, and got my pump a little over two months ago
@@DunFiddlin I did speak to my consultant a month ago but I was told there r a lot of ppl on the waiting list for a omnipod 5 so I will have to continue to wait. NHS SUCKS👍💯
I live in the UK and I've been using a pump since 2009. Since starting on an HCL system a year ago, I've had fantastic results. I think Type 1 HCL system users should set up a voluntary group either within their local area or nationwide, that could offer support to new users.
In Portugal we have healthcare system by government at least 2 year ago.
I am in 720G Medtronic and i am waiting for the 780G
Great interview Justin 👍🏼
I live in Louisiana and work for a great company. Most of my diabetes stuff is free if filled through the pharmacy. They consider it preventive care. I am a very lucky person. I feel blessed. The state I live in because I have blue cross, here it is way more expensive. My insulin pump went from my portion being $750 to $2900.00. That I'd my biggest cost every 4 years. If I liked omnipod, it would be free because it can be billed thru RX. I fill mine through DME so it's more because pur people in office are $ hungry.
Quick note, the guidelines only apply to England. Other countries in UK have different guidelines, I live in Scotland which has different guidelines. Hopefully Scotland will get similar access, though slightly wider criteria in Scotland, not same push to make HCL available in the same way as England at moment.
Can you speak to someone in Australia? Australia has had this for free for T1’s for years for people under the age of 21 for life..
Let's get a list of all countries with cost and access
In Finland price is 0 euros for pump, infusion sets and sensors, insulin is 4,5 euros per 3 months, so 1,5 euros per month. Your doctor prescribes you pump in the same way than they prescribe insulin.
The guarantee of the insulin pump is 4 years, after which you are updated to a new pump
Germany is nearly free... u have to pay max 20€ for ur insuline for 20 pens. Other stuff like pumps and cgm are free.
How is healthcare different in Ireland from the US and England? I was just curious cause I have friends with diabetes in Ireland.
Awesome interview and thanks for helping the diabetic community; 71 yo here from Canada, T2D HbA1c > 8%, will the insulin pump helpful? Please continue your great works.
I guess you are on insulin? Are you on MDI? Do you have a RTCGMS (real time continuous glucose monitoring system) or flash gms like Libre 2? The government plans only fund people with type 1 diabetes, i believe. Certainly that is true in Ontario. However, private plans will fund t2d's, I gather. Since a lot of people are mistakenly diagnosed with t2d when, in fact, they are t1d's, It's important to ask for testing to determine what type you are. In Ontario, I believe you have to pay for this testing for anti-bodies yourself.
Does AID coverage change as a person receiving it ages ?
No, children will still get supplies and support from a hospital clinic as they reach adulthood.
Here in HK is everything related to insulin pump and every consumables self funded. No any insurance available. Its really take it or leave it😰🥺
Ty Justin your awesome
Im in UK and I dont think its quite correct to put it that way, we get free healthcare when needed but when things need funding like pumps then they gotta prioritise the people that need it most. You can of course pay yourself but you have a choice at least. I got on CGM 2 years ago and I got on a pump over 20 years ago. The new guidelines opens up automated pumps to more people however they start off with children first. The NICE guidelines are not saying must be under 18 as I am 37 and my A1C is 6.2. So I am not sure what she saying is true for all hospitals.
Regarding doctor's not being familiar with the differences in the technology I am militant about patients not relying on the doctor for that! That causes helicopter doctors where the patient never takes ownership of THEIR disease. I got T1D at 13 in 1971. My parents never did anything for me because in the week I was in hospital, I was taught that. The same happened when I started using a pump and cgm. I learned it, I own it.
Still, how much faith do you have in a physician who doesn't understand the technology you are using? How much faith do you have in a CDE/RN pump trainer who hasn't got a clue? Or is down right obnoxious. They are not much good, are they, if they don't understand the pumps you are using? Why are you consulting them then?
Hi, i have questions. Last week someone diabetic fainted because of either low or high blood sugar. She didn’t have anything with her or on her. We didn’t know what to do, she did breath. We all just looked at her and didn’t know what to do. What should we do in a situation like that.
I wish the U.S. would do the same.
Iam diabetic person type e
Don’t think she is being correct.
Type 1 over 50 and I’m on the OM5 system a1c is very well managed
@Ba1ster It depends on what ICG you’re under. Some ICG’s are very pump focussed - like those in Central London - while others are less so. My area, North Herts, which is just north on London has a very long waiting list. Where in the country are you?
@@marcusjackson9978 isn’t that why NICE made it simple where u should be able to get one if u wanted on. Also the restrictions are simply not there wheee I live. I live in Leeds West Yorkshire
@@marcusjackson9978 West Yorkshire . Shouldn’t be the case though. If someone wants to go onto pump therapy she should be allowed to. The process is quite simple
sorry to say the UK nhs is a total joke, i am diabetic and I am having constant problem with just getting hold of insulin again from this post I have been locked out of getting my insulin
So glad we have the system we do in the US. I am a global employee and all those universal systems are horrible. All my friends that live in those areas need to purchase additional insurance
Biggest laugh of the day so far 😆
I live in the Netherlands and am very happy that everybody gets the same care. That's a social system. I have a GCM and everything is paid. I can choose mine own insurance (oblidged but I choose mine company).
@@keeszelluf Which CGMs are available? It seems that different countries have different CGMs in the standard package.
you need different friends. our UK NHS is imperfect but I've experienced the US system which is designed by and for the insurance industry. in the UK our NHS has been under attack from the last Conservative government. This will change.
@@ianwilliams395 not correct at all. I love our system. Couldn’t be better. Just need to use it correctly