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I'm T1D and currently working on something like this because diabetes healthcare in the UK is effectively non-existent past diagnosis. Managing the condition i

I'm T1D and currently working on something like this because diabetes healthcare in the UK is effectively non-existent past diagnosis. Managing the condition isn't too difficult after 30 years of it, but dealing with the politics of NHS diabetes care is astronomically more difficult than it was in any decade previously. In my experience, if you are not pregnant, or you aren't at risk of passing out in the next 15 minutes, they don't care. Whatever long term consequences you experience are another department's responsibility. A trend I've seen is that younger diabetes nurses and doctors are extremely dependant on tech (CGMs, insulin pumps), but don't comprehend how they work or what the data means. They don't know what patterns to look for beyond a 24hr window and generally seem to think everything is a bolus ratio or basal problem, overlooking other settings such as correction factor, duration, etc. Because they are tech illiterate, vendor lock-in is becoming an issue, as no health tech companies want you using another tool except the one they get paid for. So I find myself being swapped from platform to platform as they change my devices every year or so, each one being less workable than the last. Glooko only allows 6 months of historic data to be viewed, and only through their web UI. Abbot refused to let me download my data after I was forced off their platform to Glooko. I was happy on Tidepool, but it doesn't work with my current set of devices. No, more funding will not fix this. Threats of criminal punishments for lazy medical professionals and unlimited fines for anti-competitive behaviour from diabetes tech manufacturers will.

dbspin 2y ago
I feel your pain, but 'threats of criminal punishments for lazy medical professionals' isn't a great idea. There are already laws against medical malpractice, but it's pretty obvious why prosecuting doctors and nurses for 'laziness' would be incredibly counterproductive and result in a massive increase in bureaucratic ass covering rather than improved care. Ask yourself - what caused the NHS to get into this situation? Certainly reversing those causes would be a good first step to improving the service and fixing the issues they've caused. According to the doctors and nurses themselves, it's all about cost cutting, increases in hours and generally the financial starvation of the service. They're literally out there striking to be allowed to treat you better. https://news.sky.com/story/the-nhs-sold-out-its-staff-doctors-whose-lives-were-devastated-by-long-covid-to-sue-health-service-13055384 https://news.sky.com/story/the-nhs-sold-out-its-staff-doctor... https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-to-choose-between-patient-safety-and-careers/ https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-t... https://www.bbc.com/news/uk-england-birmingham-64938278 https://www.bbc.com/news/uk-england-birmingham-64938278
- noodleman 2y ago
  Those are junior doctors on dirt pay. Consultants earn up to £95k a year.
  - dbspin 2y ago
    You were specifically criticising "younger diabetes nurses and doctors". Bear in mind also - part of the reason trainees and nurses have such poor pay (and far more importantly, awful suicide inducing hours and conditions cross nationally), is a rigidly hierarchical system where consultants who were themselves overworked and underpaid themselves see this as a right of passage.
rhinoe 2y ago
This is a surprising view given that I'm T1D in the UK and the healthcare I've received, along with the tech, support and collaboration with diabetic consultants has been first class. You are making an assumption that every doctor is like the one you have (I guess), but its simply not the case. Good luck with your programming, but the agenda you're pushing for it is remarkably short-sighted.
- noodleman 2y ago
  I've had 4 consultants over the past 10 years. The first, who was forward thinking and kept up with the latest in the field, helped me acquire an insulin pump. Sadly, I had to transfer clinics when I moved across the country and have never had another consultant that helpful.
sgt101 2y ago
This is counter to my experience - my daughter has received fantastic care. We have regular time with the endocrinologist and get phoned up inbetween clinics. They have provided a closed loop system and all the backup we could have asked for. I agree about Glooko, it's not as good as diasend was.
- sgt101 2y ago
  What is it that Camaps + dexcom doesn't do that you want?
  - rubing 2y ago
    [dead]
- noodleman 2y ago
  This was my experience when I was first diagnosed, too (minus closed loop - it was the early 90's). They put more effort in with children, as it's a dedicated team. Same as gestational diabetes care. Expect to start having appointments cancelled and to go years without hearing from them once she is passed to the adult diabetes team.
mapt 2y ago
You guys are decades deep into an ideologically propelled plan to "Starve the beast" by denying the NHS funding so that care quality declines, and use that as justification to privatize the NHS entirely. The starting salary for a first-year doctor is below the national median income, and for a nurse significantly below. Their inability to requisition funds & time for care is something there is repeated labor action about. The NHS budget is 5.9% of GDP versus the 17.3% of GDP that the US economy spends on healthcare or the 11.3% of GDP that the UK economy spends on healthcare overall. Maybe more funding will fix it?
- GenerWork 2y ago
  Isn't one of the selling points of universal healthcare that it's overall cheaper in total cost than private insurance? If so, the UK should be celebrated for having such a low percentage of its GDP being spent on universal healthcare.
  - mapt 2y ago
    Why not reduce it to 1% and see what happens? It is possible for this class of approach to be cheaper, but also for this particular implementation to be spending too little.
  - s1artibartfast 2y ago
    UK spends about 11% of GDP on healthcare This is comparable to France, Germany, and Switzerland, which spend ~12%, and less than the USA at 16% of GDP. Things get a little more interesting when you take the overall GDP of each country into account: Switzerland: 106K, ~$12K per capita USA: 85k, ~$13.5k per capita Germany $54K, $6.8k per capita UK: $51k, $5.8k per capita France: $47k, $5.8k per capita https://data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS https://data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nominal)_per_capita https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nomi...
  - Spooky23 2y ago
    The issue is that the Britain is stagnating, so that percentage of GDP is growing slower than costs.
neves 2y ago
Are you receiving your tech for free from NHS?
petepete 2y ago
> Abbot refused to let me download my data after I was forced off their platform to Glooko So I've been using Abbot (LibreLink) since 2019 and if you log into LibreView (https://www.libreview.com/ https://www.libreview.com/) there's a 'Download glucose data' link in the top right of the screen. There's also a handy PDF report that I send to my diabetic nurse before my annual meeting, I think I'm the only one of her patients who knows how to do this because she's always thrilled and spends half the appointment going through it in amazement at the data/trends. Abbot have been quite good overall despite the fact I reported a bug to them in their Android app in 2022 and they still haven't fixed it. If you add LibreLink to the whitelist of apps that can interrupt DND, then enabled DND, LibreLink alerts you saying "Alarms unavailable."
dazc 2y ago
'...diabetes healthcare in the UK is effectively non-existent past diagnosis.' I was referred to a dedicated team with a specialist nurse who checks in with me regularly. Maybe I am fortunate not to live in a big city where most NHS facilities seem to have descended into third world standards?
virtualr 2y ago
I think it depends where in the UK you are, as I believe different areas healthcare is run differently. This has not been my experience, I've found the care to be good, as long as I'm willing to put in the work on my side and be proactive on occasion about looking for help. In my local area the diabetic team is stretched thinly (that's what the staff said to me themselves) and I am relatively proactive with reaching out, research and asking questions. With that said they really want me to succeed in keeping in a healthy range and have been a massive support as much as they can. Also the fact I don't have to pay for Insulin or my CGM is something I am really thankful for. Threats of criminal punishments for lazy medical professionals doesn't sound like a good fix to be honest.

dbspin 2y ago

I feel your pain, but 'threats of criminal punishments for lazy medical professionals' isn't a great idea. There are already laws against medical malpractice, but it's pretty obvious why prosecuting doctors and nurses for 'laziness' would be incredibly counterproductive and result in a massive increase in bureaucratic ass covering rather than improved care. Ask yourself - what caused the NHS to get into this situation? Certainly reversing those causes would be a good first step to improving the service and fixing the issues they've caused. According to the doctors and nurses themselves, it's all about cost cutting, increases in hours and generally the financial starvation of the service. They're literally out there striking to be allowed to treat you better. https://news.sky.com/story/the-nhs-sold-out-its-staff-doctors-whose-lives-were-devastated-by-long-covid-to-sue-health-service-13055384 https://news.sky.com/story/the-nhs-sold-out-its-staff-doctor... https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-to-choose-between-patient-safety-and-careers/ https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-t... https://www.bbc.com/news/uk-england-birmingham-64938278 https://www.bbc.com/news/uk-england-birmingham-64938278

noodleman 2y ago
Those are junior doctors on dirt pay. Consultants earn up to £95k a year.
- dbspin 2y ago
  You were specifically criticising "younger diabetes nurses and doctors". Bear in mind also - part of the reason trainees and nurses have such poor pay (and far more importantly, awful suicide inducing hours and conditions cross nationally), is a rigidly hierarchical system where consultants who were themselves overworked and underpaid themselves see this as a right of passage.

rhinoe 2y ago

This is a surprising view given that I'm T1D in the UK and the healthcare I've received, along with the tech, support and collaboration with diabetic consultants has been first class. You are making an assumption that every doctor is like the one you have (I guess), but its simply not the case. Good luck with your programming, but the agenda you're pushing for it is remarkably short-sighted.

noodleman 2y ago
I've had 4 consultants over the past 10 years. The first, who was forward thinking and kept up with the latest in the field, helped me acquire an insulin pump. Sadly, I had to transfer clinics when I moved across the country and have never had another consultant that helpful.

sgt101 2y ago

This is counter to my experience - my daughter has received fantastic care. We have regular time with the endocrinologist and get phoned up inbetween clinics. They have provided a closed loop system and all the backup we could have asked for. I agree about Glooko, it's not as good as diasend was.

sgt101 2y ago
What is it that Camaps + dexcom doesn't do that you want?
- rubing 2y ago
  [dead]
noodleman 2y ago
This was my experience when I was first diagnosed, too (minus closed loop - it was the early 90's). They put more effort in with children, as it's a dedicated team. Same as gestational diabetes care. Expect to start having appointments cancelled and to go years without hearing from them once she is passed to the adult diabetes team.

mapt 2y ago

You guys are decades deep into an ideologically propelled plan to "Starve the beast" by denying the NHS funding so that care quality declines, and use that as justification to privatize the NHS entirely. The starting salary for a first-year doctor is below the national median income, and for a nurse significantly below. Their inability to requisition funds & time for care is something there is repeated labor action about. The NHS budget is 5.9% of GDP versus the 17.3% of GDP that the US economy spends on healthcare or the 11.3% of GDP that the UK economy spends on healthcare overall. Maybe more funding will fix it?

GenerWork 2y ago
Isn't one of the selling points of universal healthcare that it's overall cheaper in total cost than private insurance? If so, the UK should be celebrated for having such a low percentage of its GDP being spent on universal healthcare.
- mapt 2y ago
  Why not reduce it to 1% and see what happens? It is possible for this class of approach to be cheaper, but also for this particular implementation to be spending too little.
- s1artibartfast 2y ago
  UK spends about 11% of GDP on healthcare This is comparable to France, Germany, and Switzerland, which spend ~12%, and less than the USA at 16% of GDP. Things get a little more interesting when you take the overall GDP of each country into account: Switzerland: 106K, ~$12K per capita USA: 85k, ~$13.5k per capita Germany $54K, $6.8k per capita UK: $51k, $5.8k per capita France: $47k, $5.8k per capita https://data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS https://data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nominal)_per_capita https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nomi...
- Spooky23 2y ago
  The issue is that the Britain is stagnating, so that percentage of GDP is growing slower than costs.

neves 2y ago

Are you receiving your tech for free from NHS?

petepete 2y ago

> Abbot refused to let me download my data after I was forced off their platform to Glooko So I've been using Abbot (LibreLink) since 2019 and if you log into LibreView (https://www.libreview.com/ https://www.libreview.com/) there's a 'Download glucose data' link in the top right of the screen. There's also a handy PDF report that I send to my diabetic nurse before my annual meeting, I think I'm the only one of her patients who knows how to do this because she's always thrilled and spends half the appointment going through it in amazement at the data/trends. Abbot have been quite good overall despite the fact I reported a bug to them in their Android app in 2022 and they still haven't fixed it. If you add LibreLink to the whitelist of apps that can interrupt DND, then enabled DND, LibreLink alerts you saying "Alarms unavailable."

dazc 2y ago

'...diabetes healthcare in the UK is effectively non-existent past diagnosis.' I was referred to a dedicated team with a specialist nurse who checks in with me regularly. Maybe I am fortunate not to live in a big city where most NHS facilities seem to have descended into third world standards?

virtualr 2y ago

I think it depends where in the UK you are, as I believe different areas healthcare is run differently. This has not been my experience, I've found the care to be good, as long as I'm willing to put in the work on my side and be proactive on occasion about looking for help. In my local area the diabetic team is stretched thinly (that's what the staff said to me themselves) and I am relatively proactive with reaching out, research and asking questions. With that said they really want me to succeed in keeping in a healthy range and have been a massive support as much as they can. Also the fact I don't have to pay for Insulin or my CGM is something I am really thankful for. Threats of criminal punishments for lazy medical professionals doesn't sound like a good fix to be honest.