Thinking about private diabetes care

Phoenix69

Member
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7
Type of diabetes
Type 1
Hello just wanted to know if anyone is receiving or has received private diabetes care for their type1. Experience and advice would be very much appreciated.
 

Brunneria

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21,889
Type of diabetes
Type 2
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Diet only
Hi @Phoenix69

Are you in the UK? Because private D care will vary tremendously across different parts of the world.
What particular type of healthcare were you thinking about? Insurance? Paying for individual appointments as you go? Particular treatments or ongoing checkups?
 

NoKindOfSusie

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427
Type of diabetes
Type 1
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Insulin
This is from a UK perspective.

My parents wanted me to go to a private place in London and I had one phone call with them on the subject and spoke to someone who had used their services. I never used their services myself so this is all things I have heard from others, not personal experience.

From what I have heard they will spend more time with you and are more willing to answer questions and generally treat you like a human being. I get the feeling that the NHS really just want to tick a box that they have put you on the approved treatment plan and they don't really seem to care whether you really understand why you're being told what you're being told. There was some hint that the nurses (not necessarily the doctors) are better in private practice because there is some hint that the NHS might just be pushing people through the training and some of them are a bit inexperienced, the people in private places will be more experienced. I have not personally been that impressed with the NHS people, they contradict one another and even sometimes themselves, visit to visit. That is something that we discussed specifically and is less likely in private places as they have what they're going to do all worked out. You can get appointments at more convenient times and places.

But at the end of the day it is very expensive and diabetes will still be a total life suck. If you have worked out how to do stuff week to week then it is not going to make it any less distracting or stressful or repetitive or horrible. You aren't suddenly going to be able to start eating chocolate.

If you don't have something like freestyle libre that is a much better use of money.
 

EllieM

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I've had both private and public care in the UK, Australia and now New Zealand.
I think I was private during childhood in the UK (went to see a private diabetes specialist but my parents paid so am not 100% sure). All I know is that my treatment improved dramatically when I went to Addenbrookes hospital in Cambridge as an adult student and they handed me my first glucometer (we'd like to get your hbA1C below 13) and suggested I could move to 4 injections a day basal/bolus regime. (Though to be fair, no one who was diagnosed this century can appreciate just how much difference it made to have a glucometer. and that's a timeline thing rather than the fault of my private specialist.) I then spent 15 years in London attending Hammersmith hospital - awesome awesome care via the public system and two healthy children. (Thank you NHS).
I spent 17 years in Australia seeing a private specialist which was so so, in retrospect I think I would have preferred public. In NZ for the last year I've been public and treatment has been great, better than Australia.

So, I'd tentatively agree that if you've got a decent public clinic near you you should use that, and save your money for cgm monitoring. If you hate your local clinic, or you're stuck with a poor GP, then go private.
 

therower

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3,922
Type of diabetes
Type 1
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Insulin
Remember that private care in the U.K.is delivered by doctors, specialists and nurses who either work for or who have previously worked and been trained within the NHS structure.
My daughter worked in theatres for awhile. Some patients would go private. Difference? Operation first thing on a Saturday morning and 3x hourly rate for my daughter.
Be careful what you actually pay for.
 

urbanracer

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5,186
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Not being able to eat as many chocolate digestives as I used to.
Remember that private care in the U.K.is delivered by doctors, specialists and nurses who either work for or who have previously worked and been trained within the NHS structure.
My daughter worked in theatres for awhile. Some patients would go private. Difference? Operation first thing on a Saturday morning and 3x hourly rate for my daughter.
Be careful what you actually pay for.

I agree with this comment but it's not always clear what you will be paying for.

My employer's insurance scheme payed for me to present myself to a cardiologist. Turned out to be the same specialist who'd seen my mother under the NHS a couple of years before.

Initial consultation was 45mins long and he spent a lot of time asking questions that he wouldn't have had time for on the NHS clock. But the outcome was an expensive angiogram procedure that proved there was nothing wrong!

To this day I can't help wondering if the angiogram was completely necessary or if he perfomed the procedure because it was a quick buck. Guess I'll never know the answer to that.

And since I was forced to switch from NHS dental care to private, my dentist (same guy) spends as much time talking about rugby and the weather as he does looking at my teeth. As an NHS patient I was in and out in a flash with barely so much as 'Hi how are you?'
 

Phoenix69

Member
Messages
7
Type of diabetes
Type 1
Hi @Phoenix69 - Intrigued to ask why private ? And what are you looking for specificially that will help ?
Hi and thank you for replying. I have over the last 5 years been let down by 2 GPs and my Endocrinologist. I am a type 1 (45 years) and have hypothyroidism (18 years) . The fact that I have told both symptoms that they have just wanted to attribute to something else. No proper questioning of me, physical examinations, blood tests are basic, a lack of time /knowledge or both have led to a lack of investigation and diagnosis. The consequences to both my physical and mental wellbeing have been terrible. The last straw for me was when I found out that biotin affects thyroid test results. When I finally got to speak to the endo I told her of the symptoms I am suffering from and until I said to her to forget my symptoms " Dr ... you are an endocrinologist ?" She replied yes of course I then said "so you know that biotin affects thyroid test results. " she would have continued to let me continue without further ado. Despite walking round with scalloped tongue, body temperature of 34 degrees and too many other hypothyroid symptoms to list in this post. I just want full comprehensive blood tests, non complacent professionals who actually look and investigate.
 
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jlarsson

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I think most of the problems people have with poor care or advice from doctors and nurses will be solved in the next few years by volunteer workers making software for your phones, pumps and the web. Once most/all people have CGM/FGM and we log what we eat and inject, the software will tell us what is going wrong, and why. You can already get recommendations for bolusing based on what you're about to eat and set up automatic adjustments for your pump during your sleep.
Beyond the initial stages after diagnosis and collecting blood and the like, soon enough there won't be much need for appointments at all unless there is a freak occurrence.
 
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I think most of the problems people have with poor care or advice from doctors and nurses will be solved in the next few years by volunteer workers making software for your phones, pumps and the web. Once most/all people have CGM/FGM and we log what we eat and inject, the software will tell us what is going wrong, and why. You can already get recommendations for bolusing based on what you're about to eat and set up automatic adjustments for your pump during your sleep.
Beyond the initial stages after diagnosis and collecting blood and the like, soon enough there won't be much need for appointments at all unless there is a freak occurrence.
Doesn’t relying on computers ignore a huge part of having diabetes: the mental strain of knowing you have a chronic disease.
I work in software and would not trust it to look after my life with out regular input or checking.
Any software requires updates. Improvements may require further education. Health scares require support.
I cannot see how this would remove the need for appointments.
 

jlarsson

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Doesn’t relying on computers ignore a huge part of having diabetes: the mental strain of knowing you have a chronic disease.
I work in software and would not trust it to look after my life with out regular input or checking.
Any software requires updates. Improvements may require further education. Health scares require support.
I cannot see how this would remove the need for appointments.
If anything, knowing how your body will be affected will reduce that mental strain, I think. Much like how those of us with Libre/Dexcom now feel like we have much better control than when having to do finger pricking for single results, getting automatic suggestions with improving accuracy over time is the logical next step in how we control it.
If you work in software, surely you would know that by networking(with consent, of course) your results(like you can do with diasend etc. now) you can get much better and accurate feedback over time, especially if comparable with other users, spotting patterns applicable to your particular body type or eating habits or whatever. Those updates and improvements you speak of would for the most part be on the server side and would go completely unnoticed by the client.
If let's for arguments sake diabetes.co.uk had this networked service with all of our data, all our blood sugar history, all our injections and all of what we've eaten, you can see that people who eat food x has their sugar affected this much, your body type is similar to theirs, why don't you try eating this. Same thing with basal analysis, how much you might want to bolus for this particular food and so on.
This is all very possible with what exists today, what we can't measure yet is illness and that time of the month and things like that.

I think this would reduce the need for most appointments.
 
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If you work in software, surely you would know that by networking(with consent, of course) your results(like you can do with diasend etc. now) you can get much better and accurate feedback over time
Working on software, I am very aware of the risks in sharing my personal information and how easy it is for it to be hacked.
For example, the information I share with diabetes.co.uk is limited (and not quite 100% accurate) in order to protect myself.

There is certainly a lot of value to be gained from combining software with our care but I think we have to agree to disagree with regard to it reducing the number of appointments.
 
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jlarsson

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Working on software, I am very aware of the risks in sharing my personal information and how easy it is for it to be hacked.
For example, the information I share with diabetes.co.uk is limited (and not quite 100% accurate) in order to protect myself.

There is certainly a lot of value to be gained from combining software with our care but I think we have to agree to disagree with regard to it reducing the number of appointments.
That's a legitimate concern that I fully understand but disagree with when it would directly make my health more manageable, and I wholly agree that one should not share more than needed, whether here or on social media in general, but that's a whole other discussion not relating to these forums.
Speaking for myself, my appointments with the exception of checking my feet almost entirely consists of things that could be covered by said technological advancements, therefore I believe it could significantly reduce the necessity of appointments.
 

EllsKBells

Well-Known Member
Messages
362
Type of diabetes
Type 1
Treatment type
Insulin
If anything, knowing how your body will be affected will reduce that mental strain, I think. Much like how those of us with Libre/Dexcom now feel like we have much better control than when having to do finger pricking for single results, getting automatic suggestions with improving accuracy over time is the logical next step in how we control it.
If you work in software, surely you would know that by networking(with consent, of course) your results(like you can do with diasend etc. now) you can get much better and accurate feedback over time, especially if comparable with other users, spotting patterns applicable to your particular body type or eating habits or whatever. Those updates and improvements you speak of would for the most part be on the server side and would go completely unnoticed by the client.
If let's for arguments sake diabetes.co.uk had this networked service with all of our data, all our blood sugar history, all our injections and all of what we've eaten, you can see that people who eat food x has their sugar affected this much, your body type is similar to theirs, why don't you try eating this. Same thing with basal analysis, how much you might want to bolus for this particular food and so on.
This is all very possible with what exists today, what we can't measure yet is illness and that time of the month and things like that.

I think this would reduce the need for most appointments.

The problem is, that assumes that diabetes is going to behave in the same way every time, and that people are the same, which they are not. It also relies on accuracy of reporting and of the equipment. I have a dexcom, and I would not in any way say it reduces the mental strain, not one bit. It just isn't as accurate as blood testing.

In terms of making changes, yes, I can make changes myself, but only because I have had the education, which not everybody has had access to, and I would still like input from HCPs, particularly in terms of making changes to basal, because we are quite literally talking about life and death if you get this wrong.

I also agree with @helensaramay - we are talking about a huge amount of data that realistically is not going to be kept totally secure.
 
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Phoenix69

Member
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7
Type of diabetes
Type 1
My concern is that if you have type 1 diabetes which is an autoimmune disease and part of the endocrine system not enough time has been put into either even. My GP still thinks I'm type 2 and calorie controlled. My hba1c goes between 6 and it hit 6.4 early this year. I told my go that I had then already been ill for 4 months and was worried about the high blood sugars I was constantly battling with 10 or more blood tests and numerous nsulin injections. She put it down to my hba1c. I was scared i would end up with pneumonia and sepsis again as 2 years ago. That wasn't the forest or last visit. I went to the surgery again my temperature was 35. I was very I'll at the time and simply sent away with antibiotics. No one contacted me despite the recurrent throat and gland infection the low body temperature. My low blood pressure.nothing. it seems everything is put down to depression or something else. Nobody investigated my physical condition to see if that had affected me.. I have lost so much it's like the medical profession accept you have diabetes and therefore you have depression. Tell them that you drink most evenings up to 2 glasses of wine they become totally blinkered. they can see from liver function triglycerides which mine are well within range etc that im not drinking large amounts. it may be more than recommended but not huge. im tired so tired only someone with thyroid disorder will understand.
 

jlarsson

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261
Type of diabetes
Type 1
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The problem is, that assumes that diabetes is going to behave in the same way every time, and that people are the same, which they are not. It also relies on accuracy of reporting and of the equipment. I have a dexcom, and I would not in any way say it reduces the mental strain, not one bit. It just isn't as accurate as blood testing.

In terms of making changes, yes, I can make changes myself, but only because I have had the education, which not everybody has had access to, and I would still like input from HCPs, particularly in terms of making changes to basal, because we are quite literally talking about life and death if you get this wrong.

I also agree with @helensaramay - we are talking about a huge amount of data that realistically is not going to be kept totally secure.
I feel like this whole debate is very similar to the Tesla and autonomous vehicles versus traditional cars, where I side with Tesla. Yes, the technology will not be 100% accurate, it will require changing, it will make mistakes. Similarly, you will not be 100% accurate with your finger pricking, carb counting or measuring your meals, your medical professionals will not always be correct or be up to date with all the information, and you will screw up sometimes.
Whether my personal health data is secure(as in theft) or not, I don't really care myself, in my native land it is already accessible by any medical professional that happens to be assigned to me, any pharmacist can view my entire list of prescriptions and who signed them, and so on. As addressed previously I understand this will not be accepted by many, but I would personally be fine with it. I can on the same token view my entire list of prescriptions here online, from anywhere in the world, with 2FA.
 

NoKindOfSusie

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Messages
427
Type of diabetes
Type 1
Treatment type
Insulin
I have a dexcom, and I would not in any way say it reduces the mental strain, not one bit.

No it doesn't. Libre made me more paranoid because it made it clear what a terrible job I had been doing and continue to do even now. The absolute worst part of it is screwing up, taking a correction, then spending the next forty five minutes checking and checking and checking. You have to watch it climb and climb, and then only after that long does it FINALLY start to level off and you can finally relax a bit. Only you can't because then it's nearly dinner time so we have to start getting set up for that and you just end up in an endless cycle of it not being quite right, trying to correct up or down and crashing into the next point where it should be something else.

Does that make sense to anyone.
 
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jlarsson

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No it doesn't. Libre made me more paranoid because it made it clear what a terrible job I had been doing and continue to do even now. The absolute worst part of it is screwing up, taking a correction, then spending the next forty five minutes checking and checking and checking. You have to watch it climb and climb, and then only after that long does it FINALLY start to level off and you can finally relax a bit. Only you can't because then it's nearly dinner time so we have to start getting set up for that and you just end up in an endless cycle of it not being quite right, trying to correct up or down and crashing into the next point where it should be something else.

Does that make sense to anyone.
And once you learn from the data you now have and adapt to it, all of a sudden you will feel quite alright. For the first 14 years as a diabetic, I did not have these tools and I had no idea why I always slept horribly or why I felt awful for a while during/after that particular meal etc, then I got the Libre and I could actually measure when and how much I should inject to a particular type of meal, I could see when my sugar rose and dropped during the night etc and could adjust accordingly. Libre has made my life a lot easier, and yes it can make you a bit obsessive at times but on the whole, it is a lot better and more manageable, and reduces stress.
 

NoKindOfSusie

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427
Type of diabetes
Type 1
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Insulin
And once you learn from the data you now have and adapt to it, all of a sudden you will feel quite alright.
I would love to know how.

You correct something and you watch it climb and you assume on trust that it will eventually stop climbing. But sometimes it doesn't, because there are one billion things to take into account and you missed one of them. So you have to watch, and by the time you realise the correction wasn't enough, you are already too high. So you watch it go too high, thinking, do I take more now or do I wait? Do I wait a bit longer? How about now? Another ten minutes? Another five? One more minute?

You're gambling with your own health, at least three or four times a day, and each time it happens takes a couple of hours so you're basically ALWAYS in this situation, every waking second. If I ever get used to that and feel "quite alright" about it then I will really have gone crazy.
 

DCUKMod

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Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
My concern is that if you have type 1 diabetes which is an autoimmune disease and part of the endocrine system not enough time has been put into either even. My GP still thinks I'm type 2 and calorie controlled. My hba1c goes between 6 and it hit 6.4 early this year. I told my go that I had then already been ill for 4 months and was worried about the high blood sugars I was constantly battling with 10 or more blood tests and numerous nsulin injections. She put it down to my hba1c. I was scared i would end up with pneumonia and sepsis again as 2 years ago. That wasn't the forest or last visit. I went to the surgery again my temperature was 35. I was very I'll at the time and simply sent away with antibiotics. No one contacted me despite the recurrent throat and gland infection the low body temperature. My low blood pressure.nothing. it seems everything is put down to depression or something else. Nobody investigated my physical condition to see if that had affected me.. I have lost so much it's like the medical profession accept you have diabetes and therefore you have depression. Tell them that you drink most evenings up to 2 glasses of wine they become totally blinkered. they can see from liver function triglycerides which mine are well within range etc that im not drinking large amounts. it may be more than recommended but not huge. im tired so tired only someone with thyroid disorder will understand.

It sounds to me like your greatest concerns are around your thyroid and the symptoms you are experiencing. Have you actually been diagnosed with hypothyroidism, or are you very symptomatic, but unable to get a diagnosis?

Hypothyroidism is a very tricky thing to pin down sometimes, although the diagnostic thresholds in the UK (and much of Europe) are significantly higher than in the US or other countries.

If my reading of you is correct, then reading, or posting on the Thyroid UK boards at Health Unlocked: https://healthunlocked.com/thyroiduk A bit like here, they have very, very knowledgeable people who understand the condition and live with it from day to day.

I have had temperature regulation issues for over two years now, so do empathise with your frustrations.

I have seen Endos in both the public and private sectors, and in fact the private Endo, whilst very fascinated in my symptoms, referred me onto a Rheumatologist who decreed very quickly that my condition isn't anything in her field.

If you see an Endo privately, he may well request the tests he requests are done by the NHS. I ended up having tests for about 30 conditions - some of which wrere very scary, but I got a clean bill of health.

I am currently trialling Levothyroxine to see if it eases my symptoms. It's "interesting".