• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Dispute with diabetes team

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

Misty4321

New Member
Relationship to Diabetes
Type 1
I've had diabetes for nearly 25 years and have been driving for 6 1/2 years. I changed insulin several months ago and have since had issues with hypos. My diabetes team wanted me to carb count, which has never worked for me. I was fitted with a CGM for a week (hottest week of the year!) and had a lot of hypos (as I suspect many people did that week), after which I was advised not to drive. At this point I stopped carb counting and my results have very much improved. Was told last week they just wanted a few 3am tests and then they would OK me again, so I did them. I did them for a full week - the first couple were hypo, which I have absolutely no doubt was solely because of stress - the results are not matched by the week before or after. This morning I have been told I am still not allowed to drive and that they want to fit me with a CGM for another week before letting me back behind the wheel. My results, save for those 2 night lows, have been excellent over the last week (no hypos and no major highs) and I don't want another CGM (I hated it and it confirmed to me I do not want a pump), but I'm not sure that I can refuse it and still be allowed back behind the wheel. I don't understand why my very regular (5x day+) testing is not enough for them. I have no issues whatsoever with hypo awareness or with disabling hypos. Would quite like to be discharged back to my GP and discuss this with him based on my results, but is a GP really going to override a consultant who has said I'm not allowed to drive prior to a CGM week. I feel bullied and have completely lost faith in the diabetes team, particularly the consultant, given that my control has been better on my own than when I have taken their advice. Can I be forced to have a CGM again? I know medically I can't be, but am I completely at their mercy when it comes to driving?
 
Hmm, that's a tricky one. The DVLA rules state hypo awareness and not needing help as the two main criteria. But I think there is a 'catch all' bit that says 'or if your doctor has advised you not to drive' So, if you fill in the DVLA form showing that you meet the criteria, and they check up with your consultant, he is likely to tell them you're not fit to drive.
Sometimes it's a question of just gritting your teeth and jumping through the hoops, rather than trying to get a sensible decision from anyone.
 
I might go and discuss it with my GP as I'm so hacked off with the consultant (who I don't actually get to speak to, instead I get piecemeal information passed through the diabetes nurse). If I do a few weeks or a month worth of tests without a hypo surely they can't keep on advising me not to drive unless I have a CGM. Its really not a hoop I want to jump through - and lets face it, it would be in my interest to run high (don't worry, I don't mean ridiculously so) for the week I had it on, so that there is absolutely no possibility of dropping anywhere near 5. I fail to see how that will help either me or them!
 
Misty4321 said:
and lets face it, it would be in my interest to run high (don't worry, I don't mean ridiculously so) for the week I had it on, so that there is absolutely no possibility of dropping anywhere near 5. I fail to see how that will help either me or them!
Click to expand...
Quite. I wonder if the messages relayed to you from the consultant have been mangled by the nurse in transit. Might be worth asking to speak to him in person, or enlist your GP's help to do so.
 
To be honest I think the problem is with him, not with the nurses (who I've always found much more helpful). He's made recommendations for me to change particular doses which make absolutely no sense when compared with my test results. I told the nurse I wouldn't make the changes, giving reasons why and she previously agreed with me (and my results have improved!). Beginning to wonder if I'm being punished for rubbing him up the wrong way!
 
@Misty4321 - It's a tricky one, when I view this from the viewpoint of both yourself and from the Hospital's. May I ask firstly though, exactly what it is that stresses you when you're wearing the CGM? Is it uncomfortable, that you feel "Big Brother" is watching you and that you don't get a minute to yourself, or something else? I'm not an insulin user, so can't speak from any experience on that point, but I do use the Libre, on a part-time basis. I must say I love having all that information at my fingertips, but do appreciate not everyone feels that way.

I listen to everything you are saying, but when I look at it from the Hospital's view, I maybe see, to an extent, how it could be argued they are doing the best for you.

The thing is, 5 tests a day simply doesn't give the whole picture. A finger prick test is what your meter reads from the single blob of blood applied to the strip, at that moment. It's like a dotted line. Anything could be happening in between, and especially if you have swift moving blood scores. Clearly, by it's very nature, a CGM "fills in all the gaps" between the finger prick tests. It could be argued your Consultant is being very thorough, given the changes to your treatment and management - both in terms of your medication and their desire for you to carb count, as well as the hypos you have been experiencing.

If I'm completely honest, if I were your GP and you came to see me explaining you would like to revert to my care, and for me to sign you off to drive, I would likely be unwilling to take you back, until at least the driving scenario were resolved. Clearly the hospital has much more information than your GP, and indeed, by virtue of the specialism at the hospital, likely great experience in dealing with trickier T1.

Much as I would be devastated not to be driving, I do think I would urge you to try to work with your Consultant, who, let's face it. is the guy to sign the papers, to reach a better place and a mutually acceptable regime and numbers. The longer the conflict goes on, the more stressed you are likely to become (and for most folks, stress isn't helpful to stable/unstable bloods, and provided the Consultant genuinely feels he is right not to sign you off to drive, the more entrenched he is likely to become. Instead of a win/win scenario that sounds like a no-win/no-win situation. If you could bear it, would a longer period on the CGM help you accept it all better? With the CGM you wore, did you have access, on a real time basis, to the data it was storing, or did you have no feedback until you went back to the hospital?

I have no idea why your insulin was changed, but again, I am assuming it was an attempt to help you achieve improved control with a view to the longer term outcomes.

Of course, another option would be to change clinics, and Consultants, but if you do that whilst not allowed to drive, I can't imagine your new team deciding you can drive whilst they get to know you and work out the best way forward. They would have to consider the safety of yourself, and other road users. If anything went wrong, it could be catastrophic for all concerned.

I do think you're in a bit of a hole.
 
Thanks for your response, which must have taken quite a while to write 🙂 It is like 'Big Brother' with the CGM. I just found it uncomfortable wearing the thing and I have big lively dogs, so anything I wear at waist level tends to get knocked a lot and makes me very self conscious/worried. If I was getting constructive advice after it, I'd say fair enough, but the advice I've been given by the consultant makes no sense and I've been given no answers to the issues I've raised with it (thus losing faith in the consultant)

My other concern is that if I do all the things he says and then have the CGM, my blood sugars are liable to be through the roof - am I then going to be told I can't drive because my diabetes isn't under control, even though the DVLA technically has no upper limit? If this is the case, I wonder if I should just save myself the hassle - and it is a hassle getting to clinic, particularly on such a regular basis, without a car - there's no one local I can get lifts from and live in a rural area so very limited public transport.

The insulin change was because I was on the old Humulin I and S and considering pregnancy, so they thought my control would be better with Humalog and Levemir.

Little amounts of stress make my sugars rise, big amounts make them plunge. Over the years I've gotten very good at reading myself so I can pre-empt it without major issue (which is why carb counting really doesn't work for me as it doesn't let me account for this!) I do appreciate that finger pricks don't give the whole picture, but my night to morning bloods are showing a fairly consistent rise of around 2.3. Other than stress, there was no reason for them to suddenly plunge 4 units on the two nights I was asked to test. (Stress because I was worrying about what my levels would be - vicious circle!

Its less about a new team determining that I can drive, and more about working with people who I have faith that they actually know what they're doing. I can (and will have to) live with giving up driving for a while, but I feel like I'm not getting appropriate help at the same time. Frankly, the CGM requirement feels like blackmail and unreasonable given my test results since I stopped carb counting.

The CGM was just a report back to the hospital, no real time info. Have seriously considered Libre, mostly because I could do arm level sensor a lot easier than waist level with the dogs, but was put off by people's reviews with big discrepancies to finger pricks (I know there's a delay, but it looked to be more of an issue with just that), big discrepancies between different sensors and issues with the sensors malfunctioning and the maker's being very disinclined to issue replacements. If I was paying that much, I'd be hacked off about that! I was so disappointed as thought it looked absolutely wonderful.
 
Misty4321 said:
Have seriously considered Libre, mostly because I could do arm level sensor a lot easier than waist level with the dogs, but was put off by people's reviews with big discrepancies to finger pricks (I know there's a delay, but it looked to be more of an issue with just that), big discrepancies between different sensors and issues with the sensors malfunctioning and the maker's being very disinclined to issue replacements. If I was paying that much, I'd be hacked off about that! I was so disappointed as thought it looked absolutely wonderful.
Click to expand...
I have also been slightly put off by the problems i have read about, but I suspect problems get reported much more than good experiences, so the picture coming through is probably skewed. I've certainly heard some very good experiences with it and may give it a go 🙂

I hope you can get the driving problem resolved 🙂
 
Misty4321 said:
Thanks for your response, which must have taken quite a while to write 🙂 It is like 'Big Brother' with the CGM. I just found it uncomfortable wearing the thing and I have big lively dogs, so anything I wear at waist level tends to get knocked a lot and makes me very self conscious/worried. If I was getting constructive advice after it, I'd say fair enough, but the advice I've been given by the consultant makes no sense and I've been given no answers to the issues I've raised with it (thus losing faith in the consultant)

My other concern is that if I do all the things he says and then have the CGM, my blood sugars are liable to be through the roof - am I then going to be told I can't drive because my diabetes isn't under control, even though the DVLA technically has no upper limit? If this is the case, I wonder if I should just save myself the hassle - and it is a hassle getting to clinic, particularly on such a regular basis, without a car - there's no one local I can get lifts from and live in a rural area so very limited public transport.

The insulin change was because I was on the old Humulin I and S and considering pregnancy, so they thought my control would be better with Humalog and Levemir.

Little amounts of stress make my sugars rise, big amounts make them plunge. Over the years I've gotten very good at reading myself so I can pre-empt it without major issue (which is why carb counting really doesn't work for me as it doesn't let me account for this!) I do appreciate that finger pricks don't give the whole picture, but my night to morning bloods are showing a fairly consistent rise of around 2.3. Other than stress, there was no reason for them to suddenly plunge 4 units on the two nights I was asked to test. (Stress because I was worrying about what my levels would be - vicious circle!

Its less about a new team determining that I can drive, and more about working with people who I have faith that they actually know what they're doing. I can (and will have to) live with giving up driving for a while, but I feel like I'm not getting appropriate help at the same time. Frankly, the CGM requirement feels like blackmail and unreasonable given my test results since I stopped carb counting.

The CGM was just a report back to the hospital, no real time info. Have seriously considered Libre, mostly because I could do arm level sensor a lot easier than waist level with the dogs, but was put off by people's reviews with big discrepancies to finger pricks (I know there's a delay, but it looked to be more of an issue with just that), big discrepancies between different sensors and issues with the sensors malfunctioning and the maker's being very disinclined to issue replacements. If I was paying that much, I'd be hacked off about that! I was so disappointed as thought it looked absolutely wonderful.
Click to expand...

I don't know when you are next due to see your diabetes team, but, would it be worth thinking about how you manage that appointment to achieve steps forward to your best outcome?

I'll be completely honest here and state right up front that my experience with my brand of diabetes has been a walk in the park, by comparison with the nightmares others have experienced. I've had a couple of very frustrating appointments with HCPs who have been not just wedded, but welded to the old style "Eat lots of carbs and go low fat" way of managing. Being a scientist, with medical training (not practising any more) that just didn't make common sense, so I invested some time in reading, learning, testing and reviewing (as a deflection to my desire to tear the nurse "advising" me limb from limb) because I quickly realised my future is in my own hands.

Now, not all of that relates to you and your T1, with insulin etc to juggle. I guess I'm trying to say I understand a bit, but I can never understand your position completely.

I think it could be very wise of you to recognise it may take a little while to start driving again. I know I would hate that too. However that level of acceptance may allow you the time and space to work out a way forward that suits best.

Would you consider using the next appointment to tell the nurse to go through your concerns and frustrations, a bit as you did in your initial post? If you prepare notes with all your rationale noted by each point, it could help you have a constructive meeting. I know if I went into a meeting like that, without notes, I'd end up with a brain freeze, and end up just getting emotional. Whilst emotion is fine, it's not always the way to bring someone on-side. I honestly believe your Consultant will be trying to do the best fr everyone.

I have read on various fora of individuals trialling the Libre, under the support of their diabetes team. In other worrds, they are given a sensor (or two), and a reader to use. If they like it, thereafter funding it is up to the individual. Maybe you could ask about that?

The Libre isn't yet approved by the DVLA for meter readings, so the Libre objective would be to get your levels into a more consistent place, but you would still probably need to be testing in parallel, if you wanted that time period to count towards getting your license back.

For other CGMs; I thought (though no experience of any!) they could be worn on various sites, not just the one. Could you consider asking if the sensor could be sited in another place, like an upper arm, perhaps? I have to say, wearing the first Libre sensor was a bit like wearing a new pair of shoes. I sort of knew it was there, but after a very short while, I couldn't feel it at all. Maybe your discomfiture was as much about the imposition than the sensor itself?

I would sincerely urge you not to stop attending your appointments. Doing that would make you doubly unlikely to be driving again, any time soon.

I know I'm not necessarily writing what you want to hear, but I think these are things you have to think through, which isn't the easiest thing when you just want to have a decent scream and tear some probably perfectly nice person limb from limb.
 
Thank you, again, for this. I too came to the conclusion that my future was in my hands, which led to me slipping out of the diabetes clinic system for 7 years (I did have a couple of hba1cs by the GP during that time and my control, both on this basis and an individual test basis, was pretty good for a type 1 (7s) - I put in a lot of effort!) That time feels like absolute bliss compared to the situation now and has made me very disinclined to ever seek support again instead of dealing with issues myself once this is resolved, which quite frankly is a bit sad!

I've written a very long and constructive email to the diabetes nurse this morning (as I'm much better with writing than with words), mostly requesting (a lot of) clarification in relation to the information she gave me yesterday (which was really insufficient), but also stating that I am not happy with her refusal to answer, or to pass on to the consultant for him to answer, my queries in relation to his proposed changes, as I don't think this represents an acceptable level of patient care (and is what is infuriating me more than anything else). My next arranged appointment is mid-December, so its really not preferable to wait until then, even if I'm not looking at driving for the next year. Hopefully she will get back to me and answer my questions instead of palming me off, which is what I felt she did yesterday.

The discomfort with the CGM was more from repeated knocking by my mad pack of dogs and my worrying that the thing was going to get torn off by a stray paw and/or broken (they're friendly, just too friendly!) It confirmed to me that I really didn't want to risk an expensive pump.

I know Libre isn't recognised for driving (and I doubt very much that it ever will be, given that other forms of CGM aren't) it just seemed like a very clever bit of kit. My usual diabetes nurse (not the one I spoke with yesterday!) did offer me a kit and a sensor if I wanted to give it a go. It clearly worked for you, so maybe I will give it a try - the reviews have been so variable, it's made me wary. I wonder if its possibly better for Type 2s rather than 1s...
 
Misty4321 said:
know Libre isn't recognised for driving (and I doubt very much that it ever will be, given that other forms of CGM aren't) it just seemed like a very clever bit of kit. My usual diabetes nurse (not the one I spoke with yesterday!) did offer me a kit and a sensor if I wanted to give it a go. It clearly worked for you, so maybe I will give it a try - the reviews have been so variable, it's made me wary. I wonder if its possibly better for Type 2s rather than 1s...
Click to expand...
As has been said, people having problems with the Libre are probably more likely to flag it up. I've been using one on and off for a year,( about 8 sensors). I've not had a problem with one coming off early, I've not had a problem with strange readings ( it does tend to be a bit lower than my meter at low levels, and a bit higher at the upper end, but how reliable are meters? They are allowed a 10% margin for error) The Libre obviously doesn't work for everyone, but all I can say is, it seems to be working for me. I put a sensor on and leave it 24 hours before activating, as it does tend to wobble a bit for the first 24 hours, and after that, I rely on it totally, apart from testing for driving, when my meter almost always spot on with it. I also think that people on here who have had problems have said that, having been taken through a series of questions by customer service, there's not been a problem with them replacing a genuinely failed sensor.
 
Hi Misty. If you're not happy with the reply to your email. I suggest you contact your Consultants secretary.
 
Misty4321 said:
Thank you, again, for this. I too came to the conclusion that my future was in my hands, which led to me slipping out of the diabetes clinic system for 7 years (I did have a couple of hba1cs by the GP during that time and my control, both on this basis and an individual test basis, was pretty good for a type 1 (7s) - I put in a lot of effort!) That time feels like absolute bliss compared to the situation now and has made me very disinclined to ever seek support again instead of dealing with issues myself once this is resolved, which quite frankly is a bit sad!

I've written a very long and constructive email to the diabetes nurse this morning (as I'm much better with writing than with words), mostly requesting (a lot of) clarification in relation to the information she gave me yesterday (which was really insufficient), but also stating that I am not happy with her refusal to answer, or to pass on to the consultant for him to answer, my queries in relation to his proposed changes, as I don't think this represents an acceptable level of patient care (and is what is infuriating me more than anything else). My next arranged appointment is mid-December, so its really not preferable to wait until then, even if I'm not looking at driving for the next year. Hopefully she will get back to me and answer my questions instead of palming me off, which is what I felt she did yesterday.

The discomfort with the CGM was more from repeated knocking by my mad pack of dogs and my worrying that the thing was going to get torn off by a stray paw and/or broken (they're friendly, just too friendly!) It confirmed to me that I really didn't want to risk an expensive pump.

I know Libre isn't recognised for driving (and I doubt very much that it ever will be, given that other forms of CGM aren't) it just seemed like a very clever bit of kit. My usual diabetes nurse (not the one I spoke with yesterday!) did offer me a kit and a sensor if I wanted to give it a go. It clearly worked for you, so maybe I will give it a try - the reviews have been so variable, it's made me wary. I wonder if its possibly better for Type 2s rather than 1s...
Click to expand...

I agree mid-December is too long to let this fester in your mind. Might I suggest you keep your email in drafts, until you have slept on it and read it afresh? It's so easy to read what we think we've written, rather than the words or tone of the page, when we re-read immediately. It's unlikely too much would happen, in terms of feedback on a Friday. Most folks are concerned about sweeping up all the "must do by Friday evening" jobs. So, Monday or Tuesday might be a better day to send? Do try to take quite a lot of emotion out of the mail you write, and when you talk about what happened, it's important you talk about how you felt about things. Saying something like, "You ignored everything I asked you" could be viewed as confrontational, whereas something like, "It seemed to me you weren't hearing what I was asking you. This made me feel devalued/unimportant/stupid or whatever" is more a suggestive and less confrontational.

In terms of how she reads your mail. Her response to the first; "You ignored everything I asked you", could easily be, "I did not", whereas her response to the second, "It seemed to me you weren't hearing what I was asking you. This made me feel devalued/unimportant/stupid or whatever" could be, "I'm sorry you felt that way. I was listening, but unable to help in the way you wanted", or whatever. If you state a fact, she can deny that, if you make a suggestion, she can tell you that wasn't her intention, but she can never, ever tell you you didn't feel x,y, or z. She's not in your head.

I think you're probably about trying to build bridges and move forward, and I applaud you for that.

One thing I will say is; you mentioned a few posts ago that you and your partner/husband are heading towards having a baby. Clearly it is pretty important your numbers are good in preparation for a pregnancy, and from reading, it seems like both self management and support from your diabetes team are very important during a pregnancy, and through the early days with your baby. So, please do try to find a way to work with this team, or think about moving clinics. My only words on that is the grass isn't always greener in another field, and in terms of trying to get to the bottom of things, it seems your Consultant is trying to do the right thing.

If you can try the Libre, at no cost, I'd urge you to give it a go. What do you have to lose? I'm a well controlled T2, and still I learned a bunch of stuff from the Libre. That said, I'm a bit of a data monster, so I can confidently say, I love all those numbers.

You do seem to be in a different place this morning, by comparison to last night, and I applaud you for that. Really, really good luck with it all.
 
Thanks all - email already sent, but as I said, its constructive anyway. I'm used to writing legal correspondence so taking out emotion really isn't an issue, albeit that I haven't necessarily shown that on here! Also got my husband to check it to make sure it wasn't too confrontational. I'm not expecting a response today, but hopefully within the next week, otherwise I'll chase.
 
Sounds like you have it all in hand. 🙂
 
I'm late to this thread, @Misty4231 , so much has already been covered. However, for legal type issues, both to get advice yourself, but also so you let the charity know about current issues affecting people with diabetes, I reckon it's worth calling Diabetes UK Helpline. I'm sorry that this information will probably reach you too late to act before the weekeend, as phonelines close 7pm Friday. Contact details at https://www.diabetes.org.uk/helpline
 
We have been using the Libre continually since early February and find it pretty good. We have only had two sensor failures: one because my daughter knocked it off, so not the sensor's fault, and one that just didn't go in right and failed right from the start. We received a free replacement for that one.

In terms of the accuracy, yes it does tend to read low at the bottom of the range and high at the top , but if you know this you can work with it. And if blood sugars are changing rapidly then there's a definite lag, but as far as I understood it, ALL CGMs have this problem as they are reading interstitial fluid, not blood. If you compared two blood test meters (or even the same one twice with the same drop of blood) you would be extremely unlikely to get the same answer twice either. Basically no system is perfect! So if you think the Libre might work better for you than a different CGM please give it a try, in terms of plotting your general BG movements it's pretty good. One of the DSNs at our clinic even said they are finding the Libre more accurate!

Good luck, I hope you can get everything sorted! 🙂
 
Misty4321 said:
The discomfort with the CGM was more from repeated knocking by my mad pack of dogs and my worrying that the thing was going to get torn off by a stray paw and/or broken (they're friendly, just too friendly!) It confirmed to me that I really didn't want to risk an expensive pump
Click to expand...

Personally I would sort out the issue with your dogs as a top priority. All four feet belong on the ground no matter what size the dog is. It isn't difficult to teach them this either. 🙂
 
Misty4321 said:
I've had diabetes for nearly 25 years and have been driving for 6 1/2 years. I changed insulin several months ago and have since had issues with hypos. My diabetes team wanted me to carb count, which has never worked for me. I was fitted with a CGM for a week (hottest week of the year!) and had a lot of hypos (as I suspect many people did that week), after which I was advised not to drive. At this point I stopped carb counting and my results have very much improved. Was told last week they just wanted a few 3am tests and then they would OK me again, so I did them. I did them for a full week - the first couple were hypo, which I have absolutely no doubt was solely because of stress - the results are not matched by the week before or after. This morning I have been told I am still not allowed to drive and that they want to fit me with a CGM for another week before letting me back behind the wheel. My results, save for those 2 night lows, have been excellent over the last week (no hypos and no major highs) and I don't want another CGM (I hated it and it confirmed to me I do not want a pump), but I'm not sure that I can refuse it and still be allowed back behind the wheel. I don't understand why my very regular (5x day+) testing is not enough for them. I have no issues whatsoever with hypo awareness or with disabling hypos. Would quite like to be discharged back to my GP and discuss this with him based on my results, but is a GP really going to override a consultant who has said I'm not allowed to drive prior to a CGM week. I feel bullied and have completely lost faith in the diabetes team, particularly the consultant, given that my control has been better on my own than when I have taken their advice. Can I be forced to have a CGM again? I know medically I can't be, but am I completely at their mercy when it comes to driving?
Click to expand...
25yrs & you can not carb count ? I find that hard to take in. I would learn if I where you. o_O
 
Like Copepod, I am late into this discussion. Misty, you are between a rock and a hard place. The consultant won't sign you off as fit to drive without a further week of CGM. So you can't drive.

The GP cannot override this decision, because he/she is obliged to inform the DVLA about any consultant care that you have, and if the consultant has passed this information to the GP, then he is obliged to inform the DVLA. So you still can't drive.

You feel confident that you are fit to drive, but the only way you will convince the consultant of that is by a further week of CGM.

I can understand why you feel bullied, but if you withdraw from consultant care, then you are left with that final decision. You are not fit to drive, because that is the decision of the consultant.

It doesn't matter what you think of the care you are receiving, or indeed how many emails you send. If you don't have that further week of CGM, you will remain off the road. What have you got to hide?

And if you do drive in the knowledge of this advice, you will be driving without insurance.

And finally, changing consultants won't help, because your hospital records will follow you.

The choice is yours, though in reality, if you want to drive, you don't have one.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top