Comply or patients view??

[donnellysdogs]

On a funded cgm the stipulation is to "comply" with their rules and to do things in accordance with hosputal advice?

After 30+ years as T1 I think I know how long insulin lasts in me and the wffects certain changes will have.

Ie I was on 6 tresiba at night with insulatard in mornings.

Hosputal agreed I go back to just tresiba but wanted me on 6 units (the same as when taking insulatard as well). I wanted 9 units. No, not agreed. So I went back last weekend to just tresiba but spliit the difference to 7.5 units of just tresiba. As thought, even on 7.5 units it was far too low dose and high and corrections all week.

As I have a funded cgm (need to comply) can I ask what others woukd have done in my situ?

Given nurse dose at 6?
Split difference at 7.5
Or own at 9 units?

Today I did change to 9.5 without discussing next increase of dose.

I was on tresiba directly before the insulatard was added and just wanted to go back to that dose which proved ok but still had some flaws due to various reasons. The consuktant suggested insulatard added in to stop rises and to get me safely thru an operation and fasting etc.

Would others have complied or due you think the hosputal should have listened to patient more?

 

[therower]

Hi @donnellysdogs . 30+ yrs in my opinion makes you an expert. No one knows or understands diabetes like a diabetic.
Definitely feel hospital should utilise your knowledge and work with and alongside you.

 

[Kristin251]

Hi @donnellysdogs
I would not comply with something that keeps my bs high or low.
As said you know your doses. I would perhaps call them and inform them what's going on and how you plan to make adjustments. You should not have to compromise your glucose levels. This info will also help them with others as it shows you need both and or a higher dose of just one.
I'm not generally considered a conformist haha. Especially when it comes to diabetes. We know our bodies better than anyone else.

Wishing you well!

 

[Snapsy]

I would be a little creative in my interpretation of 'comply with hospital advice'.

I am extremely happy to comply with the wish of my diabetes centre for me to manage my diabetes in a safe, comfortable and effective manner.

So I do.

But I would hesitate to comply with specific dosing instructions that I suspect are not appropriate. So I would not have complied in the example above. And I would have gone it alone, while carrying out regular testing to make sure I was safe in light of the medication tweak. Which frankly is what I do anyway - as do you.

And yes, I do think they should have listened to you more. You're your own expert, and in my opinion it's very shortsighted of them not to take note of that.

Hope all's well.

 

[donnellysdogs]

Hi @donnellysdogs
I would not comply with something that keeps my bs high or low.
As said you know your doses. I would perhaps call them and inform them what's going on and how you plan to make adjustments. You should not have to compromise your glucose levels. This info will also help them with others as it shows you need both and or a higher dose of just one.
I'm not generally considered a conformist haha. Especially when it comes to diabetes. We know our bodies better than anyone else.

Wishing you well!

Dont have to call them..they can log in anytime of day to see my cgm data....

I have to enter every injection etc for my own records (brain like a sieve) so I had to type in what dosage to take.
The email they sent (they dont talk on phone) clearly stated 6 units and not my dosage.

I been lucky to get funding for further 6 months so didnt feel comfortable mainly because they didnt listen to me in first place or my reasoning.

 

[GrantGam]

There's no denying that your condition is very demanding and quite complex @donnellysdogs.

I guess it depends on why you got CGM funding in the first place. Was the funding granted to make your quality of life better and to help YOU improve your BG management. Or, because you need help from your Dr's to sort out some issues and a CGM is the best means for them to figure out what's wrong?

As you can see from the above, it's a bit of a double edged sword... If I had issues out of my control and needed professional input to remedy them, I'd be taking a back seat because clearly my prior efforts were all exhausted. On the other hand, if it was a means to let ME get a better picture of what's happening - then I would be making the changes as and when I saw fit, and only seek input from my health care team when and if I needed it.

 

[donnellysdogs]

Cgm funded because of "other comorbidities"

Its because the pump was my saviour and when my body started to reject cannulas from supplying insulin its been so difficult to cope with getting regimes that can get levels better and this is so critical around operations that I've had and am going to have.
Plus my eating too is limited.

Just struggled really when the Insulatard was added as additional to tresiba and also bolus in morn. It took 8 weeks and a struggle to request to go back to just tresiba with corrections. Then to be told just go on the same tresiba dose for a week without the added insulatard... well even a blindman would know that was going to make things even worse for me with highs.

Just frustrated but wonder whether its just me as patients views to me have been totally rejected and making me beg to take insulatard out of the dosing has left me feeling like pants.

Had appt and the stand in consultant wouldnt even make a decision regarding insulatard. Said to discuss with the educator who wasnt there.. who had ignored requests in emails and finally my proper consultant got back to my request after 8 weeks of asking to say I could stop it.

Gggggrrrrrr. Frustrated.

 

[librarising]

On a funded cgm the stipulation is to "comply" with their rules and to do things in accordance with hosputal advice?

After 30+ years as T1 I think I know how long insulin lasts in me and the wffects certain changes will have.

Ie I was on 6 tresiba at night with insulatard in mornings.

Hosputal agreed I go back to just tresiba but wanted me on 6 units (the same as when taking insulatard as well). I wanted 9 units. No, not agreed. So I went back last weekend to just tresiba but spliit the difference to 7.5 units of just tresiba. As thought, even on 7.5 units it was far too low dose and high and corrections all week.

As I have a funded cgm (need to comply) can I ask what others woukd have done in my situ?

Given nurse dose at 6?
Split difference at 7.5
Or own at 9 units?

Today I did change to 9.5 without discussing next increase of dose.

I was on tresiba directly before the insulatard was added and just wanted to go back to that dose which proved ok but still had some flaws due to various reasons. The consuktant suggested insulatard added in to stop rises and to get me safely thru an operation and fasting etc.

Would others have complied or due you think the hosputal should have listened to patient more?

Fletch's twopennyworth on the matter, especially from 1.50 in

Geoff

 

[donnellysdogs]

Fletch's twopennyworth on the matter, especially from 1.50 in

Geoff

Thank you so much!! That really puts perspective back in place! And with a laugh too.
Think "dont let the b*****s grind you down" is my most relevant up for today and to keep that lodged in one brain cell!!

Thank you so much Geoff for cheering up my Sunday!!

 

[col101]

There's an old civil service saying "it's easier to seek forgiveness than permission" good luck, it's your life and your health at the end of the day.

 

[donnellysdogs]

There's an old civil service saying "it's easier to seek forgiveness than permission" good luck, it's your life and your health at the end of the day.

Made me laugh.

At one point I thought... do I take 7.5 and just type in 6?? And then confess!! Decided I couldnt do that just had to type in the 6 as they wanted...

 

[tim2000s]

You can always quote Partha Kar (the head of Diabetes in the NHS) back at them - he always says that diabetes care professionals are specialists, not experts. Those living with the condition are the experts.

I think I'd have gone with @Snapsy's approach and simply told them that compliance means managing my diabetes safely, and as I'm the expert and you're the specialist, I'd rather take my own approach - and we can look at the evidence in the CGM graphs afterwards.

 

[donnellysdogs]

You can always quote Partha Kar (the head of Diabetes in the NHS) back at them - he always says that diabetes care professionals are specialists, not experts. Those living with the condition are the experts.

I think I'd have gone with @Snapsy's approach and simply told them that compliance means managing my diabetes safely, and as I'm the expert and you're the specialist, I'd rather take my own approach - and we can look at the evidence in the CGM graphs afterwards.

Brilliant.... thnx!! Frustration lifting

 

[BrianTheElder]

The word "comply" caught my attention...
I also have sleep apnoea. When I first started, I was given a CPAP breathing mask to take away and I have used it ever since. After the first year, DVLA wrote to me and asked for confirmation from the hospital that I had been using the mask.
Since then, the attitude has changed and "compliance" has crept in. There is now a dialogue between the hospital and DVLA, which I am not involved in, reporting on my usage. If I am not compliant, then my licence will be taken away. At my 6-monthly reviews, I am no longer told what benefit I am getting from the mask, but congratulated on my compliance.
The same journey from helpful support to enforced compliance now seems to be happening with diabetes.
I am not an opponent of the nanny state, but it would be nice to be kept in the picture rather than have insidious changes.