Untruthful & Hurtful Hospital Letters

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I’ve always been told that 53 or under is excellent control. I know it’s individual, but maybe the target is 48 knowing that most Type 1s will be a bit above that?

@Inka I think you are correct. This is from one of my lab reports (Note: I am a T2)

 

[AleGna68]

I got a phone call from the GP practice early. They have got the discharge letter from rehab and wish to discuss it. I will see what they have to say first before any letters or complaints.

Take an advocate with you to appointments, my hubs comes with me to ensure I get all the information as I’m apt to forgetting some and also HE can ask questions I have not thought about or forgotten.

 

[Lucyr]

Take an advocate with you to appointments, my hubs comes with me to ensure I get all the information as I’m apt to forgetting some and also HE can ask questions I have not thought about or forgotten.

Not everyone has anyone to advocate for them. I can’t think of anyone I could take to appointments to help when my autism means I don’t understand things. A friend has advocated for me on the phone by calling the diabetes department to explain some problems with their communication but he isn’t local and works so can’t just come to all my appointments.

 

[trophywench]

I wasn't used to anyone coming with me to my medical appts @Lucyr so to 'suddenly' have a new husband who was willing and able to do so, especially as I've got older and more a) forgetful and b) intolerant of idiots, has been helpful to say the least! I've been able to do the same for him.

Fraid his hearing isn't as keen as it once was, which all that know him acknowledge so the only person that doesn't, is him ........

 

[AleGna68]

Not everyone has anyone to advocate for them. I can’t think of anyone I could take to appointments to help when my autism means I don’t understand things. A friend has advocated for me on the phone by calling the diabetes department to explain some problems with their communication but he isn’t local and works so can’t just come to all my appointments.

I wasn't used to anyone coming with me to my medical appts @Lucyr so to 'suddenly' have a new husband who was willing and able to do so, especially as I've got older and more a) forgetful and b) intolerant of idiots, has been helpful to say the least! I've been able to do the same for him.

Fraid his hearing isn't as keen as it once was, which all that know him acknowledge so the only person that doesn't, is him ........

But does he hear what the medics are saying?

 

[AleGna68]

Not everyone has anyone to advocate for them. I can’t think of anyone I could take to appointments to help when my autism means I don’t understand things. A friend has advocated for me on the phone by calling the diabetes department to explain some problems with their communication but he isn’t local and works so can’t just come to all my appointments.

Do you belong to any autism groups?

 

[AleGna68]

That might be your opinion but diabetes uk website uses the word high to describe anything above the target of 48, and the AI overview also says well controlled is under 48 (know that AI can be ropey sometimes but I’ve given multiple links evidencing that well controlled is under 48)

I’m not criticising anyone here, my own a1c is above that, I’m simply saying that “poorly controlled” and “well controlled” are just terms describing your a1c relative to the target and not personal judgments

This I feel is generalised, there are those who the number for them is as controlled as they can be and it can be mentally disabling to tell them they are not can have a negative effect on their mental health.

 

[Lucyr]

This I feel is generalised, there are those who the number for them is as controlled as they can be and it can be mentally disabling to tell them they are not can have a negative effect on their mental health.

I don’t understand what your comment means. If you want me to understand / respond to this you’d need to explain it differently

Do you belong to any autism groups?

Yes I run one of the only autism groups I’ve ever come across that’s run entirely by autistic volunteers.

 

[AleGna68]

I don’t understand what your comment means. If you want me to understand / respond to this you’d need to explain it differently


Yes I run one of the only autism groups I’ve ever come across that’s run entirely by autistic volunteers.

I and others understand what the NICE guidelines are with regarding to considered levels but someone who struggles to get anywhere near those low levels may able to only do the best that their body accepts for them. To keep being told your uncontrolled when they are doing their best is counter productive to their mental health, they may be having a real struggle to do any better, so hearing the criticism could have a detrimental effect.

For instance, I’d been away on couple weeks holidays where it was nigh on impossible to eat out Low Carb which is what I need. It had been suggested to me by my son that I ask for what I need, ie: exchange of the carb item for vegetables, sounds simple as they say. Yes, right……… meal comes without the exchanges, barely enough to eat OR they’ve completely ignored my request and I have the carbs.
The majority of restaurants, cafes etc supply a lot of cheap carb meals like chips and burgers etc.

SO, I had blood tests for diabetic review……… to find not my regular nurse and the exchanged nurse berating me for being uncontrolled diabetic which she’s marked my records, not taking into account that it was an abnormal event and actually I AM as controlled as I can get without making life miserable.
How did I feel? Terrible, upset defeated etc…… And to add insult to injury, my notes have been prećed to show the absolute minimum, no explanation and it appears permanent.

I’d written a letter explaining the situation and had a reply by my dr however, there was a difference of opinion with a receptionist when I realised the nurse I should have had, had been exchanged without consulting me which added to this debacle and resulted in me being accused of being rude, which I was not.

 

[Lucyr]

To keep being told your uncontrolled when they are doing their best is counter productive to their mental health, they may be having a real struggle to do any better, so hearing the criticism could have a detrimental effect.

I specifically said I wasn’t judging them or their control, but that it is simply a factual statement that a hba1c above a certain level is poor control

For instance, I’d been away on couple weeks holidays where it was nigh on impossible to eat out Low Carb which is what I need.

I don’t understand the relevance of this to hba1c. Two weeks doesn’t make a high hba1c, you’d have to have poor control longer than that

 

[Robin]

I specifically said I wasn’t judging them or their control, but that it is simply a factual statement that a hba1c above a certain level is poor control


I don’t understand the relevance of this to hba1c. Two weeks doesn’t make a high hba1c, you’d have to have poor control longer than that

I’ve given this some thought. The description 'poorly controlled' means, not meeting the target, but why isn’t the person with diabetes meeting the target? This could be as much to do with the treatment given, as with the patient's response. I was misdiagnosed with Type 2, because of my age, and the ignorance of my GP about when people could develop Type 1. My diabetes was ‘poorly controlled' for the first year, but not by me! I was doing my utmost with the ineffective Type 2 drugs I was prescribed.
The problem comes when the phrase 'poorly controlled' is weaponised by officious HCPs to berate the patient and imply that it’s all their own fault, whereas they are doing their utmost with the inadequate tools provided .

 

[trophywench]

Main major mistake by anybody is believing diabetes itself can be controlled. At the very best - it can be managed.

It can therefore be well managed or not so well managed.

 

[MikeyBikey]

I am so shocked Mikey. I agree with Barbara that the inconsistent and irregular treatment and poor dressing changes have made a major impact towards the eventual amputation.
The NHS staff responsible for your care in hospital took away your autonomy to manage your diabetes and insulin injections.
Have you spoken to the consultant who normally oversees your diabetes reviews? I am sure his/her records will reflect the reality.
In your situation I would seriously consider a formal complaint about the whole sorry saga.😡😡

This would have scared the nurses and had them running for the glucose!

 

[everydayupsanddowns]

Right on the edge @MikeyBikey

 

[silver minion]

This would have scared the nurses and had them running for the glucose!

View attachment 36593

I am not type 1 but I would be happy with that CGM reading. It looks better than the spikes and troughs you endured in hospital. How are you getting on with the antibiotics now ?

 

[Lucyr]

This would have scared the nurses and had them running for the glucose!

View attachment 36593

Interested to know why you have the alarm set so high if you let it sit below for hours? Why not either treat it, or reset the alarm to a lower level if happy sitting lower so that you’re alerted should your bg drop into hypo territory

 

[everydayupsanddowns]

Interested to know why you have the alarm set so high if you let it sit below for hours? Why not either treat it, or reset the alarm to a lower level if happy sitting lower so that you’re alerted should your bg drop into hypo territory

I have mine set similarly high, and for me it’s a question of direction and rate of change.

With the sensor lag (which is about 8-10 mins on the Simpleras I use) if my BG is dropping it’s quite possible for me to get notified for sensor glucose of 4.8-5.0 while my actual glucose might be 4.1 or thereabouts.

I’ve recently added an extra alert so I have ‘alert before’ and ‘alert on’ for my low value. Which means I get earlier warnings in the 5s that I can review and see if I want to act.

If I’m cruising at 4.8 that’s fine. But if I’m dropping at 4.8 I’m quite possibly already borderline low.

 

[Lucyr]

If I’m cruising at 4.8 that’s fine. But if I’m dropping at 4.8 I’m quite possibly already borderline low.

What I mean though is that if I was cruising at 4.8 and happy with it I would change the alarm to 4.0 or 4.2 or something, so that I’d know if it starts dropping. I’d change it back up to the higher level once I was above that and wanted to be alerted at a higher point again.

Mikey won’t get alerted if bg drops as the alarm is set higher than the flat bgs.

 

[Natalie123]

What I mean though is that if I was cruising at 4.8 and happy with it I would change the alarm to 4.0 or 4.2 or something, so that I’d know if it starts dropping. I’d change it back up to the higher level once I was above that and wanted to be alerted at a higher point again.

Mikey won’t get alerted if bg drops as the alarm is set higher than the flat bgs.

I have two low alarms - one at 5 like @MikeyBikey and @everydayupsanddowns which is my "low alarm" and one at 3.9 which is my "urgent low alarm".

If my low alarm goes off at 5, I would just check how quickly it's dropping. If it's dropping quickly then I will do a finger pick and either treat as hypo or, if the finger prick is ok I will have a few grapes to prevent a hypo. If it's relatively stable and I know I am sitting around and it's likely to stay constant then I will leave it running below 5 and just keep an eye on it since there's nothing wrong with it being between 4 and 5. My low alarm might go off several times a day but I rarely need to treat a real hypo now that I've got this early warning alarm.

I don't know if this is an option for all libre users or if it's because I use my libre 3s with my pump in HCL.

 

[Lucyr]

I have two low alarms - one at 5 like @MikeyBikey and @everydayupsanddowns which is my "low alarm" and one at 3.9 which is my "urgent low alarm"

You can’t have two low alarms on libre, that’s why I was pointing out the Mikey might want to consider changing the alarm based on bg in scenarios like the screenshot shown.

Alarms aren’t something you set once and never change, they’re something you change through the day whenever you need to. Eg before bed you might be in a habit of widening them so that you aren’t woken unnecessarily, before exercise you might increase it for earlier warning, when flat around the alarm level you’d put it down, just done a whacking big correction you’d put it as high as it goes.

If you just set your libre alarm and never change it you’re probably not getting the most from it.