Support in diffferent areas

[Colin Crowhurst]

I have been fortunate ( i think!) in my area (Norfolk UK) of getting excellent advice which has worked for me.

However a relative in another health authority (Merton and Sutton UK) is getting what looks to me to be rubbish advice; what are other people opinions of the best way to challenge this?

His HbA1C score two years ago was 97 and does not appear to be improving. So its not a question of waiting to see if its working for him in my humble opinion now.

Opinions from within this health area GREATLY appreciated

He is under the normal GP/DSN rather than a specialist clinic!

 

[Antje77]

He is under the normal GP/DSN rather than a specialist clinic!

I assume he has T2, unlike yourself, because you posted in the T2 forum?
If he has T2, I'd urge him to read up about the condition (like on this forum), and use a meter before and after meals.

T2 care is often not the best, as many posts on the forum prove. But there is a lot people can do themselves, if they are motivated to do so!
Here's JoKalsbeek piece on T2, he might find it very useful: https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html

 

[AndBreathe]

I have been fortunate ( i think!) in my area (Norfolk UK) of getting excellent advice which has worked for me.

However a relative in another health authority (Merton and Sutton UK) is getting what looks to me to be rubbish advice; what are other people opinions of the best way to challenge this?

His HbA1C score two years ago was 97 and does not appear to be improving. So its not a question of waiting to see if its working for him in my humble opinion now.

Opinions from within this health area GREATLY appreciated

He is under the normal GP/DSN rather than a specialist clinic!

To be honest, the care and treatment for T2s tends to be very different indeed from that offered to T1s.

Most T2s are cared for under their GP. Medical education in effective management of T2 is, in my view, grossly deficient. To be honest, there are some who do well in that environment, but for most, the advice to base meals around healthy carbs isn't overly helpful - especially in the absence of testing, to assess the impact of food and drink on their blood sugars.

For many - I hesitate, despite temptation to say most - T2s who do well or very well do so because they have taken control of their situation and done their own research.

To be honest, if your relative's A1c is running as high as you allude, then that's not great news. To be honest, I would suggest your relative does their own research, or join a forum, very much like this one.

If his A1c has been running that high for some time, it could be advantageous to bring it down steadily. Too rapid a decrease can leak to eye problems, which are usually transient, but alarming and demotivational if they occur.

Should you need it, or feel you would like to read it, this link is the NICE Guidelines for T2 management: https://www.nice.org.uk/guidance/ng28

 

[Colin Crowhurst]

Thanks for the above, agree and concer with most of the points however the person is NOT capable of using internet hence why i am stepping in.

Having been told by the community nurse this morning that "he only needs to test himself once per day" nearly made me explode with rage..... escpecially as the one they wanted we pre-breakfast so is likely to be when they are at there lowest possible reading; my suspicion is that this figure is being used to indicate the person is "well controlled" when clearly following some extra testing that i did with them this was NOT the case.

I do have a question for others on a bolus/basal regime; he is currently being given a huge bolus (60 units) and only one Basal ( post? breakfast of 6 units)
My limited knowledge of this regimen suggests that there should be a basal with each meal? this would to my logic indicate that during the day his figures would not continue to rise throughout the day? Comments please.

 

[Antje77]

I do have a question for others on a bolus/basal regime; he is currently being given a huge bolus (60 units) and only one Basal ( post? breakfast of 6 units)
My limited knowledge of this regimen suggests that there should be a basal with each meal? this would to my logic indicate that during the day his figures would not continue to rise throughout the day? Comments please.

Basal is the one you only take once a day, regardless of food (or sometimes twice, depending on brand).
Bolus is the one you take with meals.

What are the names of the insulins he's on, and does he take insulin with other meals than his breakfast?

 

[Colin Crowhurst]

Tougeo (60u) novo rapid (6u) obviously i reversed them by error!

NO other meals get insulin other than breakfast!

 

[Colin Crowhurst]

Dont get me started on testing; the "nurse" that attended today to give him his insulin thought once a day testing is ok????????

When i went to collect a full prescription of testing strips today for him (nearly run out!) they allocated one pot of 50 for 28 days....... That conversation to come tomorrow with the DSN is likely to get messy me thinks!

 

[eventhorizon]

Even with only testing once or twice a day you can build a picture if you vary the times of day you test.

 

[Paul_]

That conversation to come tomorrow with the DSN is likely to get messy me thinks!

I can't add any advice around medication management, or strategies to use in conjunction with that medication, it's way out of my league and experience level.

However, I live in an area where the advice and care has been less than stellar since my diagnosis 4 months ago. My local surgery tried every trick in the book to swerve any responsibility for offering advice after I was diagnosed. You sound like you're fired up, which is good, because the one piece of advice I can offer is to be unrelenting when it comes to pushing for the care your relative deserves. If they're resistant to offering constructive advice, don't be fobbed off, don't allow them to ignore you, and unapologetically make a pain in the a** out of yourself. Sometimes it's the only way unfortunately.

 

[Colin Crowhurst]

Yes I am fired up, have not been happy with their advice for some time now. What i really need to know (prefereably from either an experienced campaigner or a "whistle-blower) is HOW we challenge the system rather than keep shooting down the poor pawns at the sharp end?

The "dietician" i spoke with 9 months ago in his area certainly wont be talking to me again.......
His doctor is my first target, i just pity the really nice and efficient receptionist who really did do her best to get things moving today.

Anyone know of any decent lawsuits that have already been tried so that i can examine details to copy or improve a medical negligance approach?

 

[EllieM]

Hi @Colin Crowhurst can I ask how long your relative has been T2 and how long on insulin?

Some T2s do get started just on a basal dose so I am wondering if the bolus at breakfast is just to cover the dawn phenomena???

And while I 100% agree about the lack of testing, could it be that your relative is very elderly? I think as people age doctors are much more concerned about hypos than hypers than when people are younger. Just one fall from a hypo can be deadly for someone in their 80s with brittle bones. They go into hospital with a break and never come out again. (Happened to my mil though I don't think her fall was caused by a hypo).

 

[Colin Crowhurst]

Diagnosed after 5 years; treatment has been bad throughout and has led to two BTK amputations! Old yes, but not elderly!

 

[Angela64]

Dont get me started on testing; the "nurse" that attended today to give him his insulin thought once a day testing is ok????????

When i went to collect a full prescription of testing strips today for him (nearly run out!) they allocated one pot of 50 for 28 days....... That conversation to come tomorrow with the DSN is likely to get messy me thinks!

I’m in Berkshire, I was told I was testing too much, x2 a day!! My HbA1c was 134! I was ‘lucky’ to be carted off to hospital and they had me in a drip, injections I think, gave me a monitor and strips, but if they hadn’t I bet I’d have nothing.
My husband researched the US sites for information

 

[bitofagit]

It occurs to me that the best advice for someone 'new' to the condition is to listen to those with the actual experience of dealing with it.

I am full of admiration and gratitude for those that have offered their advice on this forum, convinced that had I not come across this when diagnosed, I would not have achieved an improved condition such as I have.
The advice is here from those that live with it, and it would be a shame to ignore all that first hand evidential stuff.