Rant Alert - NHS Guidance

[Ali H]

How can you hang your hat on A1C results and a single daily reading? I care for both of my parents and the diabetes nurse has just swung by to do reviews. How can readings in the early to mid teens night after night be acceptable to anybody? I get my parents are old, I get they have other health problems, but frankly a whole ton of those are as a result of never having good blood sugar control. Neuropathy, retinopathy, vascular issues etc but I get no back up on levels whatsoever.

I saw the childhood complications headlines on the news yesterday morning, is it any wonder, seriously, is it any wonder at all?

Rant over. Just going to go and scream somewhere loudly for an hour or two.......

Ali

 

[Ali H]

Thanks, I'll just go try that....... aaaaaaaaarrrrrrgggghhhhhhhhhhhhh

Ali

 

[anna29]

Thanks, I'll just go try that....... aaaaaaaaarrrrrrgggghhhhhhhhhhhhh

Ali

Does it work ? @Ali H

 

[Ali H]

Nope!

Ali

 

[anna29]

Nope!

Ali

Didn't think it would

 

[Lou73]

My blood sugars are regularly around 14 when I go to bed. My diabetic nurse is happy with this because at least I won't hypo! I spoke to a GP recently as my sugars are constantly high - mainly due to a combination of the steroids I take and being in pain - but I got no help at all. So can understand how you feel.

 

[Kat100]

Hi Ali ...no answers from me , just saying I am thinking of you ....rant away x

 

[Ali H]

Lou 73, for your own sanity and health, ask to be referred to somebody who does care and can help you. It isn't funny, that is way too high and potentially damaging and they should be helping you. What is it with this bloody ridiculous hypo mantra that is trotted out every time???? My parents and you are a million miles away from a hypo. Mum's pre tea reading tonight, 11.3, oh funny that because that is the mmol figure her A1C equates to as a daily average. That is 7 mmol above hypo territory. I am not asking that they gain the control I currently have, but I do feel that we need to regularly be seeing numbers below 10 and that that is not an unrealistic thing to aim for. Oh but more insulin = more weight gain. Not if they do their jobs as healthcare professionals and explain the effect of carbs. My parents laugh in my face when I discuss it, but until somebody in authority reinforces it I might as well pee in the wind. I am seriously considering marketing the house and placing them into a home and calling it a day tonight. I am totally fed up, demoralised and feel we are in the wilderness when it comes to their care. The carers don't turn up, the district nurses don't turn up and now the diabetes nurse has decided a pat on the arm and a smile will suffice. Why should I keep hitting this brick wall, day in, day out? Have you ever sat and watched your parents die, day by day, afflicted by retinopathy, neuropathy, vascular disease etc etc etc a lot of which is brought on by or exacerbated by out of control levels? Thought not and quite clearly she hasn't........

Ali

 

[donnellysdogs]

@Ali H - I don't know how old your parents are but I would hesitate a guess at over 65. It just seems the older the diabetic person is the less attention is paid to keeping control of levels by the NHS.

I despair. I've already been told by my consultant that my control and levels will be relaxed in later life.....why? We all deserve good healthcare...it just seems to me that older persons are totally fobbed off.

 

[Lmm19]

@Ali H, Hi, I too know what you're going through. My mother in law is 79 and has Dementia and Diabetes, She has carers and DN. Her BG is only checked once a day at 9am, by which time her levels are not too bad. When I'm there, during the day, I test her BG and it's often 17 mmol +. Told the DN who wasn't concerned at all!

 

[donnellysdogs]

@Ali H, Hi, I too know what you're going through. My mother in law is 79 and has Dementia and Diabetes, She has carers and DN. Her BG is only checked once a day at 9am, by which time her levels are not too bad. When I'm there, during the day, I test her BG and it's often 17 mmol +. Told the DN who wasn't concerned at all!

That's what I've been told to expect when older..... Dread the thought of it.

 

[Ali H]

Insane isn't it, at what point does somebody decide control doesn't matter and why should they be allowed to make that choice? They are very old, 90 and 81, I don't expect or want miracles but I do want single figure readings, that's all.

Ali

 

[Ali H]

So do they tell people with COPD whose sats fall lower than standard not to worry and they don't need more oxygen, just because they are old? Or asthmatics not to bother using their peak flow meters and preventative inhalers because they are over the hill? Course they don't so why should diabetes be any different?

Ali

 

[donnellysdogs]

Insane isn't it, at what point does somebody decide control doesn't matter and why should they be allowed to make that choice? They are very old, 90 and 81, I don't expect or want miracles but I do want single figure readings, that's all.

Ali

And you should be able to request that elderly persons are treated with dignity and respect, which, actually covers the need to keep levels at recommended targets... Otherwise it is age discrimination.

 

[Jaylee]

I feel your pain Ali.

Like the time I was phoned at work one morning by my mum sensing something was wrong with my T2 dad of 84.
My mum had put the visiting nurse on the phone to inform me matter of factly that my dads BS level was 3.4...!! Lol & I was supposed to accept this as OK..? I don't like to tell these professionals how to suck eggs. But I felt I had to pull T1 rank over this nurses complacency...

They don't care where your at when the bus pass hits the doormat.

They do seem to like the elderly running in the teens though...

@Dibbles1 . Screaming under a railway arch..?? Wasn't that Hazel oConnor film "Breaking glass"? Great idea though... Good movie too!

 

[LucySW]

Oh dear, Ali. What you describe is absolutely terrible. And I suspect it's not unusual. Jesus. God help us all.

Do what you can. Best of luck to your poor parents.

 

[LucySW]

@Ali H - I don't know how old your parents are but I would hesitate a guess at over 65. It just seems the older the diabetic person is the less attention is paid to keeping control of levels by the NHS.

I despair. I've already been told by my consultant that my control and levels will be relaxed in later life.....why? We all deserve good healthcare...it just seems to me that older persons are totally fobbed off.

Let's just try to keep our marbles intact and stay out of hospitals/nursing homes. I would NEVER knowingly accept such treatment. The old are not for throwing into the dustbin.

 

[Ali H]

From the readings I have seen so far my thoughts are that maybe she needs an insulin mix, as soon as she eats she is high high high all through the day but her morning reading was a respectable 5 something. Given her A1C it was quite obvious there must be some lower readings going on in order to offset the highs, otherwise her A1C would have been even higher. I had to laugh at my Dad's reaction, I was at work when they did the reading but when I got home he proclaimed "he nearly fell off the chair" upon discovering it was in the 5s. In his mind you should be all but dead at 5, they don't realise that when you drop in most cases it happens pretty slowly and over many hours. He would stuff his face on 5 and be 15 plus within an hour in sheer panic. Anyway, we should have a good 4 weeks of readings by the end of this to be able to establish some concrete trends. I think the gliclazide is not doing much for her now as well.

Ali

 

[forty six]

I can understand exactly where you are coming from, my dad died in August 2010. He was fed - quite literally - the NHS mantra of carb, carb, carb since he was diagnosed in 1996. All it did for him was to increase his weight and sugar levels to the point where insulin was needed. The end result was renal failure and ultimately the inability to expel carbon dioxide from his body, this was also made worse by the worst thing we can do to the elderly; over medication or poly pharmacy.

I do know however, that although it may look like a hypo is unlikely with a sugar level in the teens at bedtime, if you suffer from 'brittle diabetes' like one of my friends it is perfectly possible to go from 15 or 16 at 10pm to 2.3 at 2am.

I am treating my diabetes as my own personal experiment (after all the NHS are) not following any advice trotted out by a GP, DN or anyone from NICE. I am making my own mind up whilst I am still allowed to have one.

 

[catherinecherub]

@AliH,

I came across a good paper from an unbiased site with regard to treating older diabetics and it suggests the targets that should be aimed for including those for patients with co-morbidities.

http://www.uptodate.com/contents/treatment-of-type-2-diabetes-mellitus-in-the-older-patient?source=search_result&search=diabetes&selectedTitle=7~150