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Professional ignorance

IanD

IanD

Well-Known Member
Messages
2,429
Location
Peterchurch, Hereford
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Carbohydrates
My posting last January:
Ebenezer said:
My friend Sarah has been diabetic-2 for many years. She went totally blind with glaucoma about 10 years ago, so cannot manage insulin or a BS meter.

A year ago her HbA1c was about 9, so they started her on insulin - 6 units Glargine administered by the district nurse each morning. They measure her BS at that time, normally at 15-20. Over the year the Glargine has been increased to 14 units.

Seems odd to me that as Glargine starts to act an hour after injection, & lasts for about 20 hours, they are not in fact measuring the effect of insulin as it is spent, & hasn't started acting.

I see her on Sunday afternoons, & measure the BS several hours after lunch at around 20 when proper control would give a reading of 10. The nurses have objected to me writing results in their book & contacting the diabetic specialists at the hospital. Most recent readings: before a church meal - 24. Two hours after the meal it was 32. She says she feels OK.

Any advice on helping her & dealing with such professionals?
Click to expand...


Update:
They have increased the Glargine to 20 units at 9-10 a.m. & her overnight fasting glucose is around 10. That is an hour or so before the next shot of Glargine. The nurses assure her that that reading is satisfactory.

The nurses have asked her not to let me do BS measurements, so they do not have the benefit of an afternoon reading.

Yesterday morning the fasting reading was 16, & she felt unwell in the afternoon. She let me take the BS on condition I did not write in their book. It was 17, 4 hours after food.

I don't want to make trouble for her. She is in sheltered accommodation & dependent on the nurses.

Any advice :?:
 
Ian,

It sounds to me that you have very strong grounds for complaint, but your first step must be to complain formally to your local GP practice about the mis-treatment. If that does not produce the desired result then this link explains what to do next:
http://www.bbc.co.uk/dna/actionnetwork/A2454554
 
Sounds like they don't know much about diabetes (especially the newer synthetic insulins). Obviously all concerend are quite worrried about hypos (especially is she is unaware). But that just means optimising her dose slowly. As her advocate please let the GP know your findings and make sure you write them down. I think it is disgraceful these nurses don't want to know what her control is. I do wonder what their general attitude would be to the rest of their patients. Souhds like they are treating their own anxieties.

If her blindness is due to Glaucoma, she will rely on her peripheral vision. Retinopathy will affect the partial sight she has left. Its is obious that she needs to lower the HBA1C to help protect the vision she has left as well as making her generally feel better.
 
Thanks for the advice - we now have the next hospital appt arranged for May.

Meanwhile ...
Sarah is Indian, she is so blind she doesn't know if its light or dark.
Her readings are normally done before b'fast by her Punjabi helper, not the nurse. Sarah tells the nurse who then records in the log book.

She was unwell - painful neck - & allowed me to take a reading on condition I did not write it in the book. 27.2
I checked the book for the morning reading. 12.2
I checked the meter memory 22.1 I turned the meter upside down to get 1.22 written as 12.2.
Saturday was recorded as a very healthy 5.8 but the meter memory said 24.8

Going by the book, the 14 day average should have been about 10, but the meter said 15.

The helper is Punjabi & doesn't read. Punjabi numbers are different - 4 looks like 8 & 5 looks like 4.

I shall phone the hospital diabetic nurse tomorrow - I have done before & she understands my concerns - & speaks English & Punjabi & Hindi.
 
HI Ian,
Sarah is very lucky to have you! That does sound awful. When I was a kid, my diabetes specialist used to call the HbA1C my lie detector test....so his attitude basically was that what was written in the book was "suspect" if it didn't back up what the HbA1C was. I don't want to scare your friend....and I don't really understand the limitations her blindness places on her, but this situation, in my opinion, can not be allowed to continue! Are you going to the appointment with her? I would basically tell them, what you have told us. Martins point about them keeping her from going hypo is a good one, and I suppose could compromise the results she should aim for in some way....but not that much!!!
Please let us know how it goes...and best of luck!
 
The hospital nurse has accepted my concern.

She will advise the district nurses to read the meter themselves, not accept a reported reading.
She will advise them to allow me to take readings & write them in the book.
My wife & I will go with her to the hospital appt.

Thanks for your advice.
 
We went with Sarah to the hospital.
HbA1c = 11.9.
A year ago it was 9 (on tablets only,) so they started her on 6 units a day of Glargine. And cut down on the Metformin.
Over the year, Glargine has been increased to 24.
The Hospital has now increased it to 26. and increased the Mf.
Fasting BG is currently about 14.
 
The Dr asked us why her Dr had reduced the Mf dose.

He also asked why I wanted to measure her bs, & what I would with the readings. I just said to give additional readings & would report to the diabetic nurses at the hospital - as the district nurses simply write doen the readings, even in the 20s, without reporting.
 
Sarah's annual appt is May 19. Her glargine has been increased to 40 units, all around b'fast. The nurse happily measures & records readings averaging about 14.

They have panicked twice in the year - once when the reading was HI. Dr advised 999. The meter had failed. The other time the reading was 7.5 & they were afraid of a hypo. They came back to check & were relieved it went up to 12 .....

She continues to be very undernourished - lacto-vegetarian & dependent on what her helper & others provide. As far as possible she eats the "healthy" DUK diet - cereal & bananas, skim milk.

Sunday & made her a special version of my carrot/cheese/ground almond/spice "soda bread" without eggs - replaced by "egg replacer" (soya protein) & tomato juice. She ate all 300 g of it. Next morning her BS was a very healthy 5.7 :!: :!: :!: Nurse wrote it in the book without comment or panic. I made her more, & by special request cauliflower cheese, thickened with soya protein & a little cornflour. (About 4 g carb per portion.)
 
It must be very disheartening for you, as a good friend to Sarah, to see what is happening with her diabetes care.
Am I not right in thinking that even some blind folk CAN take care of their diabetic needs? Some insulin pens audibly click, so are there not test meters that audibly give readings too? Of course, I don't know Sarah's other needs and perhaps her sight might be only one of a few things that would prevent her from doing her own jabs and tests.I just feel those readings are too high and I'm sad that those nurses caring for your friend are content to not do anything about it.
I can see you are doing everything you can and I wish I could give some advice. As someone with a severely disabled brother myself, I've seen how bad care is in several nursing homes and at times I've cried with frustration.
Just keep being the good friend you are to Sarah.Making treats that will not spike her, is one positive thing I hope you continue to do.The only other thing is to just keep commenting on those high readings until someone sits up and takes notice of you.
All the best, choccie.
 
Hi Ian
Don't normally reply to messages and cant really advise but just wanted to say Well done in your efforts to help, We could all do with a friend like you.

Best Regards
Brian
 
What a fantastic friend you are, to champrion Sarah's wellbeing this way. I truly believe that when someone's medical condition is allowed to rampage unchecked for such a long time by the staff of a residential facility, it amounts to abuse. Sounds drastic, but it's my opinion.

Bless you Ian, you must feel so frustrated. I suspect you have far more patience than I!
 
Ian

I don't live that far from you. Is there any chance that you could get Sarah's diabetes care transferred to Hillingdon Hosp instead of Ealing?

I understand the carer's point of view about Sarah living on her own, being blind and not being able to cope if she had a serious hypo but they really do need to be pulled up about the way they are doing the bg testing and the level of help the social services are giving.

Lastly, there is a talking bg monitor that Sarah could possibly use herself http://onlineshop.rnib.org.uk/display_i ... =1&l=3&d=0.
Also Novo make an insulin delivery device suitable for impaired vision. Sarah would have to switch to another type of insulin though and will more like, have to give herself injections twice a day which would give her better control anyway. http://www.novonordisk.com/diabetes/pub ... efault.asp
 
Ian
this is one case where I would get through to DUK and ask them if they do any kind of advocacy for someone like your friend. She needs help, above and beyond that of the loving friend you obviously are.
The situation is grave for her. ( possibly literally :evil: ) they are not "caring£ for her at all. She'd be almost as well off without the glargine, I suspect. I wonder what she's eating? I don't like DUK's dietary advice, but they do have "clout". this is beyond ignorance. it's neglect. Whatever else, DUK will be able to tell you what Sarah's rights are.
 
Thanks for advice. We will go with her to the consultant Tuesday week & discuss the case there. Trouble is, she is dependant on the visiting nurses, so a transfer to another authority is unlikely to be possible.

At present she is free of complications, apart from being always tired. She will be getting the retina scan soon which should show the state of her capillaries generally.

I did approach DUK a while ago, & their advice was to try & work with the professionals. Alienating them is not really an option. They need educating.
 
Ian
I work with a woman who has a similar regime and when I visit I check her nursing book etc, more so since Ive been diagnosed myself

She is on lantus, and her units have crept up over the year. Her front page has the accepted fasting bg as between 10-14 and she only gets 1x injection daily, though she can test herself (doesnt record it, doesnt understand significance of it) and of course eats lots of starchy stuff. I have said to the nurse that she allows someone with cardiovascular risk, with mobility probs, previous stroke, smoker etc to run at hyperglycaemic levels which will NOT help pre existing conditions. Now she has neuropathic pain and can hardly get out. This could have been prevented and it makes my blood boil.
She has no notion of her own personal goals and thats part of the problem about being dependent on care of others, it makes you a passive patient. If you dont have the information and impart it yourself then you are ignored. Im so glad Sarah has you and given her visual problems as it is, I cant believe they dont worry about letting her run so high. Its downright scandalous and it does make me worry about the management of my condition when Im older. I fully intend having a written 'directive' about it.

IMNSHO theres also a view that people who are type 2, and older, shouldnt really bother too much about diabetes in the same way as younger people etc etc. As I say, ridiculous
 
Lilibet, I suspect that there is an assumption that until complications arise, there is no need to bother, though in the case of your colleague, it seems serious that complications have arisen & they continue blithely with the destructive regime.

They are, of course, taught that complications are inevitable, so when they arise they are not surprised, & it seems, unable to address them by non-drastic means. Treatment for heart trouble, stroke, retinopathy & amputation they take in their stride, & don't realise the value of proper preventive measures - including a low carb diet.

You may have seen my experience - peripheral neuropathy was crippling me, so I was prescribed quinine, given blood tests for muscle damage, & offered x-ray. It must be cheaper to cut the carbs, & infinitely better for the patient.

All I ever get seems to be, "it may work for you, but we can't recommend it."
 
Yesterday Sarah phoned us in the afternoon to say she felt unwell. The nurse had measured her BS at 22 in the morning. We visited & found it was 17. Its not very helpful just to record high readings & go away.

This morning I had a long & helpful conversation with a dietitian at her clinic. She asked where I got my advice & I told her here. We need a serious discussion with those responsible for her care. Just increasing the once-a-day glargine is obviously not working. Its gone from 6 units to 40, with no noticeable change in daily readings. Unless of course her condition has deteriorated over that period & the increased glargine is controlling it at a high level, which would be even worse.
 
Is it possible at all for Sarah to have a live in carer? They could then see to Sarah's insulin needs and help her. It does sound that two injections a day will probably help of biphasic. Or what about metformin in addition to the Lantus?
 
Merely recording a bs of 22 and not at least notifying her doctor is atrocious.

In view of the big dose increase, it could even be too much glargine, maybe she's having liver dumps and is in the vicious circle that happens if you sleep through night hypos (wake up high -> increase the dose -> go hypo unawares, liver dumps glucose -> high bs -> increase the dose etc). Or glargine just doesn't suit her. Or she needs tablets/insulin with food too. I'd suggest she needs a 72-hour bs monitor, so her doctor can see what's happening over the full 24 hours.

Well done you for fighting her corner.
 
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