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Attendance allowance

D

DennyG

New Member
Relationship to Diabetes
Type 1
Hi. I am a Type 1 diabetic and 70 years old.
I recently applied for Attendance allowance, for night time care, as I find it difficult to hear my diabetic alarm, throughout the night. My husband has to wake me, regularly through the night.
I have been turned down. Even though this is life threatening.
Has anybody else had experience of this please ?
Thank you.
 
DennyG said:
Hi. I am a Type 1 diabetic and 70 years old.
I recently applied for Attendance allowance, for night time care, as I find it difficult to hear my diabetic alarm, throughout the night. My husband has to wake me, regularly through the night.
I have been turned down. Even though this is life threatening.
Has anybody else had experience of this please ?
Thank you.
Click to expand...
I would imagine it’s because you don’t live alone. If your alarms are going off every night perhaps you need to look at your basal ratios. What did you do before CGMs? I’m just playing Devil’s Advocate here to give you some reasons you were probably refused. Would you really want a stranger in your bedroom every evening? If you need help re basal testing or any other aspect of your diabetes please ask away.
 
Which CGM do you have @DennyG ? I find my Dexcom always wakes me because it’s loud, it vibrates too, and I put it on a bare echoey surface.
 
eggyg said:
I would imagine it’s because you don’t live alone.
Click to expand...
I don’t think it will be not living alone. It will be because diabetes doesn’t generally require prolonged or repeated attention during the night. Yes there will be the odd night with CGM alarms but it won’t be that you need someone watching you for prolonged periods every night or someone watching you repeatedly every night.

If you really are having to have your husband wake you multiple times most nights then did you include medical evidence from your diabetes team proving this? As the decline could have been due to lack of supporting evidence.

If someone is having to help wake you multiple times most nights then you need to contact your diabetes team to help you sort your blood sugars out to stop this happening.
 

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Having to wake in the night is no fun. As others have said, best look at your basal insulin and consider running a bit higher at night.
Having to wake in the night will be no fun for your husband, either...you could look at the sugarpixel. It has a vibrating pad to put under your pillow, so you will feel it but your husband will be able to sleep tight. I'm sure there will be other ways of doing it too
customtypeone.com

SugarPixel

SugarPixel is a secondary glucose display and alert system for following your continuous glucose monitor. It is the world’s first dedicated CGM hardware monitor with random tone generation audio alerts, vibration alerts for the hearing impaired, customizable display options, and native...
customtypeone.com
 
We are allowed to link to stuff you can buy, aren't we?
 
Just a idea, did you know @DennyG there are 3rd party apps that can take their feed from the manufacturers app that then might wake you,

especially useful as some of these can themselves run on other devices which CGM are you using ?

It is actually quite simple to use these apps (for example I’ve now got both my readings and a vibration on a smart watch) which wakes me
 
Tdm said:
We are allowed to link to stuff you can buy, aren't we?
Click to expand...
It's fine as long as you don't stand to make any personal financial gain from posting

And the Sugar Pixel one looks pretty good from what I've seen

🙂
 
Hi @DennyG
Sorry you are struggling with your diabetes care.
I am too young to know anything about Attendance Allowance but I am concerned by your anxiety of night time hyposwhic, I assume, have provoked you to apply.
Others have mentioned what you can do with you insulin dose to minimise the risk.
I wonder whether it may also help you to have some counselling to address your fear.
As discussed above, many of us survived for decades without CGMs so we had nothing to warn us beyond our own body’s awareness waking us. CGMs are fantastic but I fear that people are depending too much on technology which may fail. And that dependency is leading to mental health issues.

I urge you to investigate your fear and whether you need to reset your body’s self awareness to address is.
 
mashedupmatt said:
It's fine as long as you don't stand to make any personal financial gain from posting

And the Sugar Pixel one looks pretty good from what I've seen

🙂
Click to expand...
Nope, if anything i stand to loose money as i'm tempted to buy one....

If would be good to have displays round the house so looking at your numbers would be like looking at the clock
 
Are your nocturnal hypos genuine? Are you double checking them with a finger prick? If you aren't and they are false alarms then maybe that is making you worry that you have lost your hypo awareness, when you may not have.

Constant Glucose Monitors (CGM) have certain limitations and one of the main ones is that is you apply pressure to them for a significant length of time, they start reading low and will set off the low alarm when you are not actually low. This most often happens when asleep and you lie on your sensor. We call it a "compression low" because the pressure on the sensor compresses the tissue underneath it and after about 20 mins readings start to drop. You can sometimes tell a compression low if you later look at your graph and you can that levels were quite steady priot to the compression and then they dropped showing a very obvious change in BG levels. For this reason you should always double check any low alarms during the night with a finger prick before treating it as a hypo, unless you obviously feel hypo. Once you learn to look out for "compression lows" when the low alarm goes off you can usually figure them out because you wake up lying on the sensor arm when the alarm goes off.
If they are genuine nocturnal hypos, then you need to look at adjusting your basal (long acting) insulin to prevent them or discuss the problem with your nurse if you are not confident to adjust your basal insulin yourself.
 
Hi Denny
If you are unhappy with being turned down for AA then you can appeal the decision by doing a mandatory reconsideration, go to gov.uk and complete CRMR1 form to start appeal process.
To get AA you need to evidence care and supervision needs. There is information on Turn2us website about it.
Good luck
 
Jade said:
Hi Denny
If you are unhappy with being turned down for AA then you can appeal the decision by doing a mandatory reconsideration, go to gov.uk and complete CRMR1 form to start appeal process.
To get AA you need to evidence care and supervision needs. There is information on Turn2us website about it.
Good luck
Click to expand...
Yep, and AgeUk website also has good info on this, cheers
 
Hope you are able to make adjustments that reduce the incidence of low glucose overnight @DennyG and ways to improve the audibility of the alarms you are missing if you aren’t able to qualify for Attendance Allowance.

Perhaps give the Diabetes UK Helpline a call next week to chat things through with them? The helpline is open week days 9-6 on 0345 123 2399
 
helli said:
Hi @DennyG
Sorry you are struggling with your diabetes care.
I am too young to know anything about Attendance Allowance but I am concerned by your anxiety of night time hyposwhic, I assume, have provoked you to apply.
Others have mentioned what you can do with you insulin dose to minimise the risk.
I wonder whether it may also help you to have some counselling to address your fear.
As discussed above, many of us survived for decades without CGMs so we had nothing to warn us beyond our own body’s awareness waking us. CGMs are fantastic but I fear that people are depending too much on technology which may fail. And that dependency is leading to mental health issues.

I urge you to investigate your fear and whether you need to reset your body’s self awareness to address is.
Click to expand...
helli said:
Hi @DennyG
Sorry you are struggling with your diabetes care.
I am too young to know anything about Attendance Allowance but I am concerned by your anxiety of night time hyposwhic, I assume, have provoked you to apply.
Others have mentioned what you can do with you insulin dose to minimise the risk.
I wonder whether it may also help you to have some counselling to address your fear.
As discussed above, many of us survived for decades without CGMs so we had nothing to warn us beyond our own body’s awareness waking us. CGMs are fantastic but I fear that people are depending too much on technology which may fail. And that dependency is leading to mental health issues.

I urge you to investigate your fear and whether you need to reset your body’s self awareness to address is.
Click to expand...
Helli,
You may feel very self aware but many people need technology for the information to avoid problems like hypos. If you are too young to know about attendence allowance, please listen to us oldies with our experience from many years to judge what works for us. It may not work for you, experience will show.
To be woken by a hypo, and need help at night, is scary. When the urine problem started, I got a wet bed! Too little carbohydrate seems to lead to low blood sugar later, so I can't win.
I keep dark chocolate and glucose sweets with water on hand for when I wake up.
I hope you will always have a good rest at night. but I found diabetes and incontinence do tend to go together, beware.

I have been advised by an incontinence nurse, to advise for AA which I could use to pay for incontinence pads! Not sure if I'll get them, but I have the form to complete!
 
@maceg1 I am sorry to read about your struggles and sorry I seem to have upset you. I was not making any assumptions about the impact age makes on diabetes management.
However, hypos are very different to incontinence. They can be fatal. It is rare but is something drummed into those of us with Type 1 (and maybe those with type 2 on insulin) from the start.
And technology for detecting hypos is far from perfect which is why we need to maximise our hypo awareness.
This is how people survive insulin treatment for decades before CGMs.

Please do not assume other members of the forum have life easy just because they are younger. I have experienced incontinence. Before my diagnosis with Type 1, the symptoms of high BG is the need to use the toilet frequently. However, after weeks of high BG, I was so tired I could not get out of bed to use the bathroom.

Even since then, diabetes on top of a sometimes very stressful job has ensured that I frequently do not get a good night’s sleep.

Good luck with your AA application. I hope you are successful.
 
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