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Pumps without CGM for acute diabetics.

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
C

CarSam Lau

New Member
Relationship to Diabetes
Parent of person with diabetes
In August 2017 our son died of diabetes.
His cause of death was hypoglycaemia, now determined at inquest.
His diabetes was exceptionally unpredictable and he was prone to night time hypos.
An insulin pump was funded by the CCG but this did not mitigate his diabetes completely.
The CCG was approached for funding for CGM devices to stop the pump on the event that he was going hypo.
Whilst we were awaiting funding ( ghis can be up to 6 months) he died.

Has anyone had similar experience and how did you deal with the psychological effects of these circumstances please?
 
I can't actually help you as I simply haven't experienced what you're having to go through, so all I can do is sympathise I'm afraid.

Have you heard of the Cruse (note the spelling - no 'I') Bereavement organisation? They have a website, I don't know whether they'd be able to assist or not?
 
trophywench said:
I can't actually help you as I simply haven't experienced what you're having to go through, so all I can do is sympathise I'm afraid.

Have you heard of the Cruse (note the spelling - no 'I') Bereavement organisation? They have a website, I don't know whether they'd be able to assist or not?
Click to expand...
 
It's a solution to the chasm between medical need identified and the CCG providing funding that I want to address.
I am wrecked and will always be so , others should be prevented from being where I am.
 
Hello @CarSam Lau and welcome to the forum.
I'm so sorry for the devastating loss of your son.

My experience of trying to get CGM funding from my CGM was a non starter as well. Even though I have type 1 diabetes, Addison's disease MS and a few other autoimmune conditions I was told quite firmly (like a naughty child) That no I could not have a CGM because no one else had one so it wasn't fair to allow me to have one. Yes the tw*t in the CCG actually wrote that in the decision letter.

I did write back and point out that I didn't think it was fair I had all the extra cr*p to contend with either but wasn't complaining about it.
My sensors and transmitter are very kindly provided by a charity instead.
 
CarSam Lau said:
It's a solution to the chasm between medical need identified and the CCG providing funding that I want to address.
I am wrecked and will always be so , others should be prevented from being where I am.
Click to expand...
I'm truly sorry to hear of your loss CarSam Lau. I would recommend contacting the Diabetes UK Helpline service, they may be able to direct you to resources where you can make your voice heard. Details here:

https://www.diabetes.org.uk/how_we_help/helpline
 
Hi CarSam Lau. I can’t imagine what you are going through, I don’t know how or if I would cope.

The funding for CGM is a postcode lottery at the moment. There is work going on at a high level to address this, but who knows how long it will take.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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