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need help on on sensor augmented pumps.

Russem

Russem

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Pump
Hi, I have been type 1 diabetic for 40 years and I was given an insulin pump in July last year as I was having too many hypos, some of them serious and had to get paramedics out to the house. My problem is I have no warning signs of having a hypo, they started to diminish about 4/5 years ago and then 2 years ago they went completely. Although the pump has reduced the amount of hypos I still have them and frighteningly they also happen during the night. I asked at my Diabetic clinic about a CGM in October last year and they asked me to give them a letter with why I should get a CGM which I did, they said they would try and get funding, which they haven't been able to do. I was back at the clinic yesterday and I asked if they had heard anything about the funding and was told that they have not been given any funding for CGMs. A CGM would be a life saver for me but I am being refused one. I don't know what I can do now?
 
To get NHS funding for a CGM your consultant will have had to make an individual funding request to your CCG and the CCG makes the decision on funding. It might be worth clarifying with your clinic whether they have actually made an individual request for you - the answer you got sounds a bit more generic - if a request has been made for you you might be able to get more information from the CCG on why it wasn't successful. You might want to contact INPUT diabetes for advice on NHS funding for CGMs.

The alternative is to self fund a CGM - they are costly, but worth it especially with no hypo awareness.
 
I had to self fund my CGM because a) they are not funded & b) my DSN told me they would not be successful if I asked for one, I'm one of the lucky ones who can afford it.

Have you asked your DSN if you can borrow one from the hospital so you can use it to monitor your BG's - with this at minimum you can see if you get on with them.
 
Before I was given funding, I had to write a list of bullet points on how hypos were affecting my life. I still have some hypo awareness but found it worrying that I could be e.g. sitting knitting a complicated pattern, making no mistakes, when my blood sugar was around 2. The possibility of collapsing in the street, or the dance floor, was always at the back of my mind.

I think, in my case, the fact that I was dancing 5 or 6 times a week went in my favour, and my not driving "just in case", along with a couple of other "worries".

My DSN prepared some kind of form/letter for my consultant to sign and, after a couple of months, she let me know I'd been granted funding. (I think she was determined that I should get the cgm before my husband went into hospital for an OP, so that I wouldn't be worried I'd go hypo during the night when I was alone in the house.)

I got the feeling that the letter requesting cgm funding should certainly not make false statements but should stress the adverse effects on your everyday life.
 
catapillar said:
To get NHS funding for a CGM your consultant will have had to make an individual funding request to your CCG and the CCG makes the decision on funding. It might be worth clarifying with your clinic whether they have actually made an individual request for you - the answer you got sounds a bit more generic - if a request has been made for you you might be able to get more information from the CCG on why it wasn't successful. You might want to contact INPUT diabetes for advice on NHS funding for CGMs.

The alternative is to self fund a CGM - they are costly, but worth it especially with no hypo awareness.
Click to expand...
I was told they filled in a form and I also wrote down how my lack of hypo awareness was affecting my life but was still turned down, I'll contact INPUT as you suggest. Thanks
 
Chas C said:
I had to self fund my CGM because a) they are not funded & b) my DSN told me they would not be successful if I asked for one, I'm one of the lucky ones who can afford it.

Have you asked your DSN if you can borrow one from the hospital so you can use it to monitor your BG's - with this at minimum you can see if you get on with them.
Click to expand...
I was given one for 1 week and it worked great but they still say there is no funding.
 
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