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CGM funding-is it possible?

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J

Josmidge

New Member
Relationship to Diabetes
Type 1
Hi! I'm trying to find out if it is at all possible to get NHS(or otherwise)funding for a continual glucose monitor. I'm a 38year old Personal Trainer and avid triathlete and runner. It's getting harder and harder to manage my sugars owing to fluctuating exercise levels-through the nature of my work and training. My biggest struggle is at night and I know that my HBA1C levels would be so much better if I could see what was happening through the night- hence a CGM. Early morning high glucose readings are stopping me from working and training. Any thoughts on who I should approach?
 
Josmidge said:
Hi! I'm trying to find out if it is at all possible to get NHS(or otherwise)funding for a continual glucose monitor. I'm a 38year old Personal Trainer and avid triathlete and runner. It's getting harder and harder to manage my sugars owing to fluctuating exercise levels-through the nature of my work and training. My biggest struggle is at night and I know that my HBA1C levels would be so much better if I could see what was happening through the night- hence a CGM. Early morning high glucose readings are stopping me from working and training. Any thoughts on who I should approach?
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Very few adults have the privilege of having a CGM funded by the NHS :(
The sensors cost about ?60 each so can understand why. They are not part of NICE guidelines so no PCT is obliged to fund them.
Like you I have problems with very low blood sugars at night time , mine are caused by lack of cortisol. (addison's disease) PCT refuse to fund a CGM for me saying it wouldn't be fair on all the other diabetics within the pct!
 
Josmidge said:
Hi! I'm trying to find out if it is at all possible to get NHS(or otherwise)funding for a continual glucose monitor. I'm a 38year old Personal Trainer and avid triathlete and runner. It's getting harder and harder to manage my sugars owing to fluctuating exercise levels-through the nature of my work and training. My biggest struggle is at night and I know that my HBA1C levels would be so much better if I could see what was happening through the night- hence a CGM. Early morning high glucose readings are stopping me from working and training. Any thoughts on who I should approach?
Click to expand...

You might be able to get one for a few days to try and determine what's happening so you can work out a strategy to tackle it, but as Sue says very difficult for an adult to get funding on NHS. Do you have a pump? If not, that would probably help to make adjustments for your activity levels etc.
 
Alison (shootuporputup) a member here did successfully secure NHS funding, and a handful of others have too - but it is not currently easy.

I suspect at some point CGM will be appraised by NICE, but at present it's a question of getting consultant support for your individual case, then getting your PCT (or whatever they are these days) to agree to fund it.
 
I hope the non-invasive CGM hits the market soon, will make it much more affordable for people to buy privately and maybe even for PCT's to provide. My understanding is the sensors are the big cost in the current devices so with the only consumable some optical gel these have to be a great way forward.
 
I went to a presentation by C8 Medisensors for their optical non-invasive CGM which they hope will launch in Europe next year. Unit is likely to be ?2,500 I think, but with no ongoing sensor cost and a minimum 4yr lifespan. Still not cheap, but more viable for more people certainly.
 
I thought they were hoping for this year Mike, has the launch been pushed back?
 
All down to CE mark approval I think - and they cannot affect the timing of that!
 
Hi Mike,

I hadnt even heard of this system - it sounds good. Do you know if they have done trials yet and whether that includes children?🙂Bev
 
Hi Robofski,

Thanks. it does look good doesnt it - would be interested to know what results have been and whether they will start to licence them for children. Alex uses the VEO with cgm which we really like as it has the 'low suspend' feature - but if this system is less invasive them would like to see/trial one. Maybe in the future though.🙂Bev
 
Bev

It will only be launched as for over 18s as far as I know - any other use would be what was described as 'off label' when I met them. As i understand it this is not because they think there eould be any problem, but just because they have not (yet) run sufficient research projects with that age group to be sure. Approval process seems long and tortuous (and I guess that's a good thing actually!)

Error grids etc will be published at launch I think - and I believe they are intending to allow a 28 day return policy so people can try it for themselves.

I've been keeping an eye on this for a little while now 🙂
 
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Hi Mike,

Thanks. Wouldnt it be great if they take off - very affordable for more people than normal CGM's. I will be watching too!🙂Bev
 
Thank you so much for your replies everyone. I have been type 1 for 8 years but have never logged on to a forum like this before. I can't believe this support and answers were at my fingertips all along! I am going to contact my PCT and attempt to push my case- they can only say no! My consultant has suggested a pump a number of times but. Am so hesitant - mostly because I am concerned it won't fit in with my lifestyle-swimming/running and generally wearing Lycra!!! The thought of people staring at me whilst at the pool is scaring me off! Are they really visible? Also did anyone experience weight gain when using a pump?
 
Josmidge said:
Thank you so much for your replies everyone. I have been type 1 for 8 years but have never logged on to a forum like this before. I can't believe this support and answers were at my fingertips all along! I am going to contact my PCT and attempt to push my case- they can only say no! My consultant has suggested a pump a number of times but. Am so hesitant - mostly because I am concerned it won't fit in with my lifestyle-swimming/running and generally wearing Lycra!!! The thought of people staring at me whilst at the pool is scaring me off! Are they really visible? Also did anyone experience weight gain when using a pump?
Click to expand...

You might find this site useful if you want to pursue the idea of a pump:

http://www.input.me.uk/

or in Scotland:

http://www.ipagscotland.org/

Have a look in the pumping section - there are lots of threads answering peoples concerns about pumps. The general consensus is that you forget they're there after a few days!

Good luck! 🙂
 
Josmidge said:
Thank you so much for your replies everyone. I have been type 1 for 8 years but have never logged on to a forum like this before. I can't believe this support and answers were at my fingertips all along! I am going to contact my PCT and attempt to push my case- they can only say no! My consultant has suggested a pump a number of times but. Am so hesitant - mostly because I am concerned it won't fit in with my lifestyle-swimming/running and generally wearing Lycra!!! The thought of people staring at me whilst at the pool is scaring me off! Are they really visible? Also did anyone experience weight gain when using a pump?
Click to expand...

If you have a cgm it's the same size as a pump. So your best bet is to go for a pump and fine tune your control. The Animas pump is water proof people have swam the chanel wearing them 🙂 Weight gain.... nope. A pump is ideal for running and swiming.
 
Josmidge said:
Thank you so much for your replies everyone. I have been type 1 for 8 years but have never logged on to a forum like this before. I can't believe this support and answers were at my fingertips all along! I am going to contact my PCT and attempt to push my case- they can only say no! My consultant has suggested a pump a number of times but. Am so hesitant - mostly because I am concerned it won't fit in with my lifestyle-swimming/running and generally wearing Lycra!!! The thought of people staring at me whilst at the pool is scaring me off! Are they really visible? Also did anyone experience weight gain when using a pump?
Click to expand...

Hi Jos

I spent many many years 'pump averse' before deciding that the only way I would know for sure if it would work for me, in the same way it seemed to for *everyone else* was for me to give it a go.

I think everyone considering it worries about the attachment (a fear which quickly evaporates for pretty much everyone) and also shares your concerns about the overtly 'medicallyness' of having a pump.

For moderate periods of activity (gym... swimming... bedroom 😉 ) most people simply disconnect, then reconnect when done. The cannula (the little tube that goes under the skin) is usually housed in a plastic conector surrounded by sticky plaster, and when disconnected you just cover that with a little cap. Not invisible, but not much more noticable than a plaster.

If running outside for a longer time you could probably house the pump in something similar to how people carry MP3 players etc - various neopreney solutions exist... And of course you'd be able to set a reduced 'basal' rate during long term medium intensity exercise which would mean less need for 'top up' carbs.

I have experienced no weight change, but TBRs (temporary basal rates) mean I don;t necessarily need to scoff fruit pastilles to cover activity (unless I choose to of course). The only slight problem might be self control - the pump copes rather better with snacks/tricky meals etc than MDI did for me so I can more easily join the family in cakes biscuits these days whereas on MDI it was more problematic than it was worth.

At the end of the day - my advice to you would be the same as was given to me. Everyone is unsure at the start. Do some reading up then go for it and see how you get on for a year. If it really isn't for you you can always give it back!
 
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