Replies to This Discussion

Permalink Reply by biggleton on August 14, 2010 at 3:32am

Hopefully i will soon be starting on a pump, and my consultant says that although it would be too expensive to use the CGMS feature of the pump all the time due to the glucose sensor, i might use one from time to time to get an idea of my level of control that cannot be detected by regular finger stick tests.

Permalink Reply by Sue on August 17, 2010 at 7:38am

You've probably done the right thing in self-funding -- the Dexcom 7 is probably the best bit of kit for the job. You might not have got that if it was through the NHS. There is a postcode lottery, but there's also a lot of variance between different PCTs. It seems very much that it's all down to luck. I had a 3-month trial, but it did not impact my HBA1c. I was also told that I did not have severe enough hypos to really warrant going on CGM and that I might if I was lucky get one more sensor very occasionally in order to get data to help check if the pump was set right for my needs. I think this technology is amazing but a long way away from either being affordable or easy to use. Sue

Permalink Reply by Alison Finney on August 27, 2010 at 8:20am

I have had NHS funded pump and CGM for the last 3 years following a very long fight. More details here http://www.shootuporputup.co.uk/2009/07/show-me-the-money/

I suspect the fight would be even harder in today's economic climate which is significantly different to what it was when I fought for funder.

Permalink Reply by SpikeJ on March 29, 2011 at 11:23am

Just found this thread & wanted to see if anyone else would fancy causing a load of bureaucratic trouble so that we can get some sort of official recognition for how useful CGM can be. I know getting a pump on the NHS can be difficult but it can be done if you're prepared to argue & or change hospitals due to the NICE guidance. I fought long & hard for my pump & was one of the first two diabolics to be put on one at my hospital. There are now, apparently, over a hundred of us. It can be done, so why not try for CGM as well?

Permalink Reply by biggleton on March 29, 2011 at 1:42pm

Sounds like a good idea spike,
although i dont appreciate you using the word "diabolic" :P. Seriously though, ive recently had a few CGMs with my minimed pump and they were really fantastic, Im pretty sure that having a sensor full time would almost certainly take my A1c down a few notches. Obviously i am fortunate to even get a sensor, and i think they should be available to all diabetics in the uk, Having said that, I do respect that NICE has to make very tough decisions about funding, and unless studies have been or will be conducted that show that CGM makes up for its initial cost by preventing complications then NICE will be unlikely to change its stance, and (to be fair) if it turns out that in most cases CGM is not cost effective then NICE, in my opinion, should allocate funding to other treatments which have been proven more effective.

What with government spending cuts and the healthcare reforms i think it may be difficult in the near future to achieve funding for CGM in all trusts in England. I was very lucky as i said, but life sadly is not fair and there will be some unlucky diabetics somewhere who wont even get the option of a pump or even decent MDI treatment let alone CGM.

Sorry about the essay! but I would definitely support you in any effort to secure better funding for CGM systems

Permalink Reply by CheekyGrin2011 on August 20, 2011 at 5:37pm

Hey I am sorry I cannot answer your question but am interested in what contious glucose monitorig system is and how it works.

Permalink Reply by Alison Finney on August 21, 2011 at 6:51am

Hi. CGMS works by placing a sensor under your skin (I wear mine in my stomach or back) which monitors the levels of glucose in your intistitial fluid (fluid just under your skin). You insert a new sensor (just like an injection) about every 7 days. You wear a small transmitter attached to the sensor and that sends the results back to a small monitor (mine is incorporated into my Medtronic insulin pump). The display updates every 5 mins to show you your glucose levels.

It doesn't avoid the need for blood testing completely as you need to do finger pricks to calibrate the machine 2-4 times a day. And because it measures glucose in the interstitial fluid, rather than in the blood, the results on your CGMS won't be the same as on your blood glucose meter (they tend to lag behind by about 20mins), but I've found it invaluable for improving my control.

More on what I think are the pros and cons of CGMS here - http://www.shootuporputup.co.uk/2009/04/to-cgms-or-not-to-cgms/

More on how it's benefited me here - http://www.shootuporputup.co.uk/2010/06/what-made-the-difference/

Permalink Reply by everydayupsanddowns on October 20, 2011 at 1:01am

I have seen forum posts by people (notably ShootUp's Alison, of course, but some children too) who have managed to secure funding, but since NICE don't currently recognise CGMs as a treatment option(!) these are very much the exception.

Basically - rare as hen's teeth... :(

Permalink Reply by AC on October 20, 2011 at 2:47pm

hi
I have used a dexcom for the last year and have reduced by hbaic from 7.8 down to 7.1. I self fund it.
When I told diabetes practice nurse last week that I used the dex - she was interested in it but had not heard about it. Is keen to see it but sadly I wasnt wearing the dex it that day (as just stopped a session due to skin irritation of the sensor tape - after wearing it for 20 days).
There needs to be greater awareness of cgm's amongst health professionals and people with diabetes and maybe in the furture they will become more accessible, however, the cgm's system/sensors are too expensive for the nhs to fund.

Permalink Reply by Alison Finney on October 21, 2011 at 7:12am

AC I agree with you that we need to raise awareness of CGM - my care team had barely used one until I started using one, and they certainly learned about the benefits of it from my experience.

How do you decide that they're too expensive for the NHS to fund? Have you seen a cost/benefit analysis on them? I haven't, but I work on the assumption that there will never be enough money in the NHS, the question is how to spend what we have most effectively. Kidney dialysis costs approx £30,000 a year. (source: http://www.uktransplant.org.uk/ukt/newsroom/fact_sheets/cost_effect... ) Research shows that CGM, costing around £2.5k a year is effective in helping people reduce HbA1c, which in turn reduces the risk of complications. We can only make decisions around whether treatments should be NHS funded based on facts, and I've not seen a robust business case that shows me either way whether CGM's are cost effective.

Permalink Reply by Jgos on October 24, 2011 at 3:28pm

So just a few numbers - personal of course - I have had a Navigator CGM from Abbott for about three years now. It has been fantastic on all fronts. I have got back into cycling and skiing with no problems (except when it gets too cold which oddly is more skin temp when cycling than skiing). Anyhow, my basic numbers are the number of tests (finger pricks) I was doing per day were 10. So a tube of 50 strips for 5 days. The Nav is a 5 day sensor. So the cost of the strips is £26 plus change. The Sensor is £36 when bought in batches of 3 boxes (6 per box). So this is a clean comparison before we get to the results I have had on dropping my A1c's - which the PCT's are meant to be using as bench marks for funding.

This is before you get into longterm complications and the cost of, meds, care, beds.......you name it !!! So it makes me very angry that the PCT's dont recognise the benefits they are missing.

I now use an OmniPod as well and life is good. Have some bad days but thats becasue I sometimes forget about the D word. So I have 2 PDAs that talk to me. It shouldnt be that the NHS dont look at the basic facts. CGM really helps. Happy to discuss. Jgos

Permalink Reply by AC on October 25, 2011 at 2:08pm

Ok, so in retrospect, shouldnt have just said cgm's are too expensive for the nhs, we know that cgms can save money in the long run, but I dont think the NHS will fund cgm's for everyone who wants one. Like pumps -they would have strict criteria that many of us dont meet.
Dexcom sensors are around £60 each, some last a week, some longer. I think it would be great if the nhs funded cgm's but in reality I don't think they will in the next few years. Meanwhile we need to raise awareness of the value of cgms.

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