Has anyone been successful in getting a continuous glucose monitoring system funded by the NHS?
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.
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
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.
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?
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
Hey I am sorry I cannot answer your question but am interested in what contious glucose monitorig system is and how it works.
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/
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…
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.
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_effectiveness_of_transplantation.jsp ) 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.
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
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.
I agree AC - but as you said we have to make an argument for CGM from a cost side. 1 being day to day. 2 being long term
I have used a CGM of a different make. The do occasional funding so I have one every few months and I am not going to lie, I hate every minute of having it. To onlookers, this is strange as I love my pump to the world. The CGM actually makes my control worse due to the fact that the calibration messes up. My CGM told me that I was 2.1 once and I had been having so much juice to get it up though my sugars didn't seem to be budging and I was feeling rather ill but I did a test and I was 17 or so. The CGM had told me I was low when I was seriously high. I find that my control is better on normal finger pricks if you test regularly. The NHS only sees fit to give out CGMs if you have bad sugar glucose which happens regularly when you are 12 due to growth and holidays so push your case at these points to your consultants as they are helpful when you have bad sugars. Normal times though, you can control it, if you know your patterns, with just your finger pricks.
I suppose that it always depends on the quality of the particular make. Probably if a common glucose meter on finger pricks is a bad quality one, they can also make such drastic mistakes as the CGM you describe.
I have just received notice from the Northampton Hospital to say that I can have a CGM for 1 week only to see what is going on with my very erratic levels. We put the request in ub January 2011! Only just come. Apparently they have funding for two machines a year! Very unfair, but I must say, I am not surprised.
I am partially lucky enough to get one every so often...well the Medtronic one which is a mini harpoon if that's lucky :P and I only use it for trends as I don't think I've ever had an accurate reading out of one yet. Anyhow, getting a bit side tracked (as always) here. Been reading more and more on the Dexcom and it does sound pretty good accuracy wise, and I assume due to postcode lottery not a chance of getting one up here.
So am curious as to how much and how did those self funding one, how did you get hold of it and the sensors? Thanks.
What is a mini harpoon?
Does it hurt much to put in? And can you have a shower when you use one?
Maybe over exaggerating a bit on the harpoon part, but they do feel rather more like something you want to go fishing with and personally I find they are rather irksome when inserted, and even more so when being inserted.
Removal wise they do come out all right with a lil tug, but they are much more attached than a normal infusion set, and a lot more painful than the normal cannula insertion etc. I find some just annoy all the time till it comes out and leave a bruise and a nice red mark for a few days.
Partly why I am interested in the Dexcom is that the sensor is from all comments a lot easier to insert and a lot more comfortable, also giving more variety of placement areas. I've tried the Medtronic sensor in a couple of places now but it really seems to only sit well in my mid section or flanks. Is generally too bulky and I keep knocking it, and generally niggles a bit to remind me it's there. Would love to be able to move it to my arms like many with the Dexcom users seem able to do. Think most of this is being a cyclist I have tiny little arms with nothing for the Medtronic sensor to get into.
Shower wise I think you are meant to disconnect the transmitter part which has the battery on it as well. Although a large waterproof sticky pad over it seems to work just as well.