Petition for Freestyle Libre on NHS

[donnellysdogs]

I was too analytical constantly with my CGM. I wasted a lot of my life analysing -and getting frustrated with inaccurate readings especially at night.
I had a freestyle navigator funded.
Personally, I have my life back... Having other illness has made me realise that balance of life and looking after whole body.
I prefer to spend time enjoying myself now and living freedom from my obsessive behaviour and constant frustration with my CGM.

 

[Jaylee]

WARNING: They are addictive

You've tempted me to try "a halve" now..!

 

[tim2000s]

My point of view is that the cost of Libre is t in the device itself but in the education required to get people using it properly. The 5000 plus people on the Facebook group have a lot of people that struggle with interpreting what they see and making changes, so even with Libre or CGM education is still required.

Personally, the issue isn't, for me, whether or not they are available. It's that if its not on the NHS then the prices are exorbitant. We need a model whereby the beneficial extras can be obtained at a lower cost whilst retaining critical and essential care for free.

 

[vix107]

I have used the libre since Nov 2015 and it is absolutely fantastic, within a month my a1c had already started to drop it can tell you in which direction the levels are going not just what it is there and then like a finger pricking test, to me it's invaluable and I will literally never go without it unless cost becomes too much. It is a pricey gadget to keep up with but I think it would be fair if there was a 50% cover by the NHS as it wouldn't be any different to what it costs in test strips for a blood meter, and in the long run better control means less complications and therefore a much lower cost to the nhs

 

[vix107]

You have made some really good points Brunneria and I do think accuracy etc are important considerations becuase of the cost:benefit calculations. NICE could rightly never support something that had failings. I firmly believe that a good real time glucose monitoring system is the way forward to help insulin users particularly and those who are striving to improve their health but maybe the technology needs to improve somewhat before public money is spent. Anyway I need to sleep. It has been good to be involved in some good natured debate. Goodnight everyone.

I check every sensor I put in and to be fair the furthest out any of them have been in the last 6 months is 0.3

 

[vix107]

I wouldn't want a pump attached to me either, but Libre sensor is about the size of a £2 coin and I almost never notice it.

I just forget it's there unless I want a reading!! Also not bad to apply and I have a needle phobia!!! Also going into the pump in June as I'm determined to turn things around

 

[Flakey Bake]

I was too analytical constantly with my CGM. I wasted a lot of my life analysing -and getting frustrated with inaccurate readings especially at night.
I had a freestyle navigator funded.
Personally, I have my life back... Having other illness has made me realise that balance of life and looking after whole body.
I prefer to spend time enjoying myself now and living freedom from my obsessive behaviour and constant frustration with my CGM.

Aye, some people did warn they can be addictive and diabetes should not rule our lives. I still think as a short term tool it has value.

 

[richyb]

sorry but are we not as a country contributing huge amounts to overseas aid. Far more than wealthier contries. As long as this type of thing happens then the country is not broke but has plenty of money. For instance Poland I was told have no debts yet are not as well off as us.
I say increase spending on the NHS regardless..

 

[sklane11]

The NHS are strapped for cash as it is. I think we should be grateful for what we get for free already.

A Libre is not an essential part of diabetes care.

I know for me the past couple of months with the libre have been life changing. I've never felt so positive about my diabetes and know for a fact my hba1c will be much lower. I don't think the cost difference between test strips and the libre will be that much, especially if you factor in the cost of severe complications in later life we could avoid through the benefits of CGM/FGM

 

[isjoberg]

Hi, just a heads up, there is another petition on the government site:
https://petition.parliament.uk/petitions/124259
Which would enable this to be debated in Parliament. I know in this thread there are a few concerns about where the money to fund this will come from, and from my personal experience with the NHS I doubt I would ever qualify to get this on the NHS. However, for people who are really struggling with blood sugar control, especially erratic results at night and parents taking care of young children with diabetes, this could be perfect.

 

[KarenUllah]

The NHS are strapped for cash as it is. I think we should be grateful for what we get for free already.

A Libre is not an essential part of diabetes care.

For people who work in places where it is difficult to do a blood test and for people who do not like finger testing, this is an essential piece of kit. Plus the fact the savings long term to Diabetic health care will be enormous, and far outweigh the cost of this every two weeks. This sensor is fitted permanently for two weeks, at less than £50, to do 2 weeks testing using glucose test strips costs more than this - bearing in mind if you are a driver - how often you have to test etc. It should be noted that this does not replace the finger testing but is a great help and improvement with the information available, both for the end user and the medical profession.

 

[Robinredbreast]

Fascinating discussion. May be it would be helpful to some and not to others. I think I would find it very useful. Take the last few days, I have been quite unwell, BS high, with very little to eat or drink, Monday morning my BS was 17.2. Even though I rarely get infections, coughs or colds, stress and worry makes my BS shoot up to a very high level. If I could get one, at a reduced price (as I get family credit), that would be great for me. My client, who I work for, has 3 grandchildren with type 1 and he has bought and is funding a Libre for the oldest child. Then his ex wife with fund the second, (if it shows to be helping) and the 3rd child funded by the dad.
I know my dad would of helped me out financially, but that has been taken out of both our hands now.
People who can self fund are very lucky.

 

[amackey]

I am somewhat of a lurker and like reading some of these forums but rarely post but thought I really must here.
Without any intention in offending anybody I really wonder why some people do sign up and post on the forums. Is'nt the main objective to learn as much as possible about this disease and what it does to you in an effort to avoid complications and help us all just live a bit longer. Is the common goal that as long as we cant defeat it to control it.

Diabetes is so complex and is such a killer. I don't know the stats but I would imagine that treating complications is as much of a drain (or more) on the NHS as the paying for approved supplies. Pretty much all US insurance companies approve CGMs and most patients would love the opportunity to have a libre (not available in the US yet). Believe me those insurance companies have done the math and believe CGM to be a cheaper option.
The libre itself probably shouldn't be funded but the sensors should. If they were their price would immediately drop and Abbott would probably give away the monitors. Given the sensors are currently approx £47 similar to a box of strips and with the reduction in strip use it would be at least cost neutral in a short timeframe.

I personally use a self funded libre, I also have a self funded Dexcom G4 and I use Omnipod pumps. Anything that can help me gain control has to be welcomed in my book. The Dex is great but it is expensive, can be a bit of a beast to manage and a little intrusive to wear. The libre is just a joy, easy to insert, hardly noticeable and a huge confidence giver. Neither is completely accurate but just to see a dynamic reading where you can understand what is happening between those static fingerpricks is invaluable.

For the young, for active people, for parents just being able to see what a reading is and where it is going is worth any price. I use far less sticks now. If I costed it I'm positive I would be less of a burden to the NHS if they paid for some sort of CGM for me.

I personally believe that the libre should be available to anybody who wants or needs it and I also believe active CGM should be too. I cant imagine being a parent of a type 1 toddler without one or for people suffering from night time lows they are a lifesaver. Calling ambulances for treating severe hypos doesnt come cheap.

If it doesn't suit your lifestyle or your conscience you dont have to have one. Nobody forces you to use a certain blood glucose monitor. I can afford to self fund but thousands cant so I support any effort to make funding of these medical devices (they're not gadgets) available and would urge everybody else to too.

 

[Flakey Bake]

I had my review at the hospital today. I am having some problems fine tuning and understanding what is going on with spikes and overnight. I mentioned to the consultant that I was thinking of a frestyle libre and what was his opinion. He response was overwhelmingly positive. He said if I get one, send the downloads via diasend. He said CGM and libres are the best tools ever and he must have apologised about 20 times that he could not provide it on the NHS. He said as a consultant seeing the charts is a joy becuase he can really see what is going on and help his patients. He also said to be proactive, lobby your MPs, lobby your diabetes support groups lobby anyone who will listen. It is the next step. I am ordering one tonight.

 

[tim2000s]

@amackey, CGM on US health insurance is much more of a fight for many than you make it out to be. Reading through the Facebook CGM in the Cloud group, a lot of people have really had to fight their insurance companies to get it.

The cost of Libre sensors is also not equivalent to a box of testing strips. Test strips vary between 6.99 and 17 GBP per box. Even at the most expensive end, you are talking 150 strips per sensor, which on the scale that the NHS uses makes it uneconomical given just how many people test fewer than one time per day (over 60% of UK type 1s before you ask).

Those of us who take the care and accept the cost of looking after ourselves are sadly in the minority. While I agree that this stuff should be available on prescription, I fully understand from an economic perspective why it is not. As a result we end up with a two tier health system where only the better off can afford the better care and in addition, the U.K. Sign off processes take far too long to deliver results.

I suspect that we will see Libre sensors on the NHS at about the time artificial pancreases become available everywhere else.

That's why I think that the UK model is not quite right but I'm certain the US one isn't either.


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[GlucoseHugs]

It has been interesting to read people's thoughts on this, I have been type 1 diabetic for 36 years and in the past 5 years have been on the insulin pump. I have self funded the libre for sometime although due to the cost of these I don't have them that often. I think it would be beneficial for diabetics to get these at a reduced rate, it certainly would benefit me. I have trouble getting my hba1cs below 8.0 and before you ask, I have had education on diabetes for most my life, I have lived with it most my life and got complications due to diabetes and being honest the libre helps me in seeing what my levels are doing throughout my day to try and help me without the painful finger pricking after 36 years!
I am interested in talking to people who have managed to get their sugars below 8.0, I really struggle.
I spend alot of time at the hospital if the libre was cheaper or we had a health cover we contribute to, I would be in. That is just my opinion, I know there are lots of conditions and illnesses that need nhs funding. I would like to hear how you think education would help diabetics who are type 1 and will never not have diabetes and it's complications when you have had it this long?

 

[Jane!]

It has been interesting to read people's thoughts on this, I have been type 1 diabetic for 36 years and in the past 5 years have been on the insulin pump. I have self funded the libre for sometime although due to the cost of these I don't have them that often. I think it would be beneficial for diabetics to get these at a reduced rate, it certainly would benefit me. I have trouble getting my hba1cs below 8.0 and before you ask, I have had education on diabetes for most my life, I have lived with it most my life and got complications due to diabetes and being honest the libre helps me in seeing what my levels are doing throughout my day to try and help me without the painful finger pricking after 36 years!
I am interested in talking to people who have managed to get their sugars below 8.0, I really struggle.
I spend alot of time at the hospital if the libre was cheaper or we had a health cover we contribute to, I would be in. That is just my opinion, I know there are lots of conditions and illnesses that need nhs funding. I would like to hear how you think education would help diabetics who are type 1 and will never not have diabetes and it's complications when you have had it this long?

Hello Glucose Hugs... I've only had Type 1 for 10 months so not qualified to 'advise' ( my second HbA1C was 6.4 and my most recent 5.5) but for what it's worth, when I was diagnosed I was so frustrated by the inaccurate advice I was given ( set insulin dose that was far too high, told to eat lots of carbohydrate to prevent hypos & told that I'd never get blood sugars in the normal range) that I trawled the internet and bought Dr Bernstein's Guide to Normal Blood Sugars which I've found to be invaluable. My diet is very low carb and I really notice the difference when I have to eat out & have less control over my food. I have had the Libre for 3 months now & it's amazing in helping me identify which foods spike and how long I should bolus before eating. It also really helps me manage small correction doses to keep in my target range.I also follow Hannah Diabetes Expert and have watched lots of presentations on Youtube re low carb eating. The next purchase on my list is 'Think Like a Pancreas'. Daily exercise makes a real difference to my levels too ( and trying to avoid stress!). I have learnt so much from using the Libre but am aware that I'm lucky - I can afford it, others can't.

 

[Redjason2373]

Hi, just a heads up, there is another petition on the government site:
https://petition.parliament.uk/petitions/124259
Which would enable this to be debated in Parliament. I know in this thread there are a few concerns about where the money to fund this will come from, and from my personal experience with the NHS I doubt I would ever qualify to get this on the NHS. However, for people who are really struggling with blood sugar control, especially erratic results at night and parents taking care of young children with diabetes, this could be perfect.

Hello Everyone,

This post grabbed my attention as I am self-funding Libre and thought although the Libre is not completely accurate I find the majority of the time it's only a maximum of 1mmol/L out from my finger prick test.

Looking at the link provide above I was surprised to see so few signatures to the petition. Although this CGM/FGM is not for everyone it could be the first step to the NHS funding CGM'S for those that are most in need of one.

I wanted to post to try and bring the petition to people’s attention with this post.

I have been a frequent reader on this forum and very seldom post, since this is one of my few posts I want to thank you all for sharing all you’re at stories and your diabetes management tips, they certainly have helped me get back on the rails after a crisps & chocolate blow out after those numbers won’t do what your expecting.

Jason

 

[Jane!]

Hello Everyone,

This post grabbed my attention as I am self-funding Libre and thought although the Libre is not completely accurate I find the majority of the time it's only a maximum of 1mmol/L out from my finger prick test.

Looking at the link provide above I was surprised to see so few signatures to the petition. Although this CGM/FGM is not for everyone it could be the first step to the NHS funding CGM'S for those that are most in need of one.

I wanted to post to try and bring the petition to people’s attention with this post.

I have been a frequent reader on this forum and very seldom post, since this is one of my few posts I want to thank you all for sharing all you’re at stories and your diabetes management tips, they certainly have helped me get back on the rails after a crisps & chocolate blow out after those numbers won’t do what your expecting.

Jason

Hi Jason, I was surprised to see so few signatures and surprised that so few folk considered it to be useful - I've found it amazing - really helps me prevent highs and lows ( rather than correcting them after the event) and is really helping me learn what works for my body and what doesn't. That's why I posted the original post ( but then stayed out of the debate). I find the Abbott Freestyle Libre Facebook page really helpful.

 

[GlucoseHugs]

Hello Glucose Hugs... I've only had Type 1 for 10 months so not qualified to 'advise' ( my second HbA1C was 6.4 and my most recent 5.5) but for what it's worth, when I was diagnosed I was so frustrated by the inaccurate advice I was given ( set insulin dose that was far too high, told to eat lots of carbohydrate to prevent hypos & told that I'd never get blood sugars in the normal range) that I trawled the internet and bought Dr Bernstein's Guide to Normal Blood Sugars which I've found to be invaluable. My diet is very low carb and I really notice the difference when I have to eat out & have less control over my food. I have had the Libre for 3 months now & it's amazing in helping me identify which foods spike and how long I should bolus before eating. It also really helps me manage small correction doses to keep in my target range.I also follow Hannah Diabetes Expert and have watched lots of presentations on Youtube re low carb eating. The next purchase on my list is 'Think Like a Pancreas'. Daily exercise makes a real difference to my levels too ( and trying to avoid stress!). I have learnt so much from using the Libre but am aware that I'm lucky - I can afford it, others can't.

Thank you for your tips there, I don't eat alot of carbs but I do know when I have eaten too many, Chinese food is only a treat for me now and again as I find my sugars spiral when I have had one. I have tried to get them lower. Even to the point of barely eating which isn't ideal. I admittedly don't do regular exercise and I do need to address that. I will take a look at those references in your post and see if they help, thank you.

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