Petition for Freestyle Libre on NHS

[glavesr]

Mahola, yes you are right everything is cash strapped these days. But from the Libra users I hear from indicate that has really helped their control. It would be good to get these on the NHS, even on a tempory loan basis. I would welcome the chance to use one of these for a month to understand what is going on, particularly during in the night and pesky dawn effects. I work full time and fatigue is a constant battle, I would die on my feet if I did routine 3am checks.

As a libre user I can honestly say it has changed my life
Before getting a libre I was seriously uncontrolled to he point where I talking monthly trips to the hospital with DKA since getting my libre I have manège to get my blood sugars practically perfect
Although people do mess to realise these liners are not about the no finger pricks testing for no abbot needs to spend time on the technology to work out the kinks the reasons the sensors are needed now is to indentify 24 paterns and work with that feature like I have I have sorted my bg out

 

[stevieboy269]

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 think the off the cuff comment you have made is without any real thought or knowledge being applied.
As a long standing type 1 diabetic I disagree with what you say for several reasons

1) If you finger prick more than 10 times daily the Freestyle Libre Sensor is cheaper
2) After 40+ years of finger pricking you can imagine (or not) the pain and other issues this causes
3) For diabetics who have no hypo awareness this technology is vastly more user friendly and more to the point safer
4) For paediatric patients it is again far more user friendly

I could go on but I hope you get the drift ...... Don't say things without thinking

 

[becca59]

I would prefer the NHS spent its money on cancer treatments, resources and emergency care. And dietary advice - providing it was better advice than is provided now.

If more money is going to be spent on diabetes, i would prefer that it went on education.

Just reading this thread for the first time. Since started over a year ago, CGMs have become more commonplace for those able to afford them and those I have talked to who have them really love the knowledge it gives them to help with control.
I was at a diabetes conference last Saturday the 24th June. One of the most astonishing facts we were told, was that there are now more people in this country with diabetes, than cancer and Alzheimer's combined. Anything that can help with control and help prevent complications, which ultimately will save money, must be useful.

 

[becca59]

I wrote a small paragraph which has attached itself to the first page. I wanted to repeat this one fact. There are more people in this country now with diabetes, than Alzheimer's and cancer combined. Anything that can help reduce costs to the NHS is very important. I feel, just like testing strips and the more tailor made use of insulin we have nowadays CGMs will eventually be more cost effective long term.

 

[New2T1D]

I've worked out what finger pricking costs the NHS compared to Libre and Libre is actually CHEAPER. This is based on what we used to use compared to what we use now - loads of lancets and testing strips basically, vs sensors and a very scant number of testing strips. Not only that, given its ability to give such great data, surely people's long term health outcomes will be better, thus saving the NHS significantly longer term. I have seen a HbA1c reduce by 2.1% between quarterly hospital appointments, because the whole picture was obvious and could be quickly adjusted to. I know you're supposed to finger prick daily as well, but we have taken the view that if you trust a meter, why not trust the Libre, especially when the big result appears to be pretty good. My son finger pricks only sometimes: when a score of less than 4 is showing on the Libre reader, when he's in low 4's and the arrow is pointing down, or when he feels hypo. There is usually minimal difference. That's our choice and it works for us; not recommending this is right for everyone or indeed anyone else, of course. The stress of finger pricking was massive in our family and the Libre just changes that. Can't understand why it isn't available on the NHS really. Hopefully it will be one day. Doesn't seem fair that some people can't access this gem of a product.

 

[tim2000s]

I've worked out what finger pricking costs the NHS compared to Libre and Libre is actually CHEAPER. This is based on what we used to use compared to what we use now - loads of lancets and testing strips basically, vs sensors and a very scant number of testing strips. Not only that, given its ability to give such great data, surely people's long term health outcomes will be better, thus saving the NHS significantly longer term. I have seen a HbA1c reduce by 2.1% between quarterly hospital appointments, because the whole picture was obvious and could be quickly adjusted to. I know you're supposed to finger prick daily as well, but we have taken the view that if you trust a meter, why not trust the Libre, especially when the big result appears to be pretty good. My son finger pricks only sometimes: when a score of less than 4 is showing on the Libre reader, when he's in low 4's and the arrow is pointing down, or when he feels hypo. There is usually minimal difference. That's our choice and it works for us; not recommending this is right for everyone or indeed anyone else, of course. The stress of finger pricking was massive in our family and the Libre just changes that. Can't understand why it isn't available on the NHS really. Hopefully it will be one day. Doesn't seem fair that some people can't access this gem of a product.

I've done the maths on this, and it's not quite as good as you might think.

Firstly, don't start with the assumption that everyone fingerpricks between 8 and 10 times a day. That's a small minority, sadly.

The average number of fingerpricks done per day by T1s in the UK is a lot lower and the various studies that have been done (this one from 2009 looking at the UK and Denmark: http://www.sciencedirect.com/science/article/pii/S0168822709001946) suggested that the majority of T1s actually test no more than daily. This report (http://www.bmj.com/content/319/7202/83) which looked at glucose test strip prescription redemption showed that 16% probably didn't test and 20% didn't go through enough prescriptions to test once daily. This Swedish study showed that 43.9% of those who responded to the survey said they tested more than 4 times per day meaning 56% didn't. .

Once you take this into account, you realise that whilst getting this technology into the hands of those who want to use it would be brilliant, the bigger question is whether it would change behaviour of users. I've written about that before here: http://www.diabettech.com/diabetes/...-testing-behaviour-and-the-cost-implications/

In summary, yes this stuff is great, but the costs are much harder to drive out. On a one-to-one basis where a user is already using a lot of SMBG, it makes sense and the costs stack up effectively. Versus someone who doesn't, and who tests less than four times daily, the direct cost comparison argument fails, and due to the behaviour differences, providing them with a Libre doesn't mean that it will change their behaviour. There's much more required than that.

This is why what we really need is a study that takes a number of these people who test really irregularly (say a sample of 250) and give them all Libres for free for six months with appropriate training, and then see where we end up after that period of time. If we see a statistically significant change in behaviour and clinical outcomes, then you can see why the NHS would benefit. If we don't then it's back to the drawing board.

 

[New2T1D]

I've done the maths on this, and it's not quite as good as you might think.

Firstly, don't start with the assumption that everyone fingerpricks between 8 and 10 times a day. That's a small minority, sadly.

The average number of fingerpricks done per day by T1s in the UK is a lot lower and the various studies that have been done (this one from 2009 looking at the UK and Denmark: http://www.sciencedirect.com/science/article/pii/S0168822709001946) suggested that the majority of T1s actually test no more than daily. This report (http://www.bmj.com/content/319/7202/83) which looked at glucose test strip prescription redemption showed that 16% probably didn't test and 20% didn't go through enough prescriptions to test once daily. This Swedish study showed that 43.9% of those who responded to the survey said they tested more than 4 times per day meaning 56% didn't. .

Once you take this into account, you realise that whilst getting this technology into the hands of those who want to use it would be brilliant, the bigger question is whether it would change behaviour of users. I've written about that before here: http://www.diabettech.com/diabetes/...-testing-behaviour-and-the-cost-implications/

In summary, yes this stuff is great, but the costs are much harder to drive out. On a one-to-one basis where a user is already using a lot of SMBG, it makes sense and the costs stack up effectively. Versus someone who doesn't, and who tests less than four times daily, the direct cost comparison argument fails, and due to the behaviour differences, providing them with a Libre doesn't mean that it will change their behaviour. There's much more required than that.

This is why what we really need is a study that takes a number of these people who test really irregularly (say a sample of 250) and give them all Libres for free for six months with appropriate training, and then see where we end up after that period of time. If we see a statistically significant change in behaviour and clinical outcomes, then you can see why the NHS would benefit. If we don't then it's back to the drawing board.

Ah, I see - how fascinating, thank you. I guess I don't understand why someone would take the risk of long term complications, by not managing really well. Then again, this is my son I'm talking about and I'd do almost anything to protect him and keep him safe. It's the one area of his life that I am super controlling over and it seems to be rubbing off, helping him to work hard at managing the darned condition. He is amazing - he was a chocaholic who now doesn't touch the stuff because he chooses to eat well.

What you have said is really enlightening and it helps me to understand the fuss the hospital consultant has made when my son's had his appointments. We didn't understand all the profuse congratulations, but from what you've said, now I do! The consultant took away the Diasend chart with all the daily numbers on it, acting as if he'd never seen one before. I guess he was pleased to see the efforts made.

It's because my boy was doing 10+ finger pricks per day that the Libre is so liberating for him and us all. I hated drawing his blood for the 3am checks and now a quick scan and I don't remotely disturb him. Because of the data Libre gives, I sleep better and do far less 3am checking, instead of every night before. Paranoid about high bs, paranoid about low bs - argh!

Fortunately, my son has learned good habits. I hope he sticks to them, when he leaves home for Uni and for life. Maybe the Libre should be given to people who prove by their behaviour that they'd benefit from it. The NHS now turns people away from surgery if they don't change their habits prior, since they are less likely to benefit from the surgery if they don't look after themselves.

You've helped me to see that habits and behaviour are the real keys to managing diabetes. The tech only makes it easier. Thanks!

 

[ManUtdGal!]

If free treatment on NHS was not free for all the tourists and refugees it would be in a better state. They have to pay at home so can't complain. The amount of people being let in to live here is in the 10,000's and not one has ever paid towards the NHS but expects free treatment. Also the amount of people who go to A&E is ridiculous as a high percentage do not need it! They should see their out of hours dr or ask advice from a chemist as most of the time that is all that is needed. I am a trained nurse and Type 1 for 46 years. The care we had when I got it at 3 was nowhere near what it is now. I had no blood monitors or help from the internet etc and not as much could be done. I have Charcot Foot, Neuropathy and have lost a toe because care was not as good when I was young. I would love to have a CGM as I go hypo during the night and do not wake up. I cannot afford to self fund and think it should be available to those with problems and not just given to everyone. But the savings it would help with are less test strips needed, less hospital treatment which helps overall.

 

[sheepie123]

I would prefer the NHS to stop funding these drug companies to have their executives on big wages. Why cant the NHS not command a massive discount with Abbot for these Libre? I am a computer programmer and I would say theres probably like £5-£10 of components in one of those meters

 

[tim2000s]

I would prefer the NHS to stop funding these drug companies to have their executives on big wages. Why cant the NHS not command a massive discount with Abbot for these Libre? I am a computer programmer and I would say theres probably like £5-£10 of components in one of those meters

That there might be, but there's also a very large amount of research gone into the sensor biodynamics and the trials to make sure it works. It's not "just the cost of the reader components".

 

[barrym]

I would prefer the NHS to stop funding these drug companies to have their executives on big wages. Why cant the NHS not command a massive discount with Abbot for these Libre? I am a computer programmer and I would say theres probably like £5-£10 of components in one of those meters

Very little is sold on a cost plus basis, but on a perceived value, or what the market will stand. There's a thing in business called the S curve, where price is plotted against the introduction timescales. Early adopters pay most, as a product picks up the price comes down, eventually reaching maturity where price will be at commodity level.

I did read somewhere that iPhones cost a few 10s of dollars to make, but r&d has to be paid for and the market will stand a premium price.

I imagine we agreed in the early adopter phase still for the libre.

I to struggle to justify the cost, but am very close to making the decision based on many factors. I'm a geek, T1, would appreciate a better view of BG levels than I get with finger pricks. So a mix of all the factors discussed.

 

[Cofty]

I would prefer the NHS spent its money on cancer treatments, resources and emergency care. And dietary advice - providing it was better advice than is provided now.

If more money is going to be spent on diabetes, i would prefer that it went on education.

Education is unfortunately the challenge among the Type 2 diabetes population (and I do not mean that to all those with T2, but it is a well known among the medical community that better education could significantly minimise the better incidence). However, type 1 diabetes is less about education, much more about effective management and, for those with good-ish control, small gains make significant differences. The bulk of funding, research and discovery nowadays is focused on T2 because it is such a pandemic, but let's not forgot the type 1s out there who need modern advances like this to sustain a decent life through 50-80 years of living with this disease.

I used this Abbott meter for 2 weeks (paid for myself) and already noticed that between 12pm and 5pm my BG levels would rise - this is fantastic insight that could shave 10-20% off my HbA1c if I could get more use of the technology. But to 'consumers' it is £60 a fortnight - that's over £3k a year. I cannot afford that.

I'm not asking for annual use, just 5-6 fortnights a year to get these constant measures. The NHS would not pay £60 a pop, they would pay a much lower list price. I'm sorry but there is very little investment into type 1 and I see this as a highly beneficial tool that would return high cost-benefits given the reduction in HbA1cs and resulting reduction in long term, high cost complications of having a disease for several decades.

 

[Cofty]

Very little is sold on a cost plus basis, but on a perceived value, or what the market will stand. There's a thing in business called the S curve, where price is plotted against the introduction timescales. Early adopters pay most, as a product picks up the price comes down, eventually reaching maturity where price will be at commodity level.

I did read somewhere that iPhones cost a few 10s of dollars to make, but r&d has to be paid for and the market will stand a premium price.

I imagine we agreed in the early adopter phase still for the libre.

I to struggle to justify the cost, but am very close to making the decision based on many factors. I'm a geek, T1, would appreciate a better view of BG levels than I get with finger pricks. So a mix of all the factors discussed.

I too am a finger pricker and they're great for spots in time. But take this example: Two weeks ago my BG levels hit the high 20s (my HbA1c is mid 7s so this was freak). I could not fathom why. For the next 24 hours I pumped in an entire cartridge that would normally last 4 days. I must have finger pricked 40-50 times, it was driving me nuts. In the end it started subsiding and I spent the remaining 6 hours dipping in and out of being low. Now, I had a Libre sensor by this point and wow, what I difference - I had a constant reading, could monitor the direction of travel and speed of decline or rise, saved my fingers from a total battering, could respond much more effectively, and my speed of recovery was significantly quicker.

I've several other examples- at work, going out, playing squash, cycling, days out with the kids...loads of regular events that can through you patterns. This tool gives genuine insight, a proper understanding and a much better grasp of what is going so you can respond more effectively. And each time you respond more slickly, more precisely, and things get better and better. That's why I think this is NOT something T1s should receive as a long term prescription, but for intermittent and periodic use. A truly insightful tool that can make a very compelling difference.

 

[Cofty]

I know my daughter wouldn't want one. I've already asked her if she'd like one and she said she didn't like the idea of having the sensor stuck to her all the time. Same answer for a pump.

Funnily enough, I was very sorry keen

I know my daughter wouldn't want one. I've already asked her if she'd like one and she said she didn't like the idea of having the sensor stuck to her all the time. Same answer for a pump.

So for those who think the Freestyle Libre should be free on the NHS; where will the funds for this come from?

Bear in mind, the NHS can't afford glucose monitors for type 2s and junior doctors are already working for less than minimum wage...

Personally I would reduce strip usage for type 1s and invest that into these new, better technologies

 

[Cofty]

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.

Yes I agree with education in that sense. However, DSNs & consultants are given the space to only offer pumps to T1s that can 'manage' pumps (as well as fitting NICE clinical criteria) - why not entrust them with similar responsibility on CGM-type technologies?

 

[Cofty]

I know my daughter wouldn't want one. I've already asked her if she'd like one and she said she didn't like the idea of having the sensor stuck to her all the time. Same answer for a pump.

After 30 years of injecting I rejected the offer of a pump. I was persuaded and have never looked back

 

[Cofty]

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.

The low number of signatures isn't necessarily because of a lack of support, I expect it's more because of a lack of awareness of the petition. That's why I've now joined this forum – to raise awareness so then at least if the number of signatures are low, it's not because of a lack of awareness

 

[Cofty]

I stand by what I said. The NHS is strapped for cash as it is. Fact.

A Libre is NOT an essential part of diabetes care. If it was, those of us without one wouldn't be able to manage our diabetes every day.

I could manage my type 1 without blood tests, but I wouldn't live very long....

 

[JC Durant]

Mahola I have been T1 for 25 years. This is an amazing step forward especially for a young person. Better control means less expensive complications. If you daughter is worried about having a needle in her arm I promise you she won't feel or notice it. The NHS will save a fortune. I use my 50 times a day. It is wonderfull

 

[Grumpy ole thing]

At the risk of being shot down in flames, I don't want a CGM, or pump. I've been T1 for 40 years, so not that I don't understand, but as a life choice for me. If they were non-invasive I would re-consider, but anything which starts on the outside of me and finishes on the inside is not for me.