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Petition for Freestyle Libre on NHS

On the "people" point, what about those of us who are already educated and already have good control? For us, it should not be "education first, tools second" because we already have the education and knowledge. We know our diabetes better than anyone. If you can show that you understand your diabetes and are managing it well then CGM should be provided to help you to continue to do that. As we all know, T1D is hugely burdensome and - for most of us who care deeply about it - there is literally not an hour that goes by when it is not on our mind. If you can show you are self managing and CGM would help you do that more easily then, in my opinion, CGM should absolutely be provided by the NHS. Even if it is the case that "30% of people struggle", "over 50% don't even test daily" there is no reason that those of us who do invest our time and mental energy into this horrible condition shouldn't be given the tools to make it easier.
 
The thing is, I do not feel you are mature. There is a very low chance the Libre will be on the NHS
 
It's going to be difficult to tell. Ultimately it will be driven by NICE guidelines, which at the moment state that CGM is provided to adults only when there are either serious hypoglycaemia problems or when there is persistent hyperglycaemia.

I suspect there will be some form of guidance that requires clinics to offer Libre only where there is evidence that a person using insulin is testing more than the 8 or 10 times a day recommendation. They may also use some form of Hba1C bar (that wouldn't surprise me). This is why I'd like to see Abbott or a couple of NHS clinics get out and properly trial the Libre with people who don't test and seemingly don't look after themselves, to see if it makes a difference in that context (basically, does flash monitoring change the approach of the least frequent testers if they don't need to finger prick?).

I think there's an interesting case for that, or for the "Pro", where the sensor is applied in clinic, is used blind, and the end user goes back to the clinic, has the data downloaded and then recommendations are made by staff based off that data.

All guessing at this stage of course.


I don't disagree, however, the NHS model doesn't work like that. It works on providing the appropriate approach for the best care for a majority, and where that care is expensive and the evidence is not great in support of use of technology (that's more an issue with the way evidence is collected than it necessarily being true across the population), NICE is much more crcumspect. As a result, education benefits more people at a lower cost and has a better evidence base than CGM, however loud we like to shout about it. And of course, the quality of life analysis model that NICE uses doesn't take into account "tools to make life easier", so even if they do, the funding model doesn't include it.

But this all comes back to how the NHS works, how these things have to be budgeted for and what else it has to spend money on, and I think there is dramatic room for improvement there.

nathanw777 said:
The thing is, I do not feel you are mature. There is a very low chance the Libre will be on the NHS
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I'm not sure what your point is Nathan, but there is already a lot of work going on to get this in place, and all the commentary coming from the top of the Diabetes silo int he NHS suggests that this will be the case late this year or early next. As an aside, the Leeds area hospital trusts are about to issue Libre on the NHS for all children, so technically, that would make it already available.
 
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tim2000s said:
Ultimately it will be driven by NICE guidelines, which at the moment state that CGM is provided to adults only when there are either serious hypoglycaemia problems or when there is persistent hyperglycaemia.
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Thanks for your insight into this, @tim2000s . I would - and will - be very happy to see it available on the NHS, but will be continuing to save my pennies for self-funding it in the future (as I do now) because I would be unlikely to fit criteria for hypos or HbA1c - I am of course grateful to be such a position with my diabetes control, supported by my Libre and of course my pump.

I view my Libre as an all-round 'life improver' and am delighted to have access to the technology.

 

Lots of really interesting stuff, but this post, in my view, forms the core of the "pro" argument. In the meantime (and, please, don't roll your eyes and go "Ugh, T2 weighing in..."):

1. Throughout this thread people have been talking cost vs meters and their test strips (and finger pricking), which is a fallacy. CGM is designed to be used alongside regular testing, While, arguably, it could be a help to responsibile self-managers when it comes to reducing complications, it's an immediate cost increase.

2. The more the NHS buys of something, the better the deal they can get. This is why things are slow to change. CCGs band together to procure better deals from their suppliers. This is why, for example, people who have issues with incontinence haven't seen an improvement in their products for years and years - the CCG groups stick with the best deals.

Which sounds like potentially great news, but it means that, sure, entering the market and buying a supply of CGMs for patient use, a CCG group will get a great deal. But the chances are that product will not change, no matter the improvements made to other CGMs and the technology in general.

Which means, ultimately, people - as with continence products and so on - will be able to get CGMs through the NHS, but to get ones that suit your needs and are the best / easiest / most efficient available, they will still end up self-funding.

3. "Essential" means "cannot live without". Not "really helps and has changed my life after 30 years" (for example). Currently, the NHS does not fund medical cleansing kits for children with central lines and trachys who are not in hospital. I'd call that stuff fairly essential. In fact, the wealth of actually essential stuff that isn't funded would blow your minds. It does what it can.

I appreciate the benefits. I can see people who cannot imagine managing their diabetes without a CGM, and I salute you for it. And, yes, in children and the elderly, they are obviously beneficial. But that does not make them "essential".

4. "Cost-saving" in the NHS is also a fallacy. I worked on a project that ultimately ended bed-blocking in high-dependancy bed in my local children's hospital. It just required community services to co-ordinate and communicate more effectively, but ended up "saving" the hospital £2 million in its first year.

This wasn't money the hospital got back. It was just money it didn't have to spend. It's not like when we go grocery shopping and pay £1.50 instead of £3 for our cheese - they will not have that £1.50 as "extra".

The notion of "saving" the NHS money is media myth that proves popular with readers and viewers. In real life, you don't save, you just don't spend as much on that particular thing. The money still gets spent.

5. This issue will not be fought and won via people power and petitions, but with a strong business case requiring an overall look at potential savings (hospital admissions, complications, self-management etc) vs potential costs (the immediate outlay, education - and NHS staff training and awareness, The X Factor). If the first can be demonstrated to outweigh the second, CGM will be made available.

It might seem as if I'm being terribly negative, but I'm actually in support of this being available on the NHS. I'm pro anything that allows people to empower and manage themselves more effectively. But with that in mind, I agree with something @Brunneria said very early on on this thread about education and better diet advice, and that links back to the post I quoted.

We can't have all the things we want all the time. And once we get what we want some of the time, we need to be ready to put it to good use.
 
I agree. I choose to have a Libre and am prepared to pay for it. But I know I could (grudgingly and with immense regret) do without it if I could no longer afford it (it's a big stretch as it is, tbh).

Reading this thread this morning I suddenly had visions that once NHS approval is in the bag for the Libre, the NHS would be rapidly bankrupted...!

 

There are research articles that show the average person with type one diabetes tests 1-3 times a day. With the libre in the trial phase this increased to 15. I've seen the documentation as I was chosen as part of the trial. It's easy to say that those who finger prick do so less often than me but you are missing the point. It's how much more often people test with a libre that's the magic. This helps with all other things mentioned by me in my post. Spotting patterns, better management and therefore less long term complications (hopefully). Also. Imagine being g a parent who could scan a child rather then disturbing them during the night.

If people can prove they're trying to be conscientious with their diabetes (which I am) then a libre should be a consideration. It doesn't bother me if it's assessed case by case based on prescriptions made of testing strips and lancets.

I further accept that there needs to be more education, but as you and I both know diabetes is not an exact science. Where I live we are encouraged to participate in courses put on by the NHS but I don't think this alone is going to help people who have been diagnosed T1. There are too many variables, if you are not conscientious enough to seek educating yourself further then you shouldn't have access to the libre. I am, I read, I use this forum and I access my community team the libre alongside this makes me even better st managing my sugars. Every nurse I've discussed it with agree that the money would be well spent and I trust that they know their stuff.
 
I've read the studies, believe me, and studies are cleverly constructed, dangerous things. The study that the "increased to 15 times per day" came from is the Abbott IMPACT study, and as ever with studies, the devil is in the detail.

To be included in that study, your Hba1C had to already be less than or equal to 7.5% and the participant had to "report self testing of blood glucose levels on a regular basis equivalent to a minimum of 3 times daily for at least 2 months prior to study entry".

Even the most clinically naive HCP knows that a less than 7.5% Hba1C is almost never correlated with testing only 3x daily, so the IMPACT study skews the starting metrics to only allow participants that make up less than a third of T1Ds (based on the UK National Diabetes Audit Data) who in general already have a decent level of management. Or in other words, the majority of participants were already educated enough in diabetes care to understand how testing helps and therefore testing more regularly was a small step.

Basically what Abbott did (to use the Typologies that Sophie Harris identified in her PhD) was set the bar for participation to be only "go-getters" (high educational attainment, high thirst for knowledge, and internal locus of control leading to self-education) and some "not yetters" (long-standing diagnosis, previous or current judgmental relationships with HCPs). These two categories are estimated to account for around 35% of all T1Ds. It ignores the "trodden downers" (low numeracy, low self-worth, nervousness of taking control); and "diabetes downers" (denial of diabetes or avoidant behaviour making it difficult to self-manage). I can't say I'm a huge fan of the naming convention and I did raise this when I reviewed some of the work for her.

So while I agree that for those of us who fall into the "Go Getters" and top end of "Not Yetters" (and I include you in the former), there is clear evidence of an increase in testing (I wrote about it myself here a couple of years ago), there is no evidence supporting that the same is true for the "trodden downers" and "diabetes downers". That's where the studies need to focus. The other side of this is that those are also the people that will benefit the most from educational help, and here's where the crux is, and it's something I've discussed at length with a number of people. The money pot is finite.

So the policy question becomes:
  • How do you balance the use of finite resources between those who need the most help and have very poor clinical indicators and those who are already managing their condition successfully and have clinical indicators such that they will not suffer significant long term issues?
And that's not a pleasant one to answer, as the simple answer is, in a society where we have a shared funding model, you should help those with most need, and that, I'm afraid, isn't us.

In terms of "I want one" behaviour, which we all exhibit from time to time (and believe me, I've tried to come up with ways to do a cost share with my CCG in order to fund CGM supplies), until a system can replace SMBG at the same cost as SMBG, it has to show significant out-performance on the clinical indicators and QALYS model. Again, people are working on this, and I think they'll get there. The difficulty is that the equation to get stuff like this funded by the NHS is not straightforward, and that's why it's so frustrating for those of us who care about our condition.
 
Prior to my last diabetic review the practice pharmacist had attempted to reduce my finger prick blood testing strips (actually cassettes as I use an Accuchek Mobile device) by 50%. They insisted that I attend for a 'diabetic review' with the practice DSN. I explained that this reduction was completely unacceptable due to the level of control I work extremely hard to maintain and due to lifestyle and driving 70,000 miles per year for my job. She would not budge until I threatened to lodge an appeal with the CCG. I said I would also be making a formal complaint for the clumsy manner in which this had been attempted. I also suggested that I had taken legal advice and that I would be starting legal proceedings against the surgery for loss of earnings once I became unemployed because to continue driving with the reduction in daily tests I might very well lose my Driving License as DVLA insist on testing every 2 hours while at the wheel. At this point she referred me immediately to the senior GP at the practice. Upon meeting him I explained my situation and he initially refused to change the decision to reduce my test regime. I explained the minimal monthly cost saving he would be making compared the potential extremely high costs to him of surgery and aftercare associated with poor diabetic management and asked if this was his preferred option? I also said that I would fight this decision with my dying breath if necessary as what he was doing was plainly wrong. At this point he reinstated my monthly allocation of cassettes. He did go on to say that the feeling from most of his colleagues is that the greatest majority of diabetics of all types really do not give 'two blind ones' about good management of their own condition and that the NHS needed to save money from whatever sources the doctors were able. This shocked me to my core but not as much as the next 5 minutes of conversation with him. He asked me why my blood sugars were always low first thing in a morning? I explained that I had tried a number of possible solutions to combat 'dawn effect' and that I had arrived at one that worked for me. He went on to ask me 'What is dawn effect?' At first I really thought that he was joking. He was in fact serious and I had to explain it to him. I would find this hilarious if it didn't terrify the pants off me quite so much. We have doctors oblivious about aspects of our condition. How then can we expect them to offer the best treatment options? He did not know about my Libre and quite frankly did not want to know. I do know a few doctors and he appears to be no better or no worse than the vast majority of others that I have met. They are all trying to squeeze out whatever they can financially. With this in mind even if the NHS announced tomorrow that they will approve the use of Libre which in fairness I feel would not be the diabetic panacea that some of my diabetic brethren seem to feel it might be. The doctors at surgery level more than likely would not prescribe it. There appear to be a growing number of type 2's who are at odds with their own doctors who are now refusing to supply them with any blood testing equipment whatsoever and hiding behind 'NICE Guidelines' with extremely flimsy excuses for reasons not to prescribe. I may appear a little bit negative but the future looks far from bright for any of us of any type. NHS Libre I am afraid is just a pipe dream for many diabetics and if you can't afford to fork out for it then you ain't gonna get it.
 
NICE guidelines, far from being "a pretty flimsy excuse", are how the NHS determines what care to give to whom, and how to spend its money. It's how CCGs allocate that money and more importantly, it's how a GPs liability is determined. Let me give you an example.

I asked my GP, if I was considering going on to a Calcium Channel Blocker, could I use Verapamil, as it was shown to have benefits for T1s and was on the prescription list. I was told "No. You have to go on to Amlodipine, as that's the NICE guideline recommendation, and has shown the best clinical outcomes and safety." When I questioned why, he admitted that it wasn't worth his license to prescribe against NICE guidelines because if anything goes wrong, it's on his neck.

Now T2 testing strips aren't Amlodipine or Verapamil, but the mechanism by which the surgeries get measured and paid means it isn't worth NOT following the NICE guidelines for them, however dumb that might seem.
 
But, further, GP's cannot possibly be expected to understand the ins and outs and specific mechanisms and quirks of every, single disease and diagnosis. They're trained to spot the big stuff and refer it forwards. They are the nation's triage mechanism and, unless they express a specific interest in an area and are approved (they have to justify their needs too!) to train further in it - for example, elderly care - they will not be supported if they wish to go further.

Your DN, in all likelihood, knows more about diabetes than your GP. But your GP knows more about when to refer people to hospital, when to medicate and when to send home more than anyone else in the NHS, I'd wager (and I say that in full acknowledgement of what I've been through recently).

I'm impressed that your GP approached you and asked any questions at all - he shouldn't be scorned for that. He was plainly trying to understand the issue.
 


Let me explain why I feel what the GP's are doing is very much flimsy. The actual NICE Guidelines are freely available to anyone choosing to look for them. I will however paraphrase. They say that type 2 diabetics who are not treated with insulin or other medication likely to induce episodes of hypoglycemia should not routinely be prescribed with glucose testing equipment. They suggest evidence that there is no actual benefit to type 2's from testing. The inference I draw from this is that they feel that the only purpose of glucose testing is in hypo prevention. If ever there was a more flawed point delivered by any organisation I have yet to witness it for myself. Lots of type 2's with a strong interest in their own longevity enjoy real benefits from glucose testing. The implications for them from poor management are just as significant as for type 1's. I know of GP's denying all of the type 2's in their care the testing equipment which might significantly enhance their own management, reduce their chances of complications and prolong their life. This in essence dilutes a flawed reason for denial into a completely flimsy one. NICE does provide latitude to GP's to prescribe testing equipment to type 2's where a benefit might be felt. Some GP's rather conveniently neglect to consider this possibility. I personally feel that in the best interests of furthering the cause of all diabetics we all might be better petitioning the Secretary Of State For Health to provide type 2's with the equipment that they need rather than trying to squeeze through a less than perfect and sometimes rather clumsy device like a Libre which has appeal for a small, rather specific niche audience. Just a little food for thought I hope to contribute.
 
All of the data that NICE uses to generate the guidelines is listed in the full documents of the guidelines, and if you go and look at the studies that have been done relating to Type 2 SMBG, you find that all of the available, published evidence supports that view - that there is no benefit to type 2s from testing. This is mostly because the studies are flawed in how they use SMBG. Rather than using it to identify those foods that cause issues and address them, they have historically used similar SMBG regimes to Type 1, and those are generally unsuccessful in managing T2.

So let's step back a bit from that point, and come back to GPs offering T2s SMBG kit. They are explicitly told not to routinely do this, unless certain criteria are met (a bit like pumps with T1, and I don't know if you've seen that part of the forum, but similar fights go on about those), and very few GPs will run counter to what is clear in the guidelines, especially with cost targets to hit.

It's really the same discussion as CGM or Libre on the NHS in a different context, which is that for the majority of type 2, it really isn't worth offering. as most won't use it effectively, as appropriate education is required. I expect that it's less than 10% of T2s who are interested in using SMBG effectively. I'd argue that the best way to get a GP to provide it is to have an adult discussion about how you intend to use it with clear identification of what you expect the benefits to be and targets you have set yourself. Most GPs (I've found) are open to that kind of approach and will often change their point of view if the right approach is taken.
 



Oh blimey now there's the rub. My GP and my DSN seem blissfully ignorant as each other about major aspects of the diabetic condition. My HbA1c came in at 46. My DSN was rather irritated by this and said that it was way too low and that I should be aiming for 57. I let her go for a bit before pointing out that the NICE target HbA1c introduced in August 2015 was below 48. She was not ready to accept this. At this point I directed her to the NICE Website where the target to reduce your chances of diabetic complications are clearly stated. At this point I became quite annoyed and asked her what part she felt that the surgery had played in my diabetic management in the 6 years that I had been with them. She suggested that she felt that she gave me good advice on diet and exercise. I pointed out that in fact their only input was a few clumsy attempts at reducing my testing regime. A situation which I would not accept under any circumstances. I went on to add that I did all of the groundwork as we all do as diabetics as it is very much a lifestyle issue and that their rather unhelpful attempts to reduce my blood testing equipment could only ever have a negative effect on my diabetic management. The proverbial bee that I have in my bonnet is that I have a doctor and nurse who on the face of it only have a basic understanding of my condition and absolute zero understanding of my own management regime on a daily and monthly basis attempting to make decisions on things that have the potential to dramatically negatively impact my life without a clinical reason. It is plainly wrong. Further, how can they review a condition on which I have to correct their own shortfalls?
 
This discussion is getting pretty depressing.I am so provoked by the referral to type one diabetics as just a small fraction etc. In my opinion, there should be focus on lifestylechanges and bs friendly nutrition for all type 2's.This can be completely be kept under control like this and it does not cost anything. Type 1, is on the other hand, a very different condition. Mostly diagnosed during childhood or young adults, it is something you have for many many years,not just as an adult, and it affects all areas of everything you do. The risk of hypos is very real, and this fear, is also easily confused in situation for just being nervous. Forexample at work, during exams, falling in love, getting married, and so on.The libre would help type 1's do things like work, and excersize in maybe not a better way, but they would benefit from reduced stress, and what does stress do? It increases the bloodsugar.However, type 2 need to check the bs too, with strips, if they are going to understand how food etc leads to increased bs. If they do not want to or care, that is a choice, but really, if people want to be responsible, why make it so difficult for them? Something is seriously wrong with this system.I am so for NHS and the american way is to me horrible and unfair, but something has to be changed. More tax? The NHS was not created for diabetes and other conditions that are for life, so the NHS has to somehow change, to become modern.Also there must be something positive to gain from wanting to be responsible.At the moment we are sort of paying for taking care of ourselves while those who do not care get the funding for taking care of sideeffects of not being responsible.
 


As type 1's, for the most part we are given the test equipment that we need to monitor and control our condition. A growing number of type 2's are sadly not afforded this metaphorical luxury. As type 1's we can not and should not expect preferential treatment to type 2's. The long term risk of severe complications are just as pertinent for all of us. Diet and exercise will of course have a positive affect for type 2's hut sadly not all of them. We cannot expect to provided with Libre's when there is such inequality in our relative conditions, all that notwithstanding, the Libre just ain't good enough for the NHS to accept it wholesale,
 
Just to be clear, yes EVERYBODY with any form of diabetes should get the test strips they need.And guidance in how to use them wisely to be able to learn from the reading. However, type one and type 2 are different, and living with type one IS different because the hypos actually can be dangerous.Insulin injections and no insulin injections are where I see a big difference.
 
There are plenty of T2s who have to take insulin, and plenty of T2s who have hypos.

I don't see there's much to be gained from a "Mine is worse than yours" contest - we're all in this together, and no particular diabetic group (1s, 1.5's, 2's and all the others) is being either well-served by the NHS (as demonstrated by this thread) or by such a divisive way of looking at things.
 
I spend a lot of my working life trying to understand why people don't look after themselves once they have a diagnosis of whatever condition or illness they have. It's not just diabetes, it's any long term condition. If you know you need a daily medication why don't you put the prescription in early not in on the day you need it? Most of us obey the rules but very few in my experience take the next step and actively try to manage and understand their illnesses. Health professionals deal with the majority who don't necessarily want to engage with their treatment - they just want someone to make it better. The posters on this site generally want to understand, manage and conquer their diabetes - in day to day life that makes us strange though not in the wrong! I am a T2 on insulin who low carbs, I pay for the libre because I want to understand what food and drink is doing to my body - for me the libre on the NHS would help me.reduce the risk of complications because I act on the trends. If the NHS had a way to work out who would use the new technology wisely and which patients actually manage their health and have become expert in their conditions and a way to record it then we would all be in a better place. They don't and as GPs move into larger groupings and more GPs start to work more part time hours then it's going to be harder and harder as a patient to form the type of one to one relationship that enables your GP or nurse to identify you as one of the few rather than as one of the many. I have signed the petition as a patient. Working in healthcare I cannot see that it would become commonplace though I am doing my bit in sharing my personal data with pharmacists and doctors so they can see it's potential. Most GPs and practice nurses won't even have seen one let alone the data it produces. It doesn't matter what type of diabetes you have or what long term condition you have we should all be promoting patients as experts and demonstrating through our actions the benefits of understanding and managing your condition and any technology that supports it.
 
I am sorry to come across like that, it is not better or worse. And I totally think anyone,whatever type, who actively takes an interest and try, should be rewarded by getting the tecnology that helps them. It is tricky to say exactly how a doctor or nurse (diabetic nurse has often the most one to one contact and in my experience sometimes more knowledge) could judge that a person is in that way, but it must be possible. The risk with the in some ways fragile new tecnology (because you really need to pay attention to how to use it and not loose them all the time etc that would be very very expensive) on NHS is somebody taking advantage or taking it for granted. This is a real thing with people not showing up for their appoinments etc so obviously tecnology can not just be handed out carelessly. However, I want to scream with the lack of up to date help when I see how it is now.We really could live such great lives with what is available.We should not have all the side effects today.I am so sad there are still amputations and blindness from this condition. Hope I make myself better understood.Sorry how I have come across. It comes from being a child nearly dead with this condition due to late and wrong diagnosis.It was not slowly making me worse due to a tired pancreas.There was no more insulin and is no moew.The reasons for type one are not well understood and it makes me frustrated that people think I made myself sick eating too much sugar. It was never how it happened.It just seems easier to be a type 2 but I am definitively wrong.Let me say it like this, as long as insulin is involved, type one or type two or 1,5 I think a Libre should be funded.
 
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