I have accessed this forum for one purpose. As a community we must ensure that Libre is available to all T1 patients (and possibly some T2) who would benefit from it. I have been living with T1 for 35 years and am a GP with a special interest in diabetes. I also worked in my local hospital diabetes clinic for 10 years helping patients with all types of diabetes. I did not think that Libre would help me as with finger prick testing my A1c has been below 45 for ever. I have used Libre now for 3 months and it is a life changing bit of kit. I am Clinical Lead for Diabetes in my local group of CCGs and would welcome any help in ensuring that the RMOC criteria which I think is a pragmatic way ahead are endorsed by CCGs and APCs. I am now feeling guilty that I have access to Libre which I fund myself and some of my patients who I know would be helped are denied access from the NHS. I look forward to hearing from you.
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Libre and Funding from CCGs
- Thread starter Bimjob
- Start date
- Status
Apologies,
The RMOC (Regional Medicines Optimisation Committees) criteria suggest a way to decide who would benefit from the use of Libre taking into account the cost. CCGs are Clinical Commisssioning Groups and APCs are Area Prescribing Committees). 🙂
The RMOC (Regional Medicines Optimisation Committees) criteria suggest a way to decide who would benefit from the use of Libre taking into account the cost. CCGs are Clinical Commisssioning Groups and APCs are Area Prescribing Committees). 🙂
stephknits
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi and welcome to the forum. It would be great if more people could access the libre. I certainly don't qualify, but would love to try one as I'm sure it would help me make oosposit changes to my management. How do you think we can work together to affect change?
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Well I don't personally see the prob with having to pay for them since they aren't actually essential and fine CGMs have always been able to give more help to those who can afford them (and they give any help to!) but at least these are lot cheaper than BG monitors were when you had to buy your own. You had to buy your own disposable syringes too, for years, if you wanted them. It's early days in the adoption of Libre anyway and inroads have already been made into the NHS and DVLA. These things always take time!
Why be impatient?
Why be impatient?
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
I self fund my Libre from the Gold Plated pension that being a GP then working in a government job got me. I don’t feel the slightest bit guilty about that, I’m saving NHS money. Gimme a medal. Though it does stick in the craw seeing Theresa May showing off her sensor and telling folk they’re available on the NHS. Aye, right.
What does bother me is the forward financial ignorance displayed by the multiple layers of committees that seem to decorate NHS England. The Libre by any calculation is cost neutral, and probably cheaper in the long game in reduction of diabetic complications. It supplies more information than any other means of management, including 6 monthly HbA1c measurement. As you know, that can cover a multitude of highs and hypos.
So that is your challenge. Convince the accountants that they have to spend money to save it. That may be a tad Keynesian for the idealogues who like nice shiny instant rewards, but it’s still true.
It’s what the NHS is for. Keeping folk fit and well to pay their taxes and National Insurance. A start could be made by making the Libre available to all T1 children.
As it happens, the very same kind of cost argument applies to prescription charges, as England stands valiantly alone in the UK still charging folk for being ill, but that’s a peripheral argument for another day.
What does bother me is the forward financial ignorance displayed by the multiple layers of committees that seem to decorate NHS England. The Libre by any calculation is cost neutral, and probably cheaper in the long game in reduction of diabetic complications. It supplies more information than any other means of management, including 6 monthly HbA1c measurement. As you know, that can cover a multitude of highs and hypos.
So that is your challenge. Convince the accountants that they have to spend money to save it. That may be a tad Keynesian for the idealogues who like nice shiny instant rewards, but it’s still true.
It’s what the NHS is for. Keeping folk fit and well to pay their taxes and National Insurance. A start could be made by making the Libre available to all T1 children.
As it happens, the very same kind of cost argument applies to prescription charges, as England stands valiantly alone in the UK still charging folk for being ill, but that’s a peripheral argument for another day.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
I remember decades ago being deeply shocked to discover my friend's mom - an asthma sufferer all her days and my second mom - had to pay for her prescriptions, well she bought a season ticket but good grief - she could die of what she'd got same as me. Only difference was she couldn't kill anyone else with her medication, could she? But I'm pretty sure she could have easily cost the NHS a lot more than she ever did had she not bothered to look after it - and OK she had the same incentive as me in that ie she'd be the only one to suffer if she didn't - but do I think it's fair? No - I don't, frankly.
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@Bimjob New national guidance is about to be released to widen the access to Libre from 3-4% to more like 25-30% of the T1 population. A lot of work had been going on relating to this by NHS England and Dr Partha Kar.
The money is independent of local CCG budgets, so there should be an end to the current postcode lottery based on local healthcare economy decision makers.
The criteria for who will qualify for funded Libre will be based on the early RMOC guidance, but with some significant changes. It should be released in the next few days and the funding is released in April this year.
The money is independent of local CCG budgets, so there should be an end to the current postcode lottery based on local healthcare economy decision makers.
The criteria for who will qualify for funded Libre will be based on the early RMOC guidance, but with some significant changes. It should be released in the next few days and the funding is released in April this year.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome @Bimjob. What is the probability of getting a GP with T1, who therefore understands how much work is involved in managing it effectively.
I am one of the fortunate ones who has the Libre on NHS. I use it effectively and the use of it enabled me to reduce my HbA1c from low 50s to low 40s.
If we classify the Libre as not essential, you could use the same argument and take us all back to mixed insulin rather than Basal/Bolus regime. However we know that that does not give any flexibility, and leads to poor management. The development of the Libre is another step forward in improving management, when used effectively, and in the long term the consequent reduction in developing related complications. The problem with target setting and the current funding system is that the focus is so much more on short term quick gains. As funding comes out of different pots for provision of prescriptions in primary care, as opposed to dealing with the long term complications of D in secondary care there seems to be little jioned our thinking. Having attended many meetings there seems to be a lot of focus on what appears to be improvements rather than what improves people’s living. (And don’t even mention the money wasted on writing their slogan on that bus!!!!)....... Grrrrrrrrrrrrrrr.
Now stepped off soapbox.
It is good to know that the access is to be increased, and that there are changes in the criteria coming soon. I hoe that the Libre becomes a more normal part of managing D, and is not just available to those that can afford it.
I am one of the fortunate ones who has the Libre on NHS. I use it effectively and the use of it enabled me to reduce my HbA1c from low 50s to low 40s.
If we classify the Libre as not essential, you could use the same argument and take us all back to mixed insulin rather than Basal/Bolus regime. However we know that that does not give any flexibility, and leads to poor management. The development of the Libre is another step forward in improving management, when used effectively, and in the long term the consequent reduction in developing related complications. The problem with target setting and the current funding system is that the focus is so much more on short term quick gains. As funding comes out of different pots for provision of prescriptions in primary care, as opposed to dealing with the long term complications of D in secondary care there seems to be little jioned our thinking. Having attended many meetings there seems to be a lot of focus on what appears to be improvements rather than what improves people’s living. (And don’t even mention the money wasted on writing their slogan on that bus!!!!)....... Grrrrrrrrrrrrrrr.
Now stepped off soapbox.
It is good to know that the access is to be increased, and that there are changes in the criteria coming soon. I hoe that the Libre becomes a more normal part of managing D, and is not just available to those that can afford it.
Robin
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- Type 1
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- She/Her
The thing that seems to have been totally overlooked on the list of criteria is a general mental well-being aspect. Our Oxfordshire criteria mentions 'severe anxiety around finger prick monitoring' but that’s not my problem. My anxiety was caused by not being able to monitor often enough and consistently enough to work out changing patterns, and adjust insulin appropriately. It used to take me about a week to test at different times and try and work out what was going on, and setting alarms in the middle of the night to test just disrupted my sleep patterns, (which were just getting back to normal after years of getting up to children or elderly parents in the night). It took self funding the Libre to discover that I had an erratic overnight pattern (which a swap from Lantus to Levemir eventually sorted out) and to be able to try different basal doses and timings, without it taking weeks to establish whether or not each change was effective. My head is in a much better place these days, but I currently wouldn’t fit any of the criteria for funding.
Thank you for all the replies. It is frustrating to listen to some of the arguements put forward against using the RMOC criteria. I'm not sure the money is actually separate to CCG budgets. The two arguements that I hear most are:
1. the funding will bankrupt the CCGs if RMOC criteria is used to decide who is funded for Libre. (short term thinking once again)
2. The APC has raised concerns about the safety of Libre.
The safety aspect is one I am probably not as well informed as I could be. I know when glucose levels are rapidly changing there could be a minor lag problem-but it is not a problem if you know how to deal with that. Are any of you aware of any other safety concerns-with evidence? I would not imagine that the device would be licensed without safety data being good.
1. the funding will bankrupt the CCGs if RMOC criteria is used to decide who is funded for Libre. (short term thinking once again)
2. The APC has raised concerns about the safety of Libre.
The safety aspect is one I am probably not as well informed as I could be. I know when glucose levels are rapidly changing there could be a minor lag problem-but it is not a problem if you know how to deal with that. Are any of you aware of any other safety concerns-with evidence? I would not imagine that the device would be licensed without safety data being good.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
What about when you use a Libre for 5 weeks solid* and what it says never reveals any 'patterns' or bears very much resemblance whatsoever to the person's BG meter - the one that is also the remote for her insulin pump? (* should have been six but I ripped the second one out on the bathroom door frame in our motorhome - that HURT! LOL)
It told me on a few days that I was hypo - down into the 1s at times - for several hours yet my BG meter said I was between 6 and about 8 constantly - and I never had a single hypo symptom for the simple reason I never was.
It told me sweet bugger all, frankly - hence no of course I don't regard it as essential and no I absolutely don't think anyone should drive without testing their BG - for which as far as I'm concerned - there is simply no substitute.
Nobody will ever know whether the thing actually works for them or not, though, unless they try it first - I accept that. But the NHS or Libre could gladly have my reader back if the want someone else to have it - although I'd think most people will wait now for the Libre 2, won't they? I do wonder if that might work better cos I hate basal testing and was dying to get it precisely for that so was severely annoyed when it didn't work.
It told me on a few days that I was hypo - down into the 1s at times - for several hours yet my BG meter said I was between 6 and about 8 constantly - and I never had a single hypo symptom for the simple reason I never was.
It told me sweet bugger all, frankly - hence no of course I don't regard it as essential and no I absolutely don't think anyone should drive without testing their BG - for which as far as I'm concerned - there is simply no substitute.
Nobody will ever know whether the thing actually works for them or not, though, unless they try it first - I accept that. But the NHS or Libre could gladly have my reader back if the want someone else to have it - although I'd think most people will wait now for the Libre 2, won't they? I do wonder if that might work better cos I hate basal testing and was dying to get it precisely for that so was severely annoyed when it didn't work.
Robin
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- Type 1
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- She/Her
I think that’s the main problem with the Libre. Anecdotally, on here, there have been people for whom it is always accurate (OK, it reads lower than my meter at the bottom end, and higher at the top, but mid range it’s spot on, and I can live very happily with that) and other people for whom it doesn’t seem to work at all.
Madeline
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- Relationship to Diabetes
- Type 2
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
We still do
And I still don't, either!
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
I note that the prescription charge is going up to £9 per item in April. The increase under this government since 2010 is 26%. Average earnings have increased by 16%. Benefits not at all.
So, in England, getting well is a choice. Eat, feed your children, heat your house, or pay the landlord. Or ask the pharmacist which treatment you can miss out on, which many prople do. Is this the mark of a civilised society?
Or move to Wales, Northern Ireland, or Scotland where housing is cheaper and you can get ill for free.
So, in England, getting well is a choice. Eat, feed your children, heat your house, or pay the landlord. Or ask the pharmacist which treatment you can miss out on, which many prople do. Is this the mark of a civilised society?
Or move to Wales, Northern Ireland, or Scotland where housing is cheaper and you can get ill for free.
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