Skip to main content

Reflections on a monumental week

This week was big - it was big because of the announcement from NHS England that the Freestyle Libre device would be prescribed across the country according to a common policy without CCGs being able to make up their own rules NHS England Announcement.  Is it a victory?  I'm not so sure - it should never have got to this point.  I hope the policy-makers both regionally and nationally come to acknowledge the reasons behind the situation and resolve to make changes to ensure that something similar doesn't happen again.  That will be the lasting legacy created by Partha Kar, Emma Wilmot and many others seen and unseen.

As mentioned elsewhere the starting point for the post-April 2019 prescribing is the RMOC Guidance .  This isn't the final criteria, but the assertion is that it will enable 20%-25% of T1s to get Libre on prescription - perhaps more, as suggested in this excellent blog piece by Tim Street.

So, why not all T1s?  Is 25% much too low?  Some people have become quite animated about this.  What I'd ask is for them to look at the data and see where it leads.  Is the conclusion that it's right to prescribe to all T1s?  Why stop there?  There are two main reasons that I believe the policy is both the only pragmatic way to achieve national funding and appropriate in this case.

  • It based on financial logic
  • It can be supported by clinical evidence
Where did the 8 tests come from?  The Pan Mersey Libre prescribing policy goes into it nicely:
The formatting went awry, the left column is for £13/50 strips and the right for £16/50.  

Average CCG test strip price does vary.  So the break even point is somewhere between seven and nine tests a day reduction.   I am hoping that the final policy allows specialists to make a judgement based on whether that number of tests is being done currently or has been done in the past if the person on Libre or another intervention and finally, most importantly, whether in their opinion there is a clinical need to test that often.

The other criteria like the second one dealing with pump avoidance are based on the limited clinical evidence out there and giving a cost saving justification for using that criteria.  It's not perfect, it won't please everyone, but it is the way it must be.  There is no blank cheque and where public funds are involved, I'm glad of that.

This is an edited response that I wrote to someone asking me about why there was a limit on prescribing:

RMOC gives us a chance to get some funding. I know a number that don't want Libre and have no interest. In the overall T1 population I estimate that at least 50% don't want it or don't have the skills to make use of it. To help validate that I intend to estimate the number that don't titrate (and therefore don't carb count) their own insulin. The nurse at my surgery a few years ago had never met someone that self dosed insulin or carb counted...I doubt that many of those patients want Libre and I expect the numbers to be significant. Social media active people with diabetes are far from typical...People that don't need Libre do need support, but why aren't people saying how come DAFNE access is so variable? Why do so many people have HbA1C in excess of 9%? There are many challenges in diabetes, but funding just one of many interventions for all doesn't seem right. 

On the Facebook group I help out on, someone wrote this nice analogy (I'll credit them if they wish, but it's a private group, so won't without permission):

Finger prick testing is like trying to drive a car and only being able to see out of your side windows... You're inevitably going to crash and drop off stuff unless you creep along at a snail's pace which is not realistic in our hectic world! Having the Libre is like driving and being able to see where you're going and where you've been, in other words drive safely! Continuous glucose monitoring is having the added bonus of parking sensors!
I see that logic, but I think it's worth extending the analogy to cover my point above.

Whilst the windows might be clear and you can see out, many people don't know what they're looking at or what they should do about what they can see - and some would rather not look out the window at all as it's rather scary and confusing, or of no interest to them.  They also don't want to ask someone for advice or can't find someone to ask and certainly haven't read the manual.  As a crash hasn't happened before and doesn't seem likely currently, they conclude that it won't happen in the future as well, so there's nothing to worry about.

A crude analogy, but I think it helps to understand Libre and the challenges of widespread prescribing.

Libre is the answer for some, but certainly not all and to suggest it should be blanket prescribed is throwing money away when there's no justification and potentially wasting limited resources. It'll be over £5m a year to fund the 25%. How much of that will be saved through better outcomes and lower strip usage is unknown. The NHS won't spend that sort of money without evidence.. And I'm glad of that. 

It's very frustrating that a few think that somehow the announcement made yesterday is wrong and inappropriate. We're going from a point of around 2.5% prescribed and a postcode lottery to 25%+ and no postcode lottery.  We need to keep debating this but a starting point of 100% is not realistic.

People are losing their rag, when actually all that has been said is that the final criteria will be based on RMOC. There's no mention of paediatrics, there's no mention of how much discretion specialists are able to use, there's no mention of how the sensors will be dispensed. The reason for that? It has yet to be decided. I am hoping to influence the final policy, to make it the best it can be. But if people are starting from a point where they say it's rubbish/stupid/unfair that Libre is prescribed in a limited way, I'd suggest we're going to struggle. Starting from a point of making sure the criteria enables as many as possible to get it that can benefit whilst ensuring waste is kept to a minimum is the only rational way that will work.

If Partha Kar had suggested that his target was to get every T1 (or T2 on insulin?) Libre funded, we'd be stuck forever at a few percent getting it and an ongoing postcode lottery. At least now, we have a starting point to build proper scientific evidence and take prescribing from a few thousand a month, to nearly 80k people getting funded Libre.

And by the way. I don't expect to meet the criteria and I think that's right and fair.

As mentioned in part above, I also believe some areas of the RMOC need addressing as they are too vague to enable national prescribing whilst removing variance and also some areas are not fully addressed at all.  These include:

  • Paediatric prescribing (I'm not sure 8+ is the right figure here, despite the cost logic).
  • Co-morbidities (secondary conditions that have an impact on the primary) - how do specialists deal with these?
  • Dispensing of prescriptions - is this going to be defined or can some stick to the (in my opinion) illogical and sub-optimal prescribing via hospital pharmacies only.
  • How is 8+ tests being judged?  Can specialists use their judgement? 
This list will increase, but I feel it important that the debate is continued to ensure that all stakeholders have a chance to mould the final policy and its implementation.  People living with diabetes (PWD) and working in the front line of diabetes care are the best people to decide that, not CCG governors.  This is the real progress from the announcement on World Diabetes Day.

People ask, rightly, why Libre? Why not Dexcom?  Some of that is due to Dexcom being a pure CGM and Libre not.  CGM has a different pathway.  It is another postcode lottery.  It is my belief that the current work around Libre and its pathway will result in the CGM pathway also being clarified and made national.  To me, Dexcom is far too expensive, if used as per the label - the NHS would have to calculate its costs based on those figures.

So, a brilliant week for supporters of Libre, but there is plenty still to do.  Patients are involved like never before and we need to make sure our voices continue to be heard.

"Everyone's second favourite Libre-prescribing-data-muncher and errant CCG's worst nightmare"


Joe said…
Glad to see someone sticking their neck out and stating some unpopular truths.
Libre is a fantastic device but it does need work, experience, intelligence and some downright common sense to get the best out of it.
Like a car, it can be downright dangerous without the necessary guidance to use it “properly”.
Unfortunately even the driving instructors, the medics, really do not have the needed experience and the personal drive to get it.
Currently the best guidance is in the hands of a few dedicated enthusiasts.
Perhaps a better analogue is not driving but flying - back in 1910 - perhaps by now 1920.
We learn by trial and error. We learn best by making mistakes. And sometimes we crash.
Joe said…
And also good to see that you at least mention the Elephant in the room - T2 (and all the rest)

Popular posts from this blog

The CCG Project!

In order to find out the situation around the country for Libre prescribing now that the national policy has been published, I have made the decision to contact many of them to find out their plans.  I have arbitrarily chosen to contact all English CCGs that in December 2018 prescribed Libre via Primary Care to less than 5% of their population (and one specific request from a group member).  I had hoped this would be a small list, but there are 135 CCGs on the list.  I may have bitten off more than I can chew, but I'm committed to doing this and feeding back.  It worked before and hopefully this level of scrutiny will bring similar results. Below is a screenshot of the base document I am sending to each of the CCGs - it has some fields that are merge fields, so don't worry about the brackets and codes in the document (I found a typo, which has now been corrected too) .  The major piece of work with respect to this is finding the right person to contact.  However, I have s

Finally an Update!

So, I have finally got the motivation to update my blog. There's probably nobody reading it anymore, but just in goes. What has been happening? Well, I am still honeymooning in terms of my diabetes, so need less insulin than previously. It is proving a bit difficult to judge and I had a bad hypo last week. Basically, I was almost unconscious and Claire had gone out for the evening! Luckily I found some wine gums and came out of it eventually. Last weekend was Josh's thanksgiving. Our church doesn't really approve of christenings of babies whose parents are not both confirmed. As neither of us are, then a thanksgiving was the choice. It turned out to be a lovely service and the small group of people that we had meant that it was a great day. The sun even shone for most of it. This weekend is the Open Day at work. I have helped organise it, including getting a person to create a special newspaper for the day and be there to add pictures and make a live n

August Libre Update - Data, data and more data!

This month's update will be dealt with in two parts, both focusing on data; the first part summarising some data about the prescribing policies across England, the second my usual update on prescriptions fulfilled across the UK. Libre Prescribing Policies and Implementation in England There didn't seem to be an easy way to compile this.  I used the Diabetes UK Map  to link to the policies and then I cross-checked this with a Google search to see whether there was any more information.  I had to do this line by line for each of the 195 CCGs in England - quite a lengthy and tedious process.  However, I am pleased with the information arising from the data. Firstly, the headline figures - how many CCGs were funding Libre, how many had denied funding and who were still undecided?  There are differences of opinion about these figures as some CCGs have not been clear (Staffordshire CCGs), and some have agreed to fund, but are yet to actually fund due to implementation difficulti