Wednesday, November 1, 2017

Respair



Respair. Ever heard of that term? Its something from the 15th century to be fair. It means "Fresh Hope..or a recovery from despair". And I feel a bit of that today. 1st November 2017. A couple of things happened today- and am also going to use this blog to answer a few queries.

Well- what did happen was that Freestyle Libre got on the NHS Tariff. We started this year with me being roundly told it was impossible to get this to tariff- but with help from some tenacious allies of different quarters, we are here. Along with it, NHS England- via their Regional Medicine Optimisations Committee got guidelines out today to make sure we can try and reduce variation (so have Wales!) …so you see…respair it indeed is today. Most folks probably won't get it- but this is a big deal what so many have worked together to achieve- many years back,we made one big step of moving from urine dip to finger prick testing. Now we make the next one to go to non-invasive one- of course we have had Continuous Glucose monitoring systems- but the high cost of them have made it prohibitive for many, caused countless battles, much angst- though understandably the purists love it. However, at scale? At a population level? This is a big step change. Respair it indeed is.

So now to answer some queries- as there is only so much one can do on twitter. Some believe I have pushed for Libre -perhaps because I have "shares" in the company or something along those lines. No- I don't- and give me some credit-if I was, I wouldn't be doing it so openly. I may not be the brightest tool in the box- but not that stupid either. To clarify? I would do exactly the same for any diabetes innovation. You are very welcome to ask other relevant Tech companies such as Roche, Medtronic or Dexcom about my open interactions with them- and what we are trying  to do to improve access.

Second group have been a few academics- perhaps upset that they haven't been involved hugely- or their pure academic view of the world of Type 1 diabetes doesn't match mine. Or that they could have done with more money to conduct more RCTs while the population waited. Lets put it this way, I do consult academics- when i have Professor Stephanie Amiel, Pratik Chaudhury or Simon Heller to fall back on for advice and direction, I strongly feel that the bases are covered. Maybe best trying to emulate them, their work, their ethos- and then try & engage again.

Next comes some medicine management groups saying "What about NICE?". Well, this is an innovative way of doing glucose monitoring- plus the guidelines set are looking at cost neutrality (This is NOT being placed as something for everybody with diabetes)- whether it be by strip numbers or reduction of DKA admissions-plus timelines about stopping if it doesn't work/help. National level data will be collected for this- and we will reassess. 
I have also been told that you don't need to have anything to do with Type 1 diabetes to make a judgement whether patents should have this or not. 
Let me tell you my response to that- politely.

Its that sort of lazy-arsed bone-idle nonsense that led to many systems not recognising hospitals needed inpatient diabetes cover- resulting in enough harm. Much data and campaigning later, things have improved a bit. Why? Because those who live with diabetes or care for it- were ignored roundly. 
And perhaps this is where I disagree with some. I spent many years in meetings listening to people acting as self appointed vanguards, paying lip service about "involving patients" and swore that if I ever get in any position worth its salt, that won't happen. So yup, on my watch? We listen to patient needs and work with all to make it happen. Period. You want to improve outcomes? You listen to those living with it. If you don't believe in that, you are- categorically-in the wrong job.

To add- to areas which say NICE haven't approved- I will have a couple of questions for you. Fair enough- don't give access to Libre. BUT- have you given Pumps & CGM to your local population as NICE have said or have you used NICE as a convenient excuse when needed? Have you used drug prescribing as per NICE guidelines? Have you given Type 1 patients access to 6-10 strips..or have you said- "But its just a guide?"
So, to the minority- and I must stress- the detractors have been that- read the RMOC guidelines- and see which group of patients may benefit from it. As an added open offer, you want me to come to your CCG and take questions? Go on- am right here- I will come with my questions too. I will come also with the Right Care Pathway to find out if it has been adopted- and if not, why not. Savings and all that.

Finally, there's one thing those who are close to me know well- but for those who aren't- here you go. I have many flaws- I mean many, many flaws. A sizzling temper, an ego the size of a planet, a very open "No suffering fools gladly" persona…but what I do have? Is tenacity to finish what I started. Freestyle Libre is the start- there's plenty of technology around the corner to pick the cudgels up for too. 
I will finish this blog by thanking all the patient charities, specialist organisations, NHS England, NICE, NHSBSA, DH…all of whom have been absolutely amazing in their help. We are -hopefully-at a new dawn. Type 1 diabetes care- its about time we got up to speed- and fingers crossed, we can take the next necessary steps. The whole community needs a bit of Respair- and as long as I do this role? 
Will give it one heck of a shot. Lets see where it takes us.

13 comments:

  1. Dear Partha,

    Thank you ever so much for all your hard work and dedication on this. It's so important to try to see things from the patients' perspective, and the very best physicians are naturals at this. For me this didn't come immediately on graduation as a medic, but has developed steadily over the years and is something I always try to impart to the next generation, as you do.

    CGM, and equally of course the education to understand how to make the most of it, will undeniably transform diabetes self-management.

    The instant feedback after food choices, and self-education to get the timing and bolus doses right is simply amazing. The trending information is as useful as the actual BG number. Seeing the effect of exercise, or more particularly the lack of it is a great motivator. And CGM provides such an important safety net for the times when things don't go as predicted.

    I'm sure that in a few years time CGM use will become routine and we'll all wonder how we coped without it.

    With very best wishes,

    Ian

    Dr Ian Paterson
    Sheffield

    (Dexcom user, but no conflicts of interest)

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    1. Thank you for the kind words- hope we can keep pushing the technology side of things!

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  2. I wish people in similar positions to you were as tenacious as you. Thanks for being in our corner.

    Nick.

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    Replies
    1. Thank you- and a pleasure. It indeed is my job though!

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  3. Continuing to be inspired by you.....

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  4. You've done and still are doing an amazing job and please don't let any pessimists put you off this important work. We're impatient, yes, as many of us have been self funding the Libre for a few years and have struggled financially because of it but I'm happy to be patient and hope that my CCG, along with all the others, will make informed decisions regarding this amazing piece of technology.

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    ReplyDelete