I’m off to Westminster on Wednesday, 25 April to attend the JDRF Type 1 Parliament event. Everyone’s second favourite pump company Animas are one of the co-sponsors of the event and emailed to see if I wanted to attend as their guest. In exchange for my train fare and a bed for the night, I said I’d love to head off to sunny London to do a bit of lobbying.
Sixty-something type 1’s will be at the Houses of Parliament to start the day by explaining the realities of diabetes to their local MP, in a bid to get them motivated around moving diabetes up the political agenda. Following that, it’s question time with a panel of the great and the good of politics and diabetes, including the Minister of State for Science and an assortment of medical bods. They’ll be taking questions on all aspects of Type 1 – from insulin pump availability, to where research should be focussed, to the need to provide improved psychological support and beyond.
I’m planning to ask how the panel thinks we can best improve take up of new treatments such as insulin pumps and CGM, which all too often are invented and then left sitting on the shelf, inaccessible to the majority of people. If you’ve got a question you’d like me to ask, leave me a comment and I’ll be your mouthpiece for the day.
Perfect timing. Does this mean you can now gain expenses funding for a duck house?
Here’s an excerpt from an email to my Rt Hon MP yesterday:
——
I’ve become aware that the under the NICE HTA
(http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4138033) there is a legal obligation on Primary Care Trusts to provide a Structured Educational Programme. Examples of what this education can be are shown on the NHS Diabetes website
http://www.diabetes.nhs.uk/areas_of_care/education.
I am aware that the Hospital A provides the DAFNE
course but this is not available for Area B patients.
The Primary Care Trust B is obliged to provide a similar level of support to Type 1 diabetic patients but at this time does not do this.
——
Something similar to provide a push on PCTs to provide a DAFNE equivalent to all would be appreciated.
Thanks and enjoy your day with the noble gents and ladies.
That’s a nice meaty topic, I’ll add it to my question list, thanks Dave.
The duck house is on hold until we’ve got the moat fully dredged, I find it best to spread the costs when fiddling the books, makes things less obvious.
Hope it goes well Alison. One area for research/regulatory tighening I would like to see is the accuracy of BG meters. Dave and I have both recently been given a shiny new one, but neither of us are now using it because we found the results it gave hopelessly (and potentially dangerously) inaccurate. Results that meet all regulatory guidelines for accuracy. At a time when the DVLA are getting itchy about the precise ins-and-outs of BG levels it would be *nice* if those results bore some sort of relation to what had actually happened.
Oh, and it would probably make the day to day business of playing pancreas a little easier too.
So are there some specified accuracy ranges for meters the control fluid always seams to have a VERY wide range, I mean 2.6 – 4.3 (+or- 0.9) is anywhere between Hypo and Ok, and 7.3 – 9.9 (+/- 1.3) is anywhere between good and higher than one would like….. So its +/- 1 mmol/l on control fluid and that’s not given variation in blood sugar round the body, sugary hands, wet hands etc etc
I always rounded to the nearest whole mmol and ignore anything after the decimal point.
But when they want us to have tighter and tighter control it means that the machines are not accurate enough to achieve that level of control!
The meters are no better than what we could achieve with our eyes and a tube of test strips!
So in short is there some required accuracy in Blood Test Meters or something.
Maybe this should be a question for the experts not MPs.
But maybe we need regulation on the accuracy partially if they have legal standing for the DVLA etc.
@peterchilds According to ISO15197 the required level of accuracy for BG meters is +/-20% against lab results 95% of the time. So the very best they need to aim for is that a lab reading of 7.0 would show as somewhere between 5.6 and 8.4. And 5 times out of 100 it could be much worse. in other words testing at 5.6 and then 8.4 just 5 minutes apart using the same meter with the same pot of strips (or even seconds apart from the same drop of blood!) would pass the International Standards Organisation criteria for accuracy.
Similarly under the requirements 3.2 and 4.8 could be identical readings (from a lab test of 4.0). Fortunately most meters far exceed the required level of accuracy.
But as for the requirements…Good enough? No I don’t think so really.
Something along the lines of ‘Why cant we have a specific line from doctors/pharmacists on repeat prescriptions (eg for strips)’? Rather than letting each one do their own thing, pushed by the manufacturers. I went to pick up my prescription for 4 boxes of strips, the pharmacist said ‘Oh, we’ve got some new meters in that we’re giving everyone, here’ Me: ‘No thanks, I have to use the one I have as it links to my meter.’ Her: ‘Oh. Well I’ll have to order your strips in then because we thought you would move to this new one. They’ll be a few days.’ Since when have Big Pharma been allowed to dictate what strips I use?
That’s the chemist/pharmacist involved trying to keep stock lines lean – they pay for the inventory sitting on the shelves, not the manufacturers.
Only time manufacturers do that is when they remove a product for safety concerns or stop manufacture (& they have to have a phase out period)
I would have though if your prescription says X and they give you Y its dangerous and wrong.
I’ve never been offered meters by the pharmacist only by the DSN teams or when I’ve been bothered to do my own research.
My pharmacy does not keep any of my strips on the shelves. They order them only when I need them. And then they get a manufacturer saying ‘here, have these free meters and a whole load of free strips, just change everyone (that’s what I was told they were told to do).
So by undercutting the manufacturer of the strips I have to use (cos of my pump/meter combo), in my opinion, Big Pharma are attempting to dictate what strips I use.
Thanks for these. I very much doubt I’ll be able to ask them all, but I will take a list of all of them, keep an ear out for what the answers are if other people ask a similar question and will focus on asking the ones that don’t get asked by others.
Keep your eyes peeled for a blog post on the main points of the debate when I get back.
Thanks for these. I very much doubt I’ll be able to ask them all, but I will take a list of all of them, keep an ear out for what the answers are if other people ask a similar question and will focus on asking the ones that don’t get asked by others.
Keep your eyes peeled for a blog post on the main points of the debate when I get back.
Really lovely to meet you Alison, are you as knackered as I am? Really good day guys, will update fully + bore you with some pictures when I’ve caught up on sleep (it was a 5.30am alarm this morning) 🙂 xx
It was lovely to meet you too Lauren, so nice to walk into a pub and get such an enthusiastic welcome! I was indeed knackered last night, great day though.