NHS England director slams CCG excuses for lack of FreeStyle Libre access

[DCUK NewsBot]

Thousands of people with type 1 diabetes are being denied access the "life-changing" FreeStyle Libre because of where they live, a new report has found. The FreeStyle Libre system, which provides continuous glucose monitoring and enables fewer finger prick tests, was made available on the NHS a year ago. However, according to a BMJ investigation 25% of clinical commissioning groups (CCG) in England are not recommending the pioneering devices for those who are eligible. The information was gathered via a Freedom of Information request, which showed that only 3-5% of CCGs are making the technology available to people who are eligible. Dr Partha Kar, NHS England's associate national clinical director for diabetes, said that if official NHS England guidance was being followed properly, the figure of giving access to people should be closer to 20-25%, if not higher. He said: "I think some of it [CCGs' resistance] is financial, but also some people are just finding a reason to say no. One CCG said to me, 'We don’t think the evidence is there'. And I said, 'Well, how is the evidence there for London, Manchester, Liverpool, Brighton but not for you? How does that work?' That's just ridiculous." Emma Wilmot, a consultant diabetologist at University Hospitals of Derby and Burton NHS Foundation Trust, said: "I've had to say to patients, 'I’m really sorry, you don’t meet the criteria because your GP is not in the right area'. "They are absolutely gutted. I've had patients even considering moving [to another] GP a few miles down the road so that they'd be in Derbyshire and they'd meet the criteria." Wilmot said that a lot of her patients are being forced to make financial sacrifices in a bid to self-fund the device themselves. She added: "My worry is the people who aren't in a position to self-fund it. The most deprived people in the population often have the least access." The BMJ data showed that that the devices have been made available to hundreds of people via their GP in certain areas. But, there are a lot of CCGs that tell patients that the device can only be accessed by secondary care healthcare professionals.

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[Guzzler]

The NHS is national (the clue is in the title) therefore when the NHS says jump the CCGs should shout 'How high?' Instead of putting peoples lives and quality of life at risk.

 

[kitedoc]

But has the NHS evaluated the accuracy vs the utility of the Libre?

 

[tim2000s]

But has the NHS evaluated the accuracy vs the utility of the Libre?

You're falling in to the same trap that many CCGs do. Accuracy is not really all that important with Libre. What's important is the way it allows people to understand the way their glucose levels change. You don't need it to be "at point" accurate to do that. You just need it to be consistently inaccurate (which it usually is, like blood test strips). I'm not sure what you mean by utility in this case?

And in terms of outcomes, there are ongoing studies with patients within the NHS, especially Scotland, showing great results.

This is from the team in Edinburgh:

 

[Alison54321]

Just as well we didn't have CCGs in 1958 when polio and diptheria vaccines were introduced, they might have said no.

If CCGs had existed in 1967 we might still be in a situation where only married women got prescribed the pill.

They are holding back progress. They have failed the most important test of all, are they open to innovation. What is health care without innovation?

Interesting also, that in Edinburgh, despite Libre being offered to everyone on insulin the take up isn't that high. I suspect the cost of refusal, adding up the administrative cost of all those letters saying no, and all those papers that say no sent to committees, and all those meetings that say no, and handling all the complaints from people who want it, will actually end up being higher, than the cost of being generous, and saying yes.

 

[tim2000s]

Interesting also, that in Edinburgh, despite Libre being offered to everyone on insulin the take up isn't that high. I suspect the cost of refusal, adding up the administrative cost of all those letters saying no, and all those papers that say no sent to committees, and all those meetings that say no, and handling all the complaints from people who want it, will actually end up being higher, than the cost of being generous, and saying yes.

Not even that.

The cost of the RMOC providing guidance is one thing. The cost to the NHS of area level bodies that have no power then re-reviewing and restating that guidance, and then the CCG level bodies ignoring what the bodies that represent them have said and doing the work again is utter craziness and such an inordinate waste of money, it's not even funny.