Not So NICE? Doctors Debate Point of Type 1 Diabetes Guidelines

March 09, 2016

GLASGOW, Scotland — A lively debate on the relevance of recent guidelines on type 1 diabetes from the UK health watchdog, the National Institute for Health and Care Excellence (NICE) ensued last week at the Diabetes UK 2016 Professional Conference.

The crux of the matter, argued Partha Kar, MBBS, MD, MRCP, clinical director of diabetes, Portsmouth Hospitals NHS Trust, United Kingdom, is that due to financial constraints in the National Health Service (NHS), it is virtually impossible for doctors to provide type 1 diabetes patients with the kind of services that NICE says they should be receiving.

"These are very difficult times, we are struggling and battling; diabetes is dropping as a priority," he told the audience in a talk entitled: "NICE guidelines, type 1 diabetes: A utopian fantasy."

He urged NICE to play a much bigger role in ensuring that the recommendations it makes can be realized. "You have a strong voice…use it. You need to help us on the ground if we want to improve care."

Dr Kar is an outspoken, passionate advocate for patients: "Unless you live with type 1 diabetes you are not the expert. The best we [healthcare professionals] can be is 'specialists,' " he asserted.

He is very active on Twitter and, it's fair to say, is viewed as somewhat controversial by some of the UK diabetes establishment, as evidenced by one of the session chair's comments that he might need "an IV line of vodka" to be able to listen to Dr Kar's talk.

NICE released its newest guidelines on type 1 diabetes in August 2015, more than 10 years after the previous ones, which were issued in 2004.

Chair of the panel for the 2015 guidelines, Stephanie Amiel, FRCP, professor of diabetic medicine at King's College London, was visibly frustrated by Dr Kar's talk; during the Q&A session, she told him: "I think you are being very unfair in blaming NICE."

"The motivation for those of us sitting around the table — we are not NICE, we are your colleagues, some of us sitting here, and your patients — [is that] we wanted to make it clear what care patients should expect…what the evidence base says we should be doing. That is NICE's job, its remit," Dr Amiel stressed.

And Mike Kendall, who was one of the type 1 diabetes patient representatives for the NICE 2015 guidelines, also staunchly defended them: "I want to know what I should work toward. As aspirational as that might be, and as full of 'la-la land' as it might feel to the people in the cold reality of the NHS today, it offers promise," he told Dr Kar.

Will a New Document Make Any Difference?

Dr Kar did preface his talk by stating, "This is not about criticizing NICE," and he stressed that he thought the panel on type 1 diabetes "had done a great job. But it's our tax money [that funds NICE] — would you want to use it somewhere else?"

He questioned the point of the latest guidance, when many of the recommendations made more than a decade ago, back in 2004, are still unattainable for most patients.

"So why do we need a new document? Will another one make it better? Do they actually do anything to improve care or change practice? If the last [NICE guidance]…didn't galvanize healthcare professionals to get care better, why would this one?"

For example, in 2004, NICE recommended psychological counseling be made available for all patients, and it restressed this last year, but "we have struggled lock, stock, and barrel to get any traction" with this, he observed.

Another 2015 NICE recommendation — that all adults with type 1 diabetes should be offered a structured education program of proven benefit, such as Dose Adjustment For Normal Eating (DAFNE) — is also pie in the sky, Dr Kar said, noting that the recent National Diabetes Audit indicates only 6% of type 1 diabetes patients are attending such courses.

"We would like you [NICE] to commission DAFNE everywhere: you can't play halfway house. You are part of the system; you can call yourself an arms-length body, but right pocket, left pocket, it's the same trousers," he observed.

Just 30% of Adults With Type 1 Reaching Target HbA1c of 6.5%

Dr Kar went on to note that overall, just under 30% of adults with type 1 diabetes are meeting the target 2015 NICE recommendation of an HbA1c of 6.5%, according to the latest audit figures.

Another bugbear surrounds the NICE advice to support adults to test their blood glucose up to four times a day and up to 10 times a day under certain circumstances, and the statement that 'savings can be made if you give people strips.'

 
Type 1 patients getting four strips every day exist in the world of Narnia, not in the NHS.
 

"I'd like to welcome you to the real world where lots of type 1 diabetes patients don't get strips. Type 1 patients getting four strips every day exist in the world of Narnia, not in the NHS," Dr Kar said, although he acknowledged that circumstances might differ in different geographical areas.

"With great power comes great responsibility. If you say we need something, you need to back us. We are not getting that backing from anybody because [NICE] is an arm's-length body."

And advice on assessing hypoglycemia risk, whereby NICE recommends using the Gold score (Diabetes Care. 1994;17:697-703), is a moot point, he said, because "most of us don't even know what the Gold score is, and we don't use it," he lamented.

A show of hands in the audience indicated that this was indeed the case.

"Who is educating healthcare professionals on these scores? Is it available online, and can you Google it?

"We are super specialists; I know what the Gold score is, but are the majority of type 1 patients in the hospital? Or are they in the community? These are the things to think about."

Dr Kar did, however, finally have some good words to say about one of the NICE 2015 recommendations, on the subject of insulin therapy.

This, he noted, "has been a major step forward…the number of patients we've seen moving to 'basal-bolus' based on patient choice is the right approach."

"Join the Implementation Committee"

During her equally passionate response to Dr Kar, Dr Amiel said: "NICE just says this is what the evidence shows, it's out there in black and white, and it's up to us to fight to reorganize ourselves to be able to provide it.

"It is for us [as clinicians] to make the fuss that we are making to say 'NICE has said that this is what we need, therefore we need the resources to do it,' " she urged.

"We understand we have to do that with a restricted-resource health service, that we have to look at what we can stop doing and what we can move to, but I don't quite understand why you think NICE shouldn't have put out there what we should be aspiring to," she told Dr Kar.

And actually "some patients do get access to the sorts of things NICE is saying they should have access to…and the reason I volunteered for this unenviable position was to make it clear that every person with diabetes should have access to those services," she asserted.

She also invited Dr Kar to put his words into action: "NICE has an implementation committee…join us! We advertised quite recently."

Dr Kar wondered when he might do that: "In the 25th hour of my day?"

"I Don't Want to Know What's Easy. I Want to Know What Works"

NICE panel patient representative Mr Kendall then proceeded to describe his stance, also outlined in a BMJ blog post last September, while acknowledging, "I am not your blog-standard patient."

Recalling the day he was diagnosed with type 1 diabetes 25 years ago, aged 21 — when he was told that he should finger-prick to obtain blood for glucose testing at the side of his finger rather than on the pad, "because when you go blind you will need the pads of your fingers to read Braille with" — he gave the audience pause for thought.

"You should know that it was not the clinicians who really banged the table for [the 'target' NICE recommendation of HbA1c of] 6.5%, it was one of the patient reps, it was me! I stand by that as a patient."

"I don't want to know what's easy. I want to know what works…and what I should work toward. The questions I want to be asked from your side of the table are, 'How do you feel about your HbA1c, are you happy with it?'

"Do you want me to help you to get it lower? Or are you fine? Do you want me to tell you what it means about the likelihood of your feet falling off and going blind?

"I don't want to be compelled to do anything, it's not your job to insist that I do anything," he told the assembled healthcare professionals. "I like being given strategies, a flexible approach, and targets.

"I want a big weighty document that I can have access to through the internet that I can look at, and show to my doctor — that says two to three strips a day costs more money" but otherwise "I will be in and out of A&E [emergency room] the whole time. I need six, I need eight — I need 10 strips [a day]."

"This document says it works," he concluded.

Dr Kar is on Twitter @parthaskar and has a blog (nhssugardoc.blogspot.co.uk). Mr Kendall is on Twitter @everydayupsdwns and also has a blog (everydayupsanddowns.co.uk).

Diabetes UK 2016 Professional Conference; March 3, 2016; Glasgow, Scotland.

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