Oh, you cannot be serious! This is not NICE

[davidgillon]

NICE, who set the clinical standards for treatment in the UK, just released their draft guidelines on treatment of chronic pain.

It basically rules out all painkillers, from NSAIDs to Opiods, along with almost every other treatment modality except for talking therapies, exercise, and acupuncture - and only if they're less than 5 hours and delivered by a junior healthcare worker - nurse-practitioner/specialist physio or under. The only drugs permitted are a limited number of anti-depressants. Even the gabapentinoids, which were previously considered a wonder drug for being effective on neuro pain and not opioids, are banned, with apparently the sole justification that they're abused by other people. Even TENS machines are banned.

The guidelines are supposed to be evidence based, but most of the 'evidence' seems to be 'we don't have any evidence'.

It's supposed to only apply to chronic primary pain, which is where there is no direct cause, rather than chronic secondary pain where there is, but my experience is even specialist pain management professionals have difficult distinguishing between the two, so you've got no hope of GPs managing it, and given the time to diagnosis in the case of some of the pain-causing disabilities is significantly over a decade there are going to be tons of people caught in a situation where they are wrongly considered to be in the primary pain group.

I'm going to have to dig into the diagnoses, because AFAICS, neuroplastic remodelling, where the nervous system rewires itself to be hair-triggered to pain, is likely to fall into chronic primary pain, and only way you're going to get talking therapies to affect that is magical thinking, which is a psychological condition, not a psychological treatment.

To make matters worse it was initially announced as having a public consultation period running from today until the 14th, which is completely inadequate when they have 2686 pages of documentation. Actually more than 2686 as there's an 'economic justification' you have to sign an NDA to see. They quietly changed it to 14th September after I started banging on about it on their social media and linking in disability journos. I hope it was an error, but I wouldn't guarantee it. And no idea how I'm supposed to respond to a public consultation over something I have to sign an NDA to see.

Grrr....

Comments

[redbird]

I'd start with a public comment saying "NICE is unwilling or unable to present any evidence for its recommendations. In particular, the so-called 'economic justification' is something that they are afraid to present to public scrutiny. I assume the NDA is designed to stop the public from pointing out that the emperor has no clothes."

[davidgillon]

There's a lot of it about ;)

And yeah, that.

The justification for the NDA is that it might contain commercially sensitive information. But when they're basically talking about doing nothing, it's really difficult to see how it can be commercially sensitive.

[havocthecat]

...doing nothing might tank their sales?

[hilarita]

I saw on Twitter. I'm glad they extended the review period; over two and a half thousand pages in less than two weeks is totally unreasonable. And I agree with you that it's immensely poor practice to have parts of the public consultation hidden behind an NDA.

That's leaving aside the malpractice they're proposing. I thought that mostly people prescribed opiates tended not to abuse them (unless they were unfortunate enough to get prescribed whichever scam opioid was produced by the Sackler family, where dosage/delivery problems tended to mean you got terrible withdrawal symptoms when on the approved dose), and that the primary problem was illegal use. In either case, legalising drug use and providing actual useful addiction services seem like a rather better use of money than telling people that positive thinking will make their pain go away. (Also making sure that people with injuries get physio quickly before their brains rewire to be hyper-pain-sensitive...) Also, investing in primary care, so your GP actually has time to talk to you properly, perhaps via phone/video call, to monitor usage. And so that you actually have *a* GP, one you see regularly, so you can build up a therapeutic relationship, rather than have a dismal experience of going, "No, I'm not a drug addict and if I were you'd still be treating me appallingly" every time you need a repeat.

Yeah. Turns out I'm quite cross about it too.

[sovay]

I thought that

I kept excerpting and +1-ing lines from this paragraph of yours, so I'm just going to +1 the whole thing.

[davidgillon]

While you do occasionally hear of people with chronic pain becoming addicted, being able to tell pretty much means they were on the wrong dosage as most chronic pain patients are going to be on a stable or increasing dosage and you would only see it on a decreasing one. And it doesn't explain banning the gabapentoids, where I've never heard of a single case of abuse within the chronic pain community. Their sole justification for that seems to be that they got raised to Schedule C because of street level abuse - which directly implies we're all drug-seeking addicts.

Banning the NSAIDS, and even paracetamol, when the cost is trivial and their use well established as low risk just seems petty.

[sovay]

It basically rules out all painkillers, from NSAIDs to Opiods, along with almost every other treatment modality except for talking therapies, exercise, and acupuncture - and only if they're less than 5 hours and delivered by a junior healthcare worker - nurse-practitioner/specialist physio or under.

What the fuck.

That is best practice for creating a population of people with unmanageable, unremitting pain and no legal recourse for dealing with it. What is the economic justification, die and decrease the surplus population?

Let me know if I can do anything to be useful, even if it's just being second eyes on a letter to the press.

[capri0mni]

That is best practice for creating a population of people with unmanageable, unremitting pain and no legal recourse for dealing with it. What is the economic justification, die and decrease the surplus population?

That's exactly where my mind is going -- and particularly darkly: make life so unbearable with pain and (supposedly) "no treatment available" that people are driven to suicide. That way, it's their own "misguided choice" (And proof that they were mentally ill, and really needed the talk therapy and antidepressants, after all, as a defense against medical malpractice).

[davidgillon]

Thanks. At least one fairly prominent activist has suggested increasing the suicide rate is the intended result. I'm not quite that cynical. I look at the fact that this is a review led by a psychiatrist and draw my cynical conclusion that when your only tool is a hammer, every problem looks like a nail.

I may pitch an article to the Guardian rather than writing a letter.

[sovay]

I may pitch an article to the Guardian rather than writing a letter.

That sounds like a good idea.

[cesy]

That is terrifying. Do you have a link handy? I don't have energy to fight this myself but will ask family and friends.

[davidgillon]

https://www.nice.org.uk/news/article/commonly-used-treatments-for-chronic-pain-can-do-more-harm-than-good-and-should-not-be-used-says-nice-in-draft-guidance

Thanks.

[alexseanchai]

they're banning all painkillers for chronic pain

I

no

[davidgillon]

Yep. That.

[vass]

I have nothing but screaming.

[davidgillon]

There's a lot of it about right now.

[hairyears]

Yes, this is one for a media campaign.

My advice is: use the effects - especially on elderly affluent Telegraph-reading Conservative voters, but don't call them that - to get the clicks, but make damn' sure that you identify and attack the underlying agenda, because this policy shift will surely be supported by mass-media and social-media campaigns to trivialise or 'other' the chronically-ill.

Also: play the man, as well as the ball. This has the smell of American Christian Fundamentalists, and a whiff of bringing the NHS into line their health insurance practices.

However, the latter point is effectively discredited before you even touch the keyboard: someone has done the social media groundwork already, so that is dismissed as 'another NHS privatisation scare story' in the same tenth of a second it takes to dismiss an advertising popup.

Whatever: this new policy marks the ascendence of dangerous psychopaths in NICE. I see a hint of it in the new target-based guidelines for Asthma treatment, but this new policy on chronic pain is unmistakably the mark of a benign organisation becoming actively malignant.

[davidgillon]

One of the other disability activists has been doing the rounds of the media today in order to flag up what this really means (Mik Scarlet, and as he's an ex-presenter he's got far better contacts than I have).

It strikes me that this is another PACE fiasco in the making. We have a psych-led team proposing to treat a physical ailment with talking therapies. The difference this time is that PACE had data that could be used to show its conclusions were wrong (once the courts forced their release), while this is explicitly using "there is no data" as its argument.

My current thoughts are that chronic primary pain is a diagnosis of exclusion, which means you have to do the excluding before you can label someone with it. So we can show the weakness in the proposals by asking how they propose to treat people in the conditions where diagnosis time is measured in years - 7.5 years for endometriosis, 13 years for HSD/EDS, etc. Do they propose to deny people painkillers for a decade or so until they get a formal diagnosis of a pain causing condition that then causes a sudden miraculous change in their pain diagnosis from chronic primary pain to chronic secondary pain? They can either treat people as having chronic secondary pain until proved otherwise, or fix the diagnosis delays across the NHS, and I think I know which they'll prefer to address.

[hairyears]

There is, of course, the point we're missing: someone chose this gaslighter - whose views were surely known beforehand - to publish the conclusion they wanted.

You can find GPS who have come to share that view, too, as part of the process of rationalising "Dear God please get this bloody chronic out of my consulting room" and the dismissive attitude to anything they are told by patients who are not articulate white men.

If you're considering reaching-out to doctors, and to their professional bodies, look for people who are prepared to engage with patient advocacy groups, and open-minded attitudes.

You might also find that the most obstinate of gaslighter "no-your-symptoms-are-only-in-your-mind" doctors, and the politically-adroit ones who have risen to prominence in the profession by their skills on the golf course, are still - surprisingly! - very much on your side: they won't be pleased at a quacking trick-cyclist, out of his lane and out of his depth, telling real doctors what they can and can't bloody well prescribe to their own patients.

Those doctors will hear the dog-whistle in "Bringing prescribing practices into line with our major trading partner after Britain's departure from the EU" and you will find that you have unleashed the dogs of war in a 'play the man, not the ball' upon the new policy's author! So: make sure that you get the point across to those traditionalists among doctors, that the author was chosen specifically to get the conclusions *someone* wanted.

Catching up

[jesse_the_k]

....on your posts and

FUCK!

that is alll.