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

[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.