Why are places allowed to not follow the NICE guidelines?

I just don't understand. After recently reading a thread where a member talked about how the local clinic was not following the NICE guidelines. And also read an older piece about how, in the case of a severely ill hospitalised patient, the Royal Lancaster Infirmary said they were following BACME guidelines instead of NICE ones.

I haven't been able to keep up with all the news. Can someone please explain to me how come clinics and hospitals can just ignore the NICE guidelines?

 

The NICE Guidelines are recommendations for best practice within the NHS. Health professionals retain the freedom to deviate from the guidelines it they consider it. in the patient's best interest.

That really means two things.
1. The NHS is not obliged to fund the cost of anything outside the Guideline.
2. If something goes wrong and there is a legal challenge then if the Guidelines are not followed that raises the possibility that management was not appropriate. But it does not prove it.

The NICE Guideline to some extent entails its own failure because it effectively says that there are no known treatments but that there should be teams of people treating people as best they can. The current situation was bound to arise. There is more work to do, but that was always going to be the case.

 

That's an interesting thing I didn't know.

 

also means no expensive extensive testing such as MRIs etc.

 

I think the NHS as a whole needs to properly answer this question, transparently, in it's reply to the Regulation 28 Prevention of Future Deaths report, as it encompasses treatment under both the 2007 and 2021 Guideline.

 

I guess that's fair enough as they're not indicated in ME/CFS, and if there's a suspicion of an alternative diagnosis they should screen people anyway. (In my case at least, they did.)

But it's a potential opportunity to raise awkward questions locally—for instance, if a trust or ICB is funding forms of rehab that have no evidence base and aren't recommended by NICE, why have they made that choice when they claim to be strapped for cash?

 

Why is it that we sometimes see the opposite claim? That guidelines either forbid something or don't allow for something and that's the only reason they don't do it and that's final because it's written in stone and blood in the guidelines?

Is there a second set of super duper secret behind-the-scenes guidelines we don't know about? Or is this all mostly arbitrary? Or...?

 

Obviously, a lot will depend on the speed of the Atlantic meridional overturning circulation.

And which argument's most convenient.

 

That is just a reflection of the NHS not being obliged to fund. When I started treating people with RA and lupus with rituximab the NICE guidelines did not approve it. So lots of people I could have treated didn't get treated. But when I managed to find some money somewhere I could treat some moe people. For lupus patients in hospital costing £500 a day just to lie in a bed the administrators tended to see the argument for spending money on some extra drugs. Less so for RA.

 

That's probably why so much was made of keeping CBT on the guideline, even if framed as only for support.

But it's still described as a treatment in some clinics, and so is GET despite being explicitly forbidden. So I'm sure there's a lot of "the rules are the rules", it's obvious that they're not equally enforced. In some cases, they are explicitly defied with zero consequences. Even with systems of written rules, in the end might is right is the only real way things happen.

 

That's part of the problem of not having a qualified doctor leading clinics. If the treatments are delivered by various types of therapist, presumably those people have had specific training on them—they're not just drawing on their on their original clinical discipline.

But if no one devises a NICE-compliant training package for them, they'll have to keep doing the same thing. They've got nothing else.

 

I don't know how to put this well but we have an issue where maybe we are missing a term like 'everyday disabiltiy bigotry' that is specific to us and any other ill people who aren't well-served by all the behavioural stuff that is now being stoked further by the pyjama paralysis pushed (based on the idea that old people who got stuck in hospital for too long ended up coming out able to do less because they'd been left to waste) and the lack of realising that rolling out stuff that looks great on the surface to them as 'stuff they'd use for their kid not sleeping right' that came out of Crawley, Chalder and so on's factory of worksheets and the like isn't proven for all illnesses, particularly those that haven't 'been fixed'.

The result of them doing this is of course that they are treating 'anyone/thing but' whilst not realising, because to them they didn't do it because their thoughts were that CFS is psychosomatic as a starting bigotry, that as long as they keep their clinics focusing only on the 'fatigued' as per the old definition they feel comfortable with and thereby old cohort (if they really do filter out those with PEM depsite their claims of 'it's OK its dangerous because we only treat CFS/ME') they are allowing themselves to be part of a machine that is indeed basically taking the money for ME/CFS people and refusing to acknowledge it as a medical condition. "try these things that work for normal people"

I went through hell because of all the people who happily rolled out all these old granny ideas of sleep hygiene and personality slights as if we 'boomed and busted' so that I got misogynised left, right and centre by people throwing work at me being incited to suggest 'it's how I handle it'. Not that it is the cumulative amount - which is why I'm also cynical about the focus still on that term 'pacing' even though we know the laypersons interpretation of it means very, very much not what we mean.

 

More like their professional ethics codes say that in writing somewhere, but they are just that: words somewhere. Enforcement is the only thing that matters, and those duties and obligations are not actually enforced as they are written. Just a slogan, basically.

It looks nice, like Google's "Do no evil" but at least they had the honesty to just stop pretending and dropped it because it doesn't matter. That slogan had exactly as much weight in real life as the "right" to health care and other things that are just some shared fiction people pretend is legitimate, rather than the simple fact that only power matters in the end.

 

They should be doing MRIs for people because ME symptoms overlap with many cancers and other conditions so an ME patient can’t be sure that their symptom are ‘just’ ME.

In practice with an ME/CFS label or fibromyalgia it’s practically impossible to get referrals or screening for other issues. Unfortunately your good example isn’t typical.

I became severely ill at a young age had a few blood tests and no specialist and no screening before being slapped with a ME diagnosis and becoming bedridden for years. Still no scans.

Until I fought and fought for repeat blood tests and got found to have a different issue and have had a few scans since then. But not for all areas that I need. Also had I been more severely afflicted than I already was, I couldn’t have fought against the carelessness and disbelief to get the blood tests and the referral that lead to the scans.

Now despite a physical abnormality of at least one of my muscles that is actually visible, I have waited years for a scan that has now been cancelled three times because I don’t meet the critical for it. The reason that I don’t meet the criteria is that the hospital/s I’ve been referred to expect pwME to have messed up muscles.


MRIs are definitely are indicated for people with ME, or any other disabling condition of unknown origin. Because it’s not okay to disabled people out of the workforce, and their whole lives, without at least having a little look to see if you might be able to find something to treat.

It’s certainly not fair or enough, to decline.

 

Just to be clear, I wasn't referred for ME/CFS. It was because my gait changed in an oddly distinctive way in middle age. Two different GPs thought it might be a sign of a neurological issue, and each referred me for a scan.

Long story short, I was just compensating for a weakness in one muscle group, which could be a hereditary thing. The scans were to rule out clinical suspicions of MS and/or conditions that cause parkinsonism, they'd nothing to do with ME/CFS.

 

You were clear, I understood.

I think what is unusual is that despite your having an ME diagnosis on file you were granted investigation for your signs and symptoms.

I don’t think it’s possible to do a scan for ME because as far as we know it doesn’t show up on scans, or the ones that we have available anyway.

So when guidance says scans, MRI not indicated for ME or whatever they’re calling it, CFS I guess, that sounds reasonable in theory, and at first glance there being no scannable aspect of ME.

But thinking about it a bit more and observing the practical implementation of this policy, since you can’t scan ME, they don’t actually need to say this, it’s self evident.

So it becomes clear that the guidance is actually not there to stop the other worldly ethereal thing that is ME from being scanned, but the real people with bodies and symptoms that, can and I would argue should be scanned in order to save lives and to treat treatable conditions.

 

Speaking personally—and I only know two other people with ME/CFS, but it's been a lot of decades and we've covered numerous British cities and regions between us—the ME/CFS diagnosis has never been an issue when we had symptoms of things that weren't ME/CFS.

I've acquired four other diagnoses as I've aged, my friend has been treated for two different cancers, and the other friend has a headache disorder plus a reproductive one. We all got investigations and treatment.

Some people report terrible problems with things written in their notes that affect every aspect of their care, seemingly for life, but it's hard to assess how common it is for people to be refused investigations for non-ME signs and symptoms. Maybe it's something that ought to be researched further?

Obviously, doctors dismissing ME/CFS symptoms seems to be almost universal, and I'd expect little else.

 

I and the few other people that l’ve known offline have found it extraordinarily difficult to get referrals to assess for other conditions and scans. I’ve had no problem getting most of the routine blood tests I need but any others, well that’s at the GPs whim and not related to the nature of my symptoms except broadly. But I know people who have had more difficulty getting routine tests updated.

But when I have managed to get referrals which usually I can’t because I am met with that will be your CFS (not my diagnosis) or then see a specialist for other reasons they have sometimes helped out by getting me scans but I have been shown guidance not to refer or investigate CFS and I have looked them up myself when some of my referrals have been bounced. It’s written down so it’s not just individual prejudice.

But I am severely affected and have been severe moderate all my illness I cannot work and I think that’s the difference sometimes if they don’t have to get you back to work and you’re ill young enough you just get written off. That will be interpersonal prejudice to an extent.

I have had loads of help from a really great specialist recently. But it was an urgent referral so maybe that makes the difference. A slow burn problem isn’t considered a problem at all.