Why is the UK so barbaric when treating ME

[unicorn7]

I've been reading a few posts here and and also in the in memory of forum. I don't get it, I don't understand how these people are treated so cruelly. Here in the US, I don't hear about that as much if at all, including Canada.

Is it because of their socialized medicine? Not to mention coming to your house and institutionalize someone? I cant wrap my head around it

I think the institutionalizing happens everywhere. Just the other day I read a similar story about the US. I think it really depends which doctor you happen to run into and if they can make a really "solid" psychiatric case out of you.

I think the UK is bad, because the leading BPS-people are there. The same as the Netherlands.

We have a different system in the Netherlands than in the UK, it's sort of semi-socialized medicine. The funny thing is that before this happened to me, I thought we had a pretty good system. Pre-ME I have had solid and quick help (surgeries etc.) for everything I ever had, with hardly any costs.

I think in the Netherlands it's actually the downside of having a good system. The care is good, but efficient. The doctors follow protocol, the healthcare costs stay low for everyone. Going outside of protocol is hard, especially if you ask a lot of money for it. You are quickly seen as a money-hungry quack here.

So, if the protocol is CBT/GET, there is not a lot of people questioning that or trying anything outside of that protocol. I think there is not a lot of incentive in the Netherland (as a doctor) to have a private practice and treat people without insurance covering it. Because usually (outside the ME/CVS world) there is not that much need for it.

 

[bearVSshark]

As much as I am a fan and supporter of the NHS generally, my treatment and support with regards to my ME has been ignorant at best and lazy at worst. I recently tried a new doctor who was supposed to be the ME/CFS specialist at the practise which immediately filled me with hope.

Unfortunately the reality was that she told me that there was no concrete evidence that ME wasn't psychological (!) and that the only treatment was talking therapy. Luckily for me at least she felt I was too moderate to be given GET. So, silver linings!

I've heard some good things about various private practises in the U.K., at least being able to offer something else outside of the standard NHS GET/CBT model.

Does anyone have any recommendations or experience with private U.K. ME clinics (London ideally)? Or even a London based NHS practise that can do a bit more?

 

[maybe some day]

Unless you have very good insurance or can afford to see a specialist on your own, you may not be any better off in the US.

This is very true. In fact Ive known some folks who spent many thousands, only to be worse, same, or barely any better than when they first started treatment. All the drs- at leasts the ones I know of, wanted payment at end of visit. You had to submit the insurance and "see" what was covered. Since its all experimental at this point, it is a roll of the dice to see if anything would get reimbursed.

This is SF bay area, and everything is cutting edge. But unless you have a wad of money to try different treatments, I dont think Im any better off being here vs another state.

This was a good topic, thanks for everyones input and opinions. Made things more clear for me

 

[Dolphin]

In places where there is socialised healthcare, there seems to be an increased reporting. These tend to be people who experience malpractice as a result of being forced through one system. It appears to be greater in the UK over Canada due to what system is in place (eg. due to both political and economic influences... Brexit govt, anyone?). My aunt is severely disabled (not with ME/CFS), in care/a home in the UK, and I've been watching the political goings-on over the years. It's very disheartening.

CBT/Graded exercise therapy were just as dominant during the 2000s (i.e. pre-2010) when Labour were in power in the UK.

Sure. And you'll note that UK's govt(s) have grown increasingly conservative, including fiscally. That's what I mean.

It is not clear to me what you have shown. The Conservatives, the Liberal Democrats and Labour have all been in government in the UK over the last couple of decades, including Labour for 13 years continuously. CBT/GET clinics were prominent during all these periods. Those 3 parties hold all but a handful of the seats in parliament in England.

I do agree with you that been forced through one system could be a major source of the problem.

 

[lafarfelue]

@Dolphin I'm unsure what point you are trying to make or why you keep coming back to this. @Skycloud 's post explain a lot of things very clearly that I don't have the cognitive energy to at the moment.

 

[Dolphin]

Instead of replying to someone individually, I will just make this general point: even if the NHS had more money, the current model does not involve much patient preference.

If people have to pay something, treatments that are not popular such as CBT and GET won't be as prominent. The no/little-patient-preference model of the NHS has allowed CBT and GET to flourish.

It has frustrated me for a while that some people seem to deny this issue and claim any problems with the NHS are simply down to a funding problem. More money for the NHS could simply mean or have meant more and more money for CBT and GET services e.g. more appointments, more rehab in people's homes, etc. (although potentially this is less of a risk than in the past).

Perhaps the NHS is the best model of healthcare overall, but to have a proper discussion, potential problems with the system should be recognised. It should also be recognised that the systems in the US and UK are not the only models of healthcare.

 

[Hip]

A lot of the shortcomings of the NHS might be addressed simply by increasing the clinical freedom of private non-NHS doctors in the UK, so that at least some UK doctors can offer treatments that are used in the US.

It is the GMC (General Medical Council) in the UK which I believe sets the rules for all UK doctors, NHS or private doctors, and the GMC seems to place limits on the clinical freedom for all UK doctors, compared to doctors in the US.

This means UK doctors are not allowed to explore the sort of antiviral and immunomodulatory treatments that have been pioneered in the US. And UK doctors are generally discouraged or not allowed to pioneer their own treatments, else they may raise the wrath of the GMC.

 

[SilverbladeTE]

Hip,
as I've pointed out on other such threads, the problem really isn't the NHS, or even the BMA (a bunch I loathe)
but the fact those institutions have problems, especially the BMA, is because of...the Human Factor :/

people in groups *SUCK*, eventually they become extremely corrupt and often down right evil, over time especially when power and money are involved.
It's a universal problem.
Takes a lot of effort and remarkable people to prevent or prevail against that....eventually though....you often need an overthrow of the excessively corrupt regime, be it a government, management system, religion, housing association or whatever ends up running amok.

Scumbags get into positions of power, and manipulate to push out decent folk, the evil cuckoo in the nest.
And decent folk get weary of banging their head against the rock of stupidity and corruption and leave, and so, systems go to hell.

Also, as an adjunct to that, "the road to Hell is paved with good intentions"....
Those with power start thinking of "the Big Picture"...and forget that big picture is made of lots of little tiny dots who are REAL PEOPLE.
They end up "not being able to see the trees for the forest", to paraphrase a saying
good example of this is the UK politician Gordon Brown (ex-Chancellor and PM, unwise I believe him to stick with the arrogant monstrosity labour became, but I do not think him a bad man at all, just caught in a trap of his own making)
and Tony Blair even more so (NOT a person I like, respect his diplomatic abilities, but not much else, he has a hell of a lto of responsibility for the shambles the UK is in now),
Blair thinks getting rid of Saddam Hussein was worth the ghastly carnage and mess Iraq is in now, well it's like if you have an infected toe and cut the whole damn leg off to treat it!

And private medical systems are often involved in evils, too, see Dr John Bodkin Adams, as a "hack for hire" he could tend to the "privileged", and blackmail them by knowing who had abortions, STDs, etc, and thus got protected from being exposed as a mass murderer.
"Health for profit" is NEVER a good idea (the reasons should be obvious)...but neither is a monolithic bureaucracy that cannot be held to account or responsibility.

we need to move onto better systems of order, group behaviour and responsibility etc.
Fat chance, but as the current complete screw up of the world shows...we have to take such steps, before our species goes extinct. We are just the fore runners on the "dodo trail"

 

[Skycloud]

It's difficult having these conversations because the issues are many and complex. I appreciate hearing different perspectives