Sussex-Wide CFS/ME Service: Out of 973 patients referred, only 105 saw the doctor

In my country, there seems to be a lot less people employed offering CBT or graded exercise therapy or similar for ME/CFS. And those that do don't generally have the status within medicine as an official NHS-type clinic.

Also, just because people with ME/CFS pay for lightning process doesn't mean they'll pay for CBT or GET.

 

Yes, but how can it be allowed that this is "prescribed" without having seen a doctor?

Edit: Not that it would change something I think.

 

It sounds like if NHS was better funded, one might have a choice of regular, super, and ultra versions of CBT and GET.
Our system is getting worse for ME/CFS patience, it’s still 1000% better than NHS.

The worsening here seems to have come about due to the very smart people instituting a series of fixes a few years back, fixes moving us in the direction of nationalized healthcare. The Smartest People know so much better than hommes ordinaires such as actual doctors that they’ve made it impossible for new people to replace the handful of those who practice in our little corner as they retire.**

The one person in New York City who was any good, Derek Enlander, has retired, and he was unable to recruit anyone to take over the practice.

Reason? With the additional regulations, you can’t bill for it. With electronic records, you have to follow the rules Laid down by bureaucrats who prescribed this treatment for that condition. Well, the book says to give us amphetamines, that’s not quite the right thing. Anything that actually helps us is not covered. Apparently, before electronic records etc, the handful of people who try to look out for us found ways around that, even though we officially didn’t exist. Can’t do that now.

So we have a little bit of NHS here now, and that’s what he does.

**D.E does work with new MDs to get them interested in the field, and to incorporate knowledge of us into their practice. But they can’t set up an mecfs specialty practice.

 

ME aside, no one has to die because they can't afford treatment, and no one loses their house because they have to fork out for an unexpected hospital visit. You do have rights under the NHS and you do have choices.

Private healthcare is more costly in America than it is in the UK in general, too. A two-day CPET here costs £100-200, compared to $2000 in America. A private MRI is only about £250 here. If anything, private healthcare here probably has to be more competitive because most services can be had on the NHS for free.

People like Sharpe and even Sir Simon aren't rich here, but they could be in a private healthcare system.

The NHS does also provide some flexibility. You're allowed to request treatment out of area, and this will be decided on a case-by-case basis, with an appeals process. In rare circumstances, you can apply to get own healthcare budget to manage and spend yourself.

What's more, privatised healthcare systems are at the whims of insurance companies. As are disability benefits. You're trading in one set of problems for another.

 

The solution is not creating a fee for service, especially in a socialized health care system setting. Patients deserve access to competent health care regardless of their disease and regardless of their ability to pay.

Doctors who actually charge patients can be prone to sell snake oil and feel less restricted than in public practice.

 

This reminds me that a lot of the problems in the UK could have been avoided if there were no NICE guidelines for ME/CFS.
The thing is that at least one Welsh group and I believe some others specifically called for NICE guidelines (I think in Wales there was some sort of call asking people what they want NICE guidelines done on).

Calling for NICE guidelines for ME/CFS at that time I don't think was a good idea. It was very likely that CBT and GET would be recommended. At the same time, it was likely that other treatments would be recommended against as there were not two positive RCTs to support them. One of the main purposes of NICE is as a rationing body: it was always likely than having NICE guidelines would mean that some treatments and tests would be recommended against.

I think it's a good example that one should be careful what one wishes for. Lobbying for specific things isn't always the best approach, one needs to weigh up the positives and negatives/probability things will improve or disapprove.

 

Bankruptcies for medical expenses seem to be a particular feature of the US system. I'm pretty sure I read somewhere that they are not big part of most medical systems in the developed world where there are lots of different systems apart from the NHS system.

 

One can believe that the NHS system can cause problems and still believe it is the best system.

An analogy I would make is drug side effects. One can accept a drug can cause side effects and still believe it is the best option. It would be disappointing if doctors denied a drug could cause side effects just because they thought it was the best option. I have similar feelings when I see people deny the NHS system could have led to CBT and GET (and people like Peter White, Trudie Chalder, etc) getting so dominant within the NHS

 

We do have an overpriced, overly complicated, financially burdensome system, and you can be in a world of hurt due to medical costs. I am also confident that the people here who believe they can fix and remake it are fully capable of making it worse.

 

Bankruptcies due to medical expenses are real but not common. There was a fake study promoted by a politician who had a particular agenda which trumpet that conclusion, however if you look at it a bit more closely it falls apart. People do become bankrupt after losing their job due to inability to work, and then having medical expenses which they cannot pay, because they could not pay to continue their insurance after losing their job. Susie’s bankruptcies are more due to the loss of health, then the loss of the ability to produce an income.

There was a publicized study promoted by a politician (May have been Liz Warren)who had a particular agenda which trumpet that conclusion, however if you look at it a bit more closely it falls apart.

People do become bankrupt after losing their job due to inability to work. If they also medical expenses which they cannot pay, because they could not pay to continue their insurance after losing their job, they are in a bad condition.

There is an 18 months period after losing your job during which you can continue your insurance coverage on your company plan, at the company group rate, using a regulation called cobra. But, after you lose your job your income is going to drop dramatically while your expenses don’t. So people without a substantial savings plan may not be able to afford that continuation.

People vote for politicians here and probably most places based on what they look like, sound like, their perceived tribal identity, the promise of handouts, and reflections of virtue signaling. The more a politician promises handouts, the worse their country’s economy will be, and the more they signal virtue, the more corrupt they are. Both methods win them votes.
So, we get about the government we deserve.

 

So vote for the politician who seems the least virtuous? But then you'd end up with... !

 

Douglas Adams put it best:

'it is a well-known fact that those people who most want to rule people are, ipso facto, those least suited to do it.

'...anyone who is capable of getting themselves made President should on no account be allowed to do the job.'

 

or....to paraphrase, a lot, "if you don't vote for a lizard then the wrong lizard might get in"

https://www.goodreads.com/quotes/162557-it-comes-from-a-very-ancient-democracy-you-see-you

 

'To summarise the summary of the summary: people are a problem.'

 

I've heard about people getting their own healthcare budget from the NHS. I've never found out what happens if you run out of money.

 

Then I think you're screwed. Though, technically, you can get emergency care at any point.