NICE are NOT going to publish the new guidelines tomorrow

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Wishful

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Noir said:
I'm sure they save plenty of billions on all the disability claims they now reject because people "aren't ill enough", or haven't tried GET and become ill enough, etc.
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Savings for who? Government funding is taxpayer money. Providing disability support costs one department, medical R&D costs another department, and having people disabled (rather than diagnosed and treated) costs the taxpayers in other ways. So, I'm not really sure what the actual savings or costs to the overall economy (and society) really is. Denying disabilities is not simply an absolute cost saving.
 
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Wishful

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Alberta
wabi-sabi said:
How do you do it in Canada?
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I'm not sure about disability support. Medical treatment is free. I've heard that while our system is expensive, it's less expensive to the overall economy than the US system. I think this is one of those complex issues where you need to do your own research into services and costs and come to your own conclusion.

I'm certainly glad that I'm in Canada. Not that the medical system actually helped me, but at least all the attempts at getting help didn't cost me much. I've probably spent less than $1000 on my ME, mostly for gas and some prescriptions (free prescriptions is still being debated).
 
nerd

nerd

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863
Wishful said:
Savings for who? Government funding is taxpayer money. Providing disability support costs one department, medical R&D costs another department, and having people disabled (rather than diagnosed and treated) costs the taxpayers in other ways. So, I'm not really sure what the actual savings or costs to the overall economy (and society) really is. Denying disabilities is not simply an absolute cost saving.
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No need to tell them the other side of the coin. I mean, theoretically, the other side should be granted regardless.
 
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hapl808

Senior Member
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2,347
nerd said:
Why so much?
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I'm only familiar with the US legal system, but sadly that sounds like a vanishingly small amount of money for a lawsuit against a government agency here. Maybe barristers are different in the UK, but it would likely require a pro bono crusade here to get any movement. And there's no guarantee that the outcome would be positive. (Whenever someone says a legal outcome is guaranteed, they likely have had little personal experience in legal actions.)
 
Rufous McKinney

Rufous McKinney

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13,495
Wishful said:
I've probably spent less than $1000 on my ME, mostly for gas and some prescriptions (free prescriptions is still being debated).
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I ended up with a job that came with the "good medical insurance". you discover your handing over 1/4 of your Gross Domestic Product. Staggering sums of money every month, and we don't go to doctors. Fix yourself, is the medicine I always was using.

So then I was receiving very poor HMO care. Extremely poor. But my husband's appendix ruptures and they save his life.

Every test is screwed up. Every referral is denied. The time and money wasted. Awful doctors. 5 minute appointments, 5 months waits.

And then Insurer # 1 just drops the policy. They get to keep EVERY dollar they collected of that money you were forced to give them. They own a giant bldg, and I"m on to some other insurer. Can I have back ALL THAT OTHER money?

So then you learn your insurance is covering the costs for the uninsured.

Why work?

I took an uninsured teenager, with a broken hand, to a US ER . After five hours, he was never treated. I never saw ANYONE leave the waiting room. To be treated. He was the only VISIBLE Injury. ANd they dont treat you.

He got his broken hand set about a week later. This is the great Medicine in the US your hearing all about.
 
Marylib

Marylib

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andyguitar said:
It's a process called Judicial Review. But I'm not going to say much about it here as you never know who is looking at this website ;)
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True - we don't know. Thanks @andyguitar When it comes to getting lawyers, that's a huge expense. There are those who saved their GET prescription but proving it is an entirely different matter when the other parties can just say 'oh how awful such anxiety and stress...'
 
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livinglighter

Senior Member
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379
I feel as though a peaceful demonstration outside NICE HQ is in order. According to their automated telephone line all the staff are working remotely from home, but I think some patient-led media spotlight/office talks may spur them into some form of action. To delay the guidelines again is crazy. Our actual voices need to be physically heard!

I can’t think of another way that would cause the same amount of pressure/attention that the Royal Colleges have.
 
BrightCandle

BrightCandle

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1,218
I wrote to my MP anyway with a link to the NICE publication and why its important that he intervene for my and others behalf. I honestly don't expect much, he is a good guy and he took part in the last ME debate in the house so he knows a bit about this but being an opposition MP means he can't do much than pass it onto the health secretary.
 
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Bronc

Messages
163
livinglighter said:
I feel as though a peaceful demonstration outside NICE HQ is in order. According to their automated telephone line all the staff are working remotely from home, but I think some patient-led media spotlight/office talks may spur them into some form of action. To delay the guidelines again is crazy. Our actual voices need to be physically heard!

I can’t think of another way that would cause the same amount of pressure/attention that the Royal Colleges have.
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That is a great suggestion. I would be all up for that. How about 2 protests one at the head office in London and one at the Manchester office to save us northerners a long journey?
Here is the NICE number if anyone feels like having a friendly chat with them to register your complaint: (0)300 323 0140
 
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livinglighter

Senior Member
Messages
379
Just not too long ago, I spoke to staff at Action for ME to ask if there is anything we patients can do that could be of significance.

The feedback was;
  • Some patients are approaching their MP’s.
  • Some are contacting journalists.
According to Action for ME they have received a high volume of requests from journalists wanting to speak to patients about their experiences. At the moment they have more journalist interest then people/cases they can refer to.

They said on their website there is ‘share your experience’ section where they would like more people to tell their stories, in the hope they can be used as media case studies for interested journalists to contact.

https://www.actionforme.org.uk/research-and-campaigns/share-your-story/

I was also told at the moment that Charity is hoping the pause is because NICE is trying to get those opposed to the new guidelines to come round to it. But they will consider the next course of action if it's not the case.

The current approach is calm as they are conscious of how ME patients have been painted out to be angry activists in the past.

I’ll join some UK Facebook groups to see what others think about peaceful demonstrations taking place where we also highlight we aren't an angry mob, but informed patients wanting access to better healthcare.
 
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hapl808

Senior Member
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2,347
Angry mobs tend to get more attention and results than polite, informed patients. Unfortunately many of us don't have the strength to stand up, let alone assemble an angry mob.

Signed, an American who would still be speaking with a British accent if it weren't for a series of angry mobs.
 
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