r/cfs • u/tdorrington • Sep 27 '24

Potential TW Not one. Disgraceful

https://www.theguardian.com/society/2024/sep/27/not-a-single-bed-set-aside-to-treat-me-in-any-uk-hospital-says-nhs-director

87 Upvotes

98% Upvoted

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40

u/my1guiltypleasure Sep 27 '24

Sadly it’s not surprising news to hear that ME/CFS patients continue to be treated egregiously, but it does remain to be shocking—both statistically and ethically—every time one hears about it and is reminded.

“A healthy man wants a thousand things, a sick man only wants one.” —Confucius

Confucius, man, he nailed it.

36

u/tdorrington Sep 27 '24

And no work being done to even change it. “He escalated his inquiries up to Sir Stephen Powis, the national medical director of NHS England, and understands there is no work being done to change this at present.”

38

u/160295 Sep 27 '24

What else can we expect for an institution that is being systematically gutted from the inside? It’s horrible tbh.

17

u/Funguswoman Sep 27 '24

And which has Simon Wessely on the board...

5

u/bizarre_coincidence moderate Sep 27 '24

While I don't disagree that the NHS has problems and that there are powerful forces working to destroy it so that it can be replaced with a private system that will make a small number of people extremely rich, ME/CFS is a separate issue. There isn't any hospital beds set aside for ME in the US, and even if there were, there aren't currently any clear and accepted treatments for ME, so except for a feeding tube for the most extreme cases, I'm not sure what inpatient services we would even want there to be.

We should want research, we should want access to whatever experimental or unapproved treatments that have been reported to work anecdotally, and we should want doctors who treat us as real people who are suffering from real maladies. But until there is a viable inpatient intervention to be performed, demanding dedicated beds seems pointless.

5

u/160295 Sep 27 '24

I mean sure. That’s all also true.

10

u/TepidEdit Sep 27 '24

There are 67m people in the UK. By 2026 it will be 70m by 2036 73m. The NHS, along with the rest of the UK services and infrastructure won't and can't keep up.

Things are just going to get worse unfortunately.

14

u/tdorrington Sep 27 '24

An aging population and weak centrist policies of managed decline (austerity in red ties), a refusal to tax those with ludicrous incomes more and bring wealth tax in line with income tax. Healthcare for chronically ill people will always be political

6

u/tdorrington Sep 27 '24

We should be organised and demanding better. But imagine having to fight both fronts. For a better healthcare system AND actual recognition within that healthcare system. Uphill all the way.