[_cs2017_]

On top of the tragic circumstances outside of anyone's control, it's mind-boggling how much unnecessary pain and suffering was caused by the medical system.

Given that the UK is one of the better countries in medical care quality, why are things still so bad? I understand the disease is rare, but even if it's not diagnosed, surely there's a way to realize that they are just torturing the patient?

Also:

> On average it takes 10 to 14 years for people to be diagnosed

Why so long? The global databases of medical information should contain the relevant symptoms, right?

[epmaybe]

Read the next part of that statement in the article...

On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked

Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential?

Anorexia, certainly Cancer, potentially Diabetes leading to gastroparesis? Unlikely, but let’s keep it on

Ok so you try and treat anorexia, and it didn’t work (except, it did? The article wasn’t clear). Was it terrible that nobody took her at her word and worked this up? Absolutely. What else do you work up? You do a colonoscopy or upper endoscopy, you take samples of your intestine (which looked fine under the microscope most likely), you do some ct scans, and you do a gastric emptying study to make sure food is moving through intestines appropriately.

I don’t really know where I’m going with this, other than to say you’re right that we should be better, and not cause suffering. But hindsight is 20/20

[wolfpack_mick]

It has to do with the way western medicine is organized. It’s optimized for treating diagnosable illnesses, and does that very well.

Complex multisystem diseases like Ehlers-Danlos syndrome express themselves differently in every patient. Different symptoms take you to different specialists, but there’s no one to look at your situation holistically, or who has the time to put it all together. There’s apparently a new approach called ‘Functional Medicine’ which tries to better this issue.

I’m reading Sarah Ramey’s ‘The Ladies Handbook for Her Mysterious Illness’. Part autobiography of her own experiences, part explanation about this whole cloud of mysterious illnesses from ME/CFS to Fibromyalgia to Ehlers-Danlos syndrome. It must sound like a terrible choice for anyone but those affected, but Ramey has great literary qualities and zero tendency to linger in self-pity and the injustice done to the patients. Really worth the read.

[ampdepolymerase]

To be fair, there is an entire branch of (MD equivalent) accredited US medicine called Osteopathic medicine that claims to use a multisystems holistic approach to treat patients.

[lostmsu]

I agree. See also this quote:

> Confining her to a secure unit and forcing her to eat had been pointless.

This is absolutely not true. If they did not do this and the desease or another workaround was not discovered, she would likely have died.

[Buttons840]

There is always the possibility that we just won't know the cause of some medical symptoms no matter how much we test and investigate.

My question is, how often will we "just not know"?

So the doctors do some common tests and still don't know what's going on. From there, what are the odds that further tests will reach a helpful diagnosis, and what are the odds we will just never find anything helpful no matter how much we test and check?

[LorenPechtel]

While it wouldn't have directly lead to a diagnosis listening to her would have helped a lot. Note that they found the solution before they found the diagnosis.

[DanBC]

> Given that the UK is one of the better countries in medical care quality, why are things still so bad?

Some people have spoken about the GP missing EDS, and those are good points. There's a bit of work happening in England to improve rates of diagnosis for those patients.

I want to talk a bit about the MH aspect. There are four separate systems in the UK. Scotland, Northern Ireland, Wales, and England all have separate NHS systems. I'm only going to talk about the English system.

In England commissioning is split across clinical commissioning groups and NHS England. England has been split into geographical regions, and each region has a CCG. That CCG will commission the bulk of healthcare for their local population. This includes most, but not all, mental health care. Some conditions are rare and highly specialist, and so it doesn't make sense for those to be commissioned by CCGs. That commissioning ("specialist commissioning") is done by NHS England. This includes in-patient eating disorder treatment.

Commissioners don't have to buy services from NHS provider organisations. I think the current law even says that commissioners are not allowed to prefer one type of provider over another - they're not allowed to say they'd prefer to give the contract to an NHS provider over a private provider.

A lot of healthcare is paid for by the NHS, but provided by private providers. This is especially true when we look at specialist commissioning for mental health. There are a lot of low secure units, medium secure units, in-patient eating disorder units, etc that are provided by private companies.

The quality of care from these private orgs is often terrible.

The split between CCG commissioning and NHS England specialist commissioning means that it's very difficult to get the local system to understand or care about the poor quality of specialist commissioning.

[LorenPechtel]

The UK system is decent for emergency things and for routine things. As is normal for UHC systems it doesn't do too well with issues that aren't either. They don't bite enough people for the voters to vote the money needed.