"The Orphan Patients", 2019, A. Voth (website of College of Physicians & Surgeons of Alberta)

A. Voth, MD, LMCC, FRCP, (Can) Fellow ACP

http://www.cpsa.ca/guest-column-the-orphan-patients/

ME/CFS is mentioned specifically

I learned about this in the newsletter of the National ME/FM Action Network

https://twitter.com/user/status/1239653542501154820

https://twitter.com/user/status/1239655890854252547

 

That was excellent. Really highlights that reality is not of stigma, but of blatant discrimination, as a matter of conscious, deliberate choice. Stigma is one thing and bad enough, that's not what's happening here, physicians are openly choosing to discriminate against an entire group of diseases in a way that would result in serious disciplinary measures if it were on most other grounds.

Which is frankly absurd, that many types of discrimination are actively punished, yet the most important one to the profession itself, of the actual disease itself, is not only accepted but actually encouraged.

I technically have a GP but I expect nothing of her. She has stated preferring to drop me and so my status is basically of not having any medical care, the only thing that actually helped was signing the disability papers. On everything else I effectively do not have any medical support. And that's the best I can hope for. She was an emergency doc for most of her career and I kind of expect her to be pulled back on rotation and mostly leave her GP practice so I have no idea what kind of future medical support I can rely on.

Then again, this is what is advised, so it's not a secret or shocking. All relevant medical authorities basically prescribe this discrimination, not quite saying it plainly but for all practical matters, they may as well just say it bluntly, it would barely make a difference.

 

Thank you for sharing @Tom Kindlon and yes @rvallee it is also my experience, my GP is doing the bare minimum, and it would be very difficult to find a doctor willing to accept a patient with a chronic disease, let alone a patient with ME.

The biggest problem i have with GP’s managing ME patients is that they are very unlikely to be curious, they very seldom have recognized more than a few patients in their practice, not enough to study, read the science, and establish cohorts, do research, test hypothesis, or do clinical trials. All of this is done at the specialty level.

We have been failed and abandoned for a long time.

 

Interesting read. The same thing is also happening in research, with ME/CFS deliberately being neglected or even ignored completely (varying by country).

 

In the UK, GP surgeries have "lists" of their patients. A new patient wishing to join a practices list must live within a clearly defined area, although some practices may allow a little leeway.

Some patients might find their home address is covered by multiple GP surgeries and so there is some choice. In some locations you might only be eligible to apply to join one surgery. If you're struck off their list you then have no GP at all.

I have heard of patients being struck off for making quite normal & reasonable requests, or making a reasonable complaint.

I have also heard people being refused when applying to surgeries on the grounds they don't take ME patients.

I have also heard someone who tried to make a complaint told the practice didn't take complaints from ME patients.

In my life I faced discrimination for my religion (one boyfriend's mother), for being a girl studying a guy's subject, when I moved country because of my nationality and then because I was a female doing a guy's job. Frankly, all water off a duck's back - I was good at my job and had no problems proving it.

I had never before experienced nor anticipated the discrimination I have faced since being diagnosed with ME. Discrimination from the ignorant who know no better is one thing because they can learn. Discrimination from the so-called educated is another and they won't learn because of an unshakeable belief they know better.

 

I think the thing to do if you experience discrimination from a GP practice in England is to complain to your CCG and not the practice itself. CCGs have to publish all their responses to formal complaints, so discrimination would be immediately highlighted.

 

It's not happened to me person, but as far as I know if a practice removes you from their list, there's not a lot you can do. Other practices are not obliged to take you on and if you have a reputation as a troublemaker then they may be less likely too.

Even if your practice doesn't strike you off, you're going to feel quite vulnerable if you've complained and it goes badly.

I can see why many people with ME are reluctant to stick their heads above the parapet. It's a very unequal relationship.

 

Yes, it probably depends on how well you can write and frame things. I am pretty good at reading and writing 'legalise' and thinking strategically, so have been successful when I've made NHS complaints (such as when I was having a very poor experience with my autism diagnosis assessments).

If any one on the forum in England ever wants some help drafting formal NHS or DWP complaint letters they can private message me (but will need to work patiently with me because of my own health and cognitive limitations).

I would probably put a copy into my MP too, if complaining.

 

Yes, there's that too. A lot of patients are simply too scared to end up making the relationship even worse or being left in limbo without a GP.

It not just about capacity. It's also about fear.

For so many their diagnosis came with the unwelcome realization that they are now less than second class citizens. Fairness is a luxury afforded to other people.

Compared to many, I have been extremely fortunate and that's something that's easy to take for granted until you meet someone who has been treated very badly, even told that their complaints won't be heard because they have ME. It suddenly dawns that your good fortune isn't entirely down to your ability to communicate and write letters, but to the willingness of others to give you a fair hearing.