Discussion in 'General disability topics and advocacy' started by Andy, Dec 2, 2019.
From the cited Kelly Young commentary that discussed how the experience of many patients of RA differed substantially from the understanding of most doctors.
That sounds familiar!
"...the lack of remuneration “reinforces the view that their work is not as important as that undertaken by health professionals.” "
I recently declined two patient rep opportunities for exactly this reason - and told them that if they were serious about patient partnering and not tokenizing us, they'd need to pay for our wisdom / lived experience / time / energy as sick and disabled people are the last ones who should be working for free.
Well we all know the answer to that. Merely pointing out disaster leads to angry attacks about "borderline terrorists" and "ungrateful bastards".
Though this is the nature of asymmetric disputes, working through institutions controlled entirely by one side is unproductive when that side has no intention of engaging on any point and the only way to adapt to it is indeed guerilla tactics. Except the institutions then use that to make the point that they were right to reject all engagement so this isn't a workable solution.
The problem is the asymmetry of power. Fix that and the problem disappears entirely. Patients need rights and agency, due process and informed consent. We have none of those. Even the basic facts of our disease are distorted, we apparently don't even have the right to basic acknowledgement of reality. Those are easy problems to fix and they make every other tactic obsolete. The only obstacle to fixing those is yet again the power asymmetry.
Right now the feelings of a few are held above the right to live and quality of life of millions. That ain't right in any context, in medicine it is immoral and broken. Guerilla tactics generally only lead to stalemates anyway, we're already there.
I did not understand what is meant with guerilla tactics. I have yet to see patients moving in small groups to deliver hit and run attacks against a stronger enemy.
Maybe the idea is that patients should perform the valuable role of being outsiders that are capable of seeing and acknowledging certain problems much better than insiders.
If it means turning up at a vet's in a gorilla suit I think it might be worth a shot, I'd probably get taken more seriously.
Is this another way of saying patients should be activists. But obviously they can’t say activists because that has already been used for bad patients with opinions. Ironic if they’re using guerilla for good patients with opinions as normally the establishment isn’t too keen on guerillas either. And indeed guerrilla is a rather stronger term implying direct action both non violent but also violent whereas an activist is someone who is more at the petitions and ballot box end of the spectrum.
Only good patients, though. And relatively healthy ones, all things considered.
Which is what AIDS activists did and they were demonized as terrorists because they weren't good patients yet. It basically took threatening the blood supply to get people to act.
I think it's just a way to get patients to do the work institutions don't care to do, for free. Engagement means do the work we don't want to do. That's literally the message Francis Collins gave us at the "accelerating research" conference where nothing was accelerated. He said do the work because we won't, knowing we are in this situation precisely because unlike AIDS activists we can't do that. Wasn't exactly subtle.
I can well believe this is the experience in the US. My only contact with a service rheumatology clinic in the US gave me the impression that I was in a money/patient sausage machine (money coming before patient). I was asked which 'imab' I recommended. Which is a bit like going into Tesco and asking the shelf packer which carbohydrate they recommended. At the advisory board in the US where the data were revealed on the effectiveness of rituximab the most eminent US rheumatologist present said it would not sell because physicians would not want a treatment that only required an infusion once a year - no money in it.
The writer is right about lots of observations but they were standard teaching where I trained. Yes, the neck is involved and most of us have seen Eric Bywaters' pathology slides to prove it - and so on. The medical view she criticises is to me a straw man in a sense but I suspect in the US far from it. It has a lot to do with generalist physicians wanting to hold on to problems that require specialist care. When useful management became available in the mid 1990s RA patients in the UK all got referred to specialists. The Americans hung on to theirs and continued using prednisone and aspirin (and later maybe an imab to get the payments in).
Sadly what has made the pendulum swing the other way now is that NHS funding is so dire waiting lists have gone back to 6 months and GPs are being enticed to manage everything again.
What I am not sure about is how much 'guerilla tactics' from patients will help. The population needs to pay enough into a single payer national insurance scheme to get themselves a half-decent service with trained specialists. Expecting primary care physicians to know what to do is crazy.
Or vice versa (insiders in terms of knowing their needs/the terrain of their symptoms more intimately than doctors, vs outsiders , or versus slow moving , opaque systems.
Well he's not wrong. (I mean he is wrong morally and so on, but he's definitely technically correct here). We've been too sick to fight for our slice of the pie the way aids activists did.
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