Notes on the pain clinic education session

[kaberett]

• At our point of arrival, they went round the group quietly handing out sticky labels with our names and hospital numbers on. Except that, just like every single other interaction I've had with the NHS since changing my name, they used my first forename rather than my third forename. My third forename bloody ought by now to be recorded absolutely everywhere as my preferred name, but it took Asserting and Not Meekly Backing Down to get them to rewrite it with my actual used name on. On the plus side, I did actually Assert? I had a brief moment of vertigo, of the "do I just grit my teeth and go along with it, or do I calmly and politely insist that they treat me like a human", and they briefly tried to insist that my name badge had to "be consistent with my hospital records", but... we worked it out. And I got a badge with my used name on it. (I want to flag up that this isn't "just a trans issue": my mum and I frequently commiserate over using our third names rather than our first names and the ways people are crap about it, and there are regular stories about wallet-names rather than use-names getting currency in hospitals and causing people confusion and upset.)
  
• There had been miscommunication with several patients: they'd been told, when booking in to the education session, that they'd be allowed carers with them. On the door, they were told that the (four-hour) session itself was patient-only, but carers were welcome to wait outside. Now, I can see the arguments for having the session be patient-only, but I think it's a kind of awful breakdown in communications that people were only told this after having travelled to the hospital, arranged to take the time off, etc.
  
• I was using my wheelchair. There were two rows of chairs set out in the room, occupying almost the entire width. There was no obvious space for me to sit. I ended up sitting the aisle at one end of a row. Nobody offered to move one of the chairs so I could slot in more easily and be less peripheral. Even if they hadn't known in advance that I'm a wheelchair user (which, er, given the consultant's disparaging comments about same I am slightly surprised about), they did have us sitting outside the room for 15 minutes before going in, and it would not have been beyond the realms of human achievement to, um, make a space for me. Or to offer once we'd got in.
  
• The one big useful thing I took away from the session actually had nothing to do with pain, and everything to do with why I wake up at two-hourly intervals for my first week or two sleeping (solo) in a new place.
  
• Quite a lot of the things they recommend I am already doing, so I suppose that's reassuring?
  
• I have possibly worked out some of the miscommunication with the consultant, in that when he asks "what is your pain like" I am going to give a full catalogue of everything related to endo, including acute stuff, and then he tries to tell me that it's all chronic, and things explode. This does not excuse everything he did and said, but possibly lays ground for future interactions being a bit more helpful

Comments

[untonuggan]

That sounds...um...interesting. I am still facepalming that no one moved a chair for you, but given pain doctor's attitude maybe it is not surprising? Hoping that the things you got out of it were at least worthwhile.

All the best wishes going your way!

[pretty_panther]

That is terrible that they didn't make room for your wheelchair. I'm furious o.O

It is good that what you're doing is the general idea though. That is what I found on the confidence building course. It was nice to get the reassurance that I'm doing what the professionals think is the right idea...even if they can be wrong and often are. It still comforts I guess.