More notes on the UCH hypermobility clinic
Feb. 4th, 2016 03:36 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
kaberett(I am kind of baffled by how smoothly and rapidly this is all going: I was initially supposed to have my first appointment on the 8th of March, but due to a steady stream of late cancellations I've thus far had an initial assessment and one session of hand therapy, and will be having at least one more session of hand therapy and an information/education session before my the theoretical date of my first appointment ever rolls around.)
Initial assessment. This was on short notice, I didn't get a letter, and I didn't really know what to expect: this meant I had quite a lot of anxiety about it, because fundamentally I go into every single new medical relationship expecting things to be bad. (First pain clinic appointment, e.g.) And it was... fine. Actually finding where it was located was a bit Interesting -- you go up to the first floor of Outpatients, ask the front desk where such-and-such's clinic is today, and get sent into a maze of twisty-turny passages, all alike -- but once I was settled in the waiting area things sort of... worked. After a little while someone (who turned out to be the physio who would be assessing me) handed me a clipboard with some intake questions (what medications I was on; whether I'd had surgery; what I'd like to discuss), and a little while later I got called in to a relatively large room by the physio.
The first part of the assessment involved a lot of talking through my medical history, where I experienced pain, and what problems I'd like to address. The fact that I was wearing ring splints wasn't a problem at all: I explained I'd been loaned them by a friend to try out, and was asked whether they helped, and believed when I said they did and gave details. I was also asked why I used the wheelchair and who'd paid for it (standard questions that nonetheless mean all the wheelies reading are wincing, I promise you), but when I said that from my perspective it was largely because of the endometriosis and associated neuropathy no further questions were asked (beyond asking whether I'd had nerve conductance studies done with respect to the neuropathy, with the clarification that they didn't disbelieve me about the pain and it wasn't that whoever diagnosed me should necessarily have done the studies, it was just useful for their notes). They very, very pointedly did not go anywhere near trying to convince me that I shouldn't be using a chair -- when the physio called in Dr Kazkaz, the head of clinic, she made a point of emphasising that the chair was because of endometriosis. Given past experiences, the bit where they were treating the entire topic of "trying to convince me I shouldn't be using one" as emphatically off-limits was very, very reassuring.
The physio -- Sophia -- also made a point of repeatedly saying that she didn't want me to do anything that would hurt or that I wasn't comfortable with, and telling me at each step of the physical assessment what she wanted to do or was going to do, and what she was noticing or recording. She minimised actually touching me: a lot of the assessment involved asking me to do things and watching as I did them rather than manipulating me.
For the physical assessment I offered to remove both my shirt (I was wearing a vest binder) and my trousers; this was helpful but would not have been necessary if I wasn't comfortable. I was asked to walk up and down the room using my whole foot (as I would in the absence of remembering to do all the things I've been told about in physio, and as I would while paying attention to where my joints were going), on tiptoes, and on my heels. I was asked to raise my arms in various directions and demonstrate elbow hyperextension, double-jointedness in my fingers, and touching my wrists with my thumbs (it was obvious that I would have been believed if I'd said I didn't want to demonstrate those last two, but that I could do it and could describe it). She also tested my skin (pinching gently and pulling on the back of my hands and on my elbows), how far back my fingers would bend, and examined my scars and stretch marks. I was asked to sit on the examination bed, and had my reflexes (knee/ankle) tested by tapping; and to lie on the bed, whereupon I was asked to raise my legs, and Sophia tested the hyperextension of my knees, ankles, and hips. I subsequently returned to standing, at which point she checked the extension of my shoulders. I was also asked to open my mouth (and totally forgot to do so the pathological way, instead of doing it the way I've carefully learned doesn't damage me, so that's on my list for next time!).
Partway through, Sophia fetched Dr Kazkaz, who answered my questions about how to handle the respiratory side of things and also carried out a quick repeat of some of the physical exam. I explained about the lungs situation, and that my GP and I hadn't been sure where to send me to get it investigated but thought that the hypermobility clinic team would probably have seen it before and know what to do; they said that while it did sound like I was presenting with defective pulmonary collagen that was more of an autoimmune thing than a them-thing, so they'd sort out a suitable referral. I was not made to feel bad for having sought advice from them on the topic and taken up their time with it.
After the exam I got dressed again and returned to my chair. We ran through a few more questions. Sophia explained that she was scoring my very strictly on the Beighton scale and was giving me 4/9, but she wanted to be clear (because some patients worried about it) that this absolutely did not affect the fact that I was being given a formal diagnosis of hypermobility-type EDS (classic and vascular types were carefully excluded based on symptoms and family history). We then talked through next steps. I was told that as I was clearly pretty well-informed on the topic attending an information/education session was optional, but if I'd like to go along they were two-hour afternoon sessions; we negotiated a time that would work for me (I was given February 19th instead of March 7th when I pulled a face and said I might have to attend court as a witness on the 7th). She also informed me that they'd sort out referrals to hand therapy, podiatry, and respiratory, and that they'd do whole-body physio in clinic, with dates for that to be arranged. I was emphatically reassured that I could tell the DWP that I had a hEDS diagnosis, and that I could and should show them all the letters the clinic sent me. It was... actually really fantastic.
Hand therapy. Hand therapy's in the basement of UCH, rather better signposted than the hypermobility clinic itself. I was called in and introduced to my therapist; he said that the hypermobility clinic had sent me down with a rather vague referral and there weren't any notes on me in the system, so the first thing he was going to do was take a history, get a sense of who I was, and ask me what I wanted. We ran through all the normal stuff about what my work is and what my social support network is like; we ran through my medical history; and we talked about the specific problems I have that I would like to reduce (knitting, typing, playing music, cooking...). He tested my grip strength in several permutations, did a thorough physical examination of my hand, and then started throwing kit at me. Again, the fact that I'd shown up wearing ring splints and could say I'd been finding them useful wasn't a problem: he just used them as a shortcut to getting the correct sizing for me. I ended up leaving with:
Things that we are going to discuss at my next appointment include appropriate thumb splinting for use while pipetting in clean labs, a more detailed exercise regime, and possible splinting of the top joints of my index fingers. The only wrong note in this assessment was when I was asked (before he started touching me!) if my hands hurt at all: I looked thoughtful, and was cheerfully told that if I was having to think about it the answer was no. I explained that I'm actually on non-trivial maintenance painkiller doses and everything hurts and that I'd been trying to work out what in specific was wrong and how to describe it; he backed off and accepted the correction in good grace. He was also subsequently careful to ask if anything was painful and what kinds of pain I was getting.
Summary. Yeah, I just... yeah. This can stay.
Initial assessment. This was on short notice, I didn't get a letter, and I didn't really know what to expect: this meant I had quite a lot of anxiety about it, because fundamentally I go into every single new medical relationship expecting things to be bad. (First pain clinic appointment, e.g.) And it was... fine. Actually finding where it was located was a bit Interesting -- you go up to the first floor of Outpatients, ask the front desk where such-and-such's clinic is today, and get sent into a maze of twisty-turny passages, all alike -- but once I was settled in the waiting area things sort of... worked. After a little while someone (who turned out to be the physio who would be assessing me) handed me a clipboard with some intake questions (what medications I was on; whether I'd had surgery; what I'd like to discuss), and a little while later I got called in to a relatively large room by the physio.
The first part of the assessment involved a lot of talking through my medical history, where I experienced pain, and what problems I'd like to address. The fact that I was wearing ring splints wasn't a problem at all: I explained I'd been loaned them by a friend to try out, and was asked whether they helped, and believed when I said they did and gave details. I was also asked why I used the wheelchair and who'd paid for it (standard questions that nonetheless mean all the wheelies reading are wincing, I promise you), but when I said that from my perspective it was largely because of the endometriosis and associated neuropathy no further questions were asked (beyond asking whether I'd had nerve conductance studies done with respect to the neuropathy, with the clarification that they didn't disbelieve me about the pain and it wasn't that whoever diagnosed me should necessarily have done the studies, it was just useful for their notes). They very, very pointedly did not go anywhere near trying to convince me that I shouldn't be using a chair -- when the physio called in Dr Kazkaz, the head of clinic, she made a point of emphasising that the chair was because of endometriosis. Given past experiences, the bit where they were treating the entire topic of "trying to convince me I shouldn't be using one" as emphatically off-limits was very, very reassuring.
The physio -- Sophia -- also made a point of repeatedly saying that she didn't want me to do anything that would hurt or that I wasn't comfortable with, and telling me at each step of the physical assessment what she wanted to do or was going to do, and what she was noticing or recording. She minimised actually touching me: a lot of the assessment involved asking me to do things and watching as I did them rather than manipulating me.
For the physical assessment I offered to remove both my shirt (I was wearing a vest binder) and my trousers; this was helpful but would not have been necessary if I wasn't comfortable. I was asked to walk up and down the room using my whole foot (as I would in the absence of remembering to do all the things I've been told about in physio, and as I would while paying attention to where my joints were going), on tiptoes, and on my heels. I was asked to raise my arms in various directions and demonstrate elbow hyperextension, double-jointedness in my fingers, and touching my wrists with my thumbs (it was obvious that I would have been believed if I'd said I didn't want to demonstrate those last two, but that I could do it and could describe it). She also tested my skin (pinching gently and pulling on the back of my hands and on my elbows), how far back my fingers would bend, and examined my scars and stretch marks. I was asked to sit on the examination bed, and had my reflexes (knee/ankle) tested by tapping; and to lie on the bed, whereupon I was asked to raise my legs, and Sophia tested the hyperextension of my knees, ankles, and hips. I subsequently returned to standing, at which point she checked the extension of my shoulders. I was also asked to open my mouth (and totally forgot to do so the pathological way, instead of doing it the way I've carefully learned doesn't damage me, so that's on my list for next time!).
Partway through, Sophia fetched Dr Kazkaz, who answered my questions about how to handle the respiratory side of things and also carried out a quick repeat of some of the physical exam. I explained about the lungs situation, and that my GP and I hadn't been sure where to send me to get it investigated but thought that the hypermobility clinic team would probably have seen it before and know what to do; they said that while it did sound like I was presenting with defective pulmonary collagen that was more of an autoimmune thing than a them-thing, so they'd sort out a suitable referral. I was not made to feel bad for having sought advice from them on the topic and taken up their time with it.
After the exam I got dressed again and returned to my chair. We ran through a few more questions. Sophia explained that she was scoring my very strictly on the Beighton scale and was giving me 4/9, but she wanted to be clear (because some patients worried about it) that this absolutely did not affect the fact that I was being given a formal diagnosis of hypermobility-type EDS (classic and vascular types were carefully excluded based on symptoms and family history). We then talked through next steps. I was told that as I was clearly pretty well-informed on the topic attending an information/education session was optional, but if I'd like to go along they were two-hour afternoon sessions; we negotiated a time that would work for me (I was given February 19th instead of March 7th when I pulled a face and said I might have to attend court as a witness on the 7th). She also informed me that they'd sort out referrals to hand therapy, podiatry, and respiratory, and that they'd do whole-body physio in clinic, with dates for that to be arranged. I was emphatically reassured that I could tell the DWP that I had a hEDS diagnosis, and that I could and should show them all the letters the clinic sent me. It was... actually really fantastic.
Hand therapy. Hand therapy's in the basement of UCH, rather better signposted than the hypermobility clinic itself. I was called in and introduced to my therapist; he said that the hypermobility clinic had sent me down with a rather vague referral and there weren't any notes on me in the system, so the first thing he was going to do was take a history, get a sense of who I was, and ask me what I wanted. We ran through all the normal stuff about what my work is and what my social support network is like; we ran through my medical history; and we talked about the specific problems I have that I would like to reduce (knitting, typing, playing music, cooking...). He tested my grip strength in several permutations, did a thorough physical examination of my hand, and then started throwing kit at me. Again, the fact that I'd shown up wearing ring splints and could say I'd been finding them useful wasn't a problem: he just used them as a shortcut to getting the correct sizing for me. I ended up leaving with:
- Oval-8 thermoplastic ring splints for one knuckle on each finger, and a willingness to consider splinting the top knuckle on my index fingers as well
- Promedics wrist splints for sleeping in (I had a pair of wrist splints for this that I was prescribed when I was about 14 but I'm basically never compliant with them for sensory reasons; this pair is less bad for that)
- Promedics neoprene thumb splints for use while wheelchairing, because one of my thumb joints has started to go quite wrong while doing that, along with an explanation of what it is that has been going wrong (I was offered a longer version that gave more wrist support or the short version I ended up with: I got to try both on, and was explicitly encouraged to take into consideration how autism + sensory issues would affect compliance)
- a block of memory foam to do very gentle grip strength exercises with (I might be allowed to graduate to firmer ones once they don't hurt any more)
- an appointment for a fortnight's time
Things that we are going to discuss at my next appointment include appropriate thumb splinting for use while pipetting in clean labs, a more detailed exercise regime, and possible splinting of the top joints of my index fingers. The only wrong note in this assessment was when I was asked (before he started touching me!) if my hands hurt at all: I looked thoughtful, and was cheerfully told that if I was having to think about it the answer was no. I explained that I'm actually on non-trivial maintenance painkiller doses and everything hurts and that I'd been trying to work out what in specific was wrong and how to describe it; he backed off and accepted the correction in good grace. He was also subsequently careful to ask if anything was painful and what kinds of pain I was getting.
Summary. Yeah, I just... yeah. This can stay.
(no subject)
Date: 2016-02-04 03:40 pm (UTC)(no subject)
Date: 2016-02-04 04:12 pm (UTC)I hate that this is a thing we are conditioned to be excited about, when it should be fine to ask questions. However, I am also relieved and glad for you that this was a thing! Yay! Good appointment all around.
(no subject)
Date: 2016-02-04 04:33 pm (UTC)But gosh it was a relief.
(no subject)
Date: 2016-02-04 06:58 pm (UTC)So glad you had competent and respectful medical care.
(no subject)
Date: 2016-02-04 07:48 pm (UTC)I absolutely winced!
Good, but the pessimist in me wonders if they would have backed off given an answer that it was the hypermobility? (Which would be the answer I'd have to give).
Wheeling! ;)
But overall that sounds really positive.
(no subject)
Date: 2016-02-05 11:48 pm (UTC)(no subject)
Date: 2016-02-06 01:56 am (UTC)Checking preferences first is definitely a good sign.
(no subject)
Date: 2016-02-04 08:44 pm (UTC)(no subject)
Date: 2016-02-04 09:35 pm (UTC)also glad you had a good experience.
<3
(no subject)
Date: 2016-02-05 11:49 pm (UTC)(no subject)
Date: 2016-02-04 10:14 pm (UTC)(no subject)
Date: 2016-02-05 09:50 am (UTC)(I almost wonder about getting referred back for further assessment given my current circumstances are very different than when I first went to see them, but I don't know if they do that sort of thing or whether my current GP would refer me.)
(no subject)
Date: 2016-02-05 11:50 pm (UTC)(no subject)
Date: 2016-02-05 12:45 pm (UTC)(no subject)
Date: 2016-02-05 04:57 pm (UTC)(no subject)
Date: 2016-02-05 07:17 pm (UTC)(no subject)
Date: 2016-02-06 06:27 pm (UTC)On topic, I'm glad it went so well!
(no subject)
Date: 2016-07-21 05:14 pm (UTC)