This has just been posted on the LupusUK forum by Paul Howard from the LupusUK charity. I checked and it is a general rheumatology survey although only for the UK - so more opportunity to help improve the offer.
"Hi everyone,
A group of doctors and researchers from University College London are trying to learn more about the impact the pandemic has had on rheumatology services.
If you are in the UK, please spare 10 minutes of your time to complete this survey and help shape how future care is provided."
Just an update - I ran out of "time" for physio after shoulder op - C-19 et al.
I did receive a phone call from therapist - who said just keep doing the exercise you are doing! Also had a phone call from surgeon who said similar! Neither particularly helpful.
Both said we'll keep you on the books for 3 months - well that didn't really work either, did it?
I do feel lack of proper physio has hampered my shoulder rehab - trouble is I can only compare to knee and hip rehab, not other shoulder - and of course no Pilate sessions until last few weeks.
Thanks for that. Last time I did see a physio, but wasn't impressed, he asked me to show how I do the exercises and watched me walk to assess my gait. Perhaps all that is needed is to continue the muscle strengthening in most cases.
OH is already looking forward to being camera man so that I can demonstrate my gait.
I've just heard that next month's rheumy appointment will be by phone too, but as I've yet to be examined by one, I probably won't be missing much.
coming along - but slowly. Can lay on it no problem, and forward and backward relatively okay - trouble is lifting arm above head. ..okay if I use a walking stick or broom handle as a prop and other arm is helping or lying down - but on it's own and gravity involved- still ouch!
Need more work on the triceps I think... but we'll get there eventually.
Trouble is, I think with hips or knees you are walking about all the time, even indoors so they are ways being exercised, whereas you don't spend all day with your arms in the air! 🏋️♀️
It's the same movement that takes time with the hip, you'll get there. I've just managed to walk to the end of our drive, a bit further each day, back to what I've been doing for the last 4 years. I should be good at it soon.
Now physio like that is a piece of nonsense - but in the UK they do tend to just tell you what to do. The phsyio service here is overloaded but when it is needed for rehab, you do get it f2f and mostly in a timely manner. Covid just delayed it for the people who got caught by the start - they are being caught up with now.
Exactly - I can see advantages in that it will deal to a great extent with the time wasters who make an appointment and don't turn up. But having to go through multiple levels when you really do need emergency advice is going to put a further load on the EDs.
Seems they want to do everything by telephone or video now, very disappointing.
My first rheumatologist appointment is mid October, by telephone of course. I may be lucky given this article seen in The Telegraph, where phone appointment is 2022!
Well, I gave up (may go back later) as a protest when I found that PMR is not mentioned, (even under 'Vasculitis). That confirms my prejudices about rheumatology. There also is no time scale that I have found. I may do it after my rheumy appointment on Friday.
Sbould be GCA and PMR combined of course - but PMR is always the poor relation. Probably because they think once you are on pred that's it and you are always discharged to the GP.
I'm still waiting to get my first Rheum appt....they seem to be not answering the phone at all! But after reading all the awful experiences people seem to have with Rheumies I am reluctant to go! Seems better to manage it myself with the help of this forum and the Gp...
Done. My situation is a bit complicated in that I need to go to hospital for the depo medrone injections every month but otherwise would be OK with phone calls. Generally I'd actually prefer the phone to F2F, I feel more in control over the phone. I think the system my GP uses of triaging everything by phone and then they decide if you need to come in works well. Probably cuts down on the no-shows too, and I'm told nearly a third of appointments were no-shows before which is scandalous and rude of people.
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NHS assesses risk of Covid-19 infection in rheumatology patients
Cambridge University rheumatology survey, particularly keen to hear from people with PMR
