Assessing the Impact of COVID-19 on Rheumatology ... - PMRGCAuk

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Assessing the Impact of COVID-19 on Rheumatology Care - Online Survey

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44 Replies

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."

surveymonkey.co.uk/r/NSDTGHG

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44 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I’ve answered it although not directly involved with Rheumatology any more. But as it let me carry on - I did!

Longtimer profile image
Longtimer

Have filled it in....

Nerak12 profile image
Nerak12

Hi. Thanks for the link. I have completed the survey.

JGBH profile image
JGBH

I have completed the survey. Am rather concerned they are planning to reduce face to face appointments which is not a good idea. Thanks for the link.

11caroline29 profile image
11caroline29

Any type of appointment would be good at the minute as not seen by Rheumatology in 10 months!

PMRpro profile image
PMRproAmbassador in reply to11caroline29

Not impressive is it?

11caroline29 profile image
11caroline29 in reply toPMRpro

Really poor situation all round.☹️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

No it’s not - and the questions seem to imply that phone and video appointments are going to be the norm well after Covid-19.

Fine for some things, but not for everything- especially early days.

scats profile image
scats in reply toDorsetLady

I have a virtual physio appointment in 2 weeks. I think I will have to get someone else to hold the phone, my arms aren't long enough!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toscats

That sounds fun! 🤦🏻‍♀️

scats profile image
scats in reply toDorsetLady

That's what I thought.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toscats

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.

scats profile image
scats in reply toDorsetLady

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.

How is the shoulder now?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toscats

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! 🏋️‍♀️

scats profile image
scats in reply toDorsetLady

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.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toscats

Well at least you won’t get lost!

scats profile image
scats in reply toDorsetLady

I don't know, it's been a while since I got this far......

PMRpro profile image
PMRproAmbassador in reply toscats

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.

scats profile image
scats in reply toPMRpro

I did get f2f in hospital. I'm not sure what this is supposed to achieve

PMRpro profile image
PMRproAmbassador in reply toscats

Check how you are doing? How ARE you doing?

scats profile image
scats in reply toPMRpro

I'm sleeping a lot more than usual but mostly fine thanks.

It's lovely to wake up each morning and find the pain is no longer there, but the wound has been painful today.

PMRpro profile image
PMRproAmbassador in reply toscats

But that is acceptable pain because it WILL get better whereas the old pain just got worse ...

scats profile image
scats in reply toPMRpro

That's how I see it

DogAgilityObsessed profile image
DogAgilityObsessed in reply toscats

I had one of those pre dx. It was only useful in that I did what the physio said and it got me a F2F gp appointment 6 weeks later.

But in terms of physio pretty hopeless

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

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.

Bcol profile image
Bcol in reply to11caroline29

Not seen a doctor yet, let alone, a rheumy!!

Marijo1951 profile image
Marijo1951

Thank you for bringing this to our attention. I've completed it and sent it off.

Sefu profile image
Sefu

Done thanks.

RoadTrip profile image
RoadTrip

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!

telegraph.co.uk/news/2020/0...

MrsNails profile image
MrsNails

Done ✅

Telian profile image
Telian

Completed ✅

ChinaWuntoo profile image
ChinaWuntoo

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.

maria40 profile image
maria40

Completed.

Suet3942 profile image
Suet3942

I’ve done it thanks. As someone else mentioned pmr is not even listed!

PMRpro profile image
PMRproAmbassador in reply toSuet3942

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.

Umufu profile image
Umufu in reply toPMRpro

Would happily have only the poor relation, but greedy me took both.

Completed the form.

MrsNails profile image
MrsNails in reply toSuet3942

Always the Poor Relation or an Afterthought!

PMRpro profile image
PMRproAmbassador in reply toMrsNails

Or even "all in your head" ...

MrsNails profile image
MrsNails in reply toPMRpro

As If? 😂🤣😂

Hey, GP admitted the Sweating 🥵 ie puddles of perspiration are in fact Physiological ~ so there’s a First! 😉

Blossom20 profile image
Blossom20

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...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBlossom20

If your GP is well informed about it, and your illness is relatively straightforward, you are probably better off with GP.

Jackoh profile image
Jackoh

Done!

Lochy profile image
Lochy

Done.

tangocharlie profile image
tangocharlie

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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