A quick SURVEY on COVID-19 & PMR/GCA/LVV Since t... - PMRGCAuk

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A quick SURVEY on COVID-19 & PMR/GCA/LVV Since the start of the COVID-19 pandemic have you experienced any of the following? Part 2

CandyHCandyHAdministrator381 Voters

Please select all that apply:

43 Replies
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CandyH
CandyHAdministrator

Dear all,

A bit more explanation on the survey -

The Survey is designed to obtain information on how the COVID-19 situation has affected those with PMR/GCA/LVV.

The results will be used by a group of clinicians, including Dr Sarah Mackie, to help make decisions on delivering better clinical services for patients during the ongoing COVID-19 situation.

All results are and will remain anonymous.

with best wishes,

Candy

Megams
Megams in reply to CandyH

~My 3 monthly bloods were due at beginning of lockdown 4 here in NZ. Was able to achieve this eventually - interesting results were pleasing :)

Regular gym visits replaced by making most of time with hubbie's presence at home with positive outdoor activities to keep mood elevated & mind off our closed business ~ I called it making "hay whilst the sun shone" despite it all ~

Having been on Tocilizumab injections throughout, I have only needed blood tests every 3 months ,I exercise by walking for an hour a day, and have not needed any other diagnostics or services.

Pippah45
Pippah45 in reply to Suzita76

I should probably have had blood tests but am avoiding the surgery and haven't been called.

I started one physiotherapy session in February but the guy was coughing his head off so I asked if he thought he was infectious - his reply? "Yes probably" so I hightailed it out of there - I didn't want to catch ANYTHING although at that point I wasn't really thinking Covid-19! I am very glad I left and was fighting something with mega doses of Vitamin C for about 10 days after that!

I had a blood test booked at the beginning of Lockdown , which the Practice Nurse phoned to cancel. I’ve just been told I can have one now, so it’s booked for next week.

maria40
maria40 in reply to Mindful3

I had an appointment for BT with GP last week and on the phone was given to understand that patients would be admitted to small waiting room one at a time. I arrived punctually and was surprised to find the waiting room already had 3 patients waiting who were soon joined by two more who were wearing masks on their chins! After 15 mins I said that I would take my BT slip to the hospital which has a walk in system but I'm now a bit unnerved and will perhaps wait as this is only my MOT for PMR/GCA.

I decided that I would isolate and not get this virus. After several week and feeling sorry for myself I started working out to get back in shape. The opportunity to rebuild after the 4 year of a PMR journey was a positive.

I was able to get a blood test with a telephone call with my doctor which was carried out at a local clinic , so that seemed very efficient .

Getting the result was more complicated as normal surgery routines are disrupted and they are extremely busy with phone calls .

Suzita76
Suzita76 in reply to lilypmr

Hi, Lily, does your surgery offer on-line services? I can access results of all tests within 24 hours by using the Patient Access app. on my phone. (My 91 year old mother now does this too - I had to talk her through it as she lives 125 miles away. It saves a lot of time “queuing” on the phone).

I know I am lucky to have such a forward-looking GP surgery, and I realise that this isn’t for everyone, but I find it brilliant.

lilypmr
lilypmr in reply to Suzita76

thank you, yes it does and I should have registered pre lock down .

But good advice for all . I will now register .

One of the greatest difficulties for both myself and my husband is that once Covid lock-down started, our hospital changed the dates of our appointments and also the mode in which the appointment with a consultant would be carried out (by phone rather than face to face). All their communication was sent by text - which we never got because we only have a land-line telephone. We are surprised that hospitals seem unaware that many elderly patients don't have mobile phones. If they looked at the phone number they would see that it is not a mobile number.

This rings such familiar bells. Hubby with vascular dementia just had cataract removal done privately - brilliant experience. Don't know where I am. Just soldiering on.

Ricardian

Any tests I needed I was able to get and the rest didn't pertain to me

I would tick the box: Those in the process of getting a diagnosis during lockdown, not with a rheumy who can't see their GP? Really stuck, forced to go private, don't know when I will get a nhs referral. Getting my info from this website and occasional private appts.

I’m replying at length because my husband didn’t fit the boxes above.

He had a bad flare up of his GCA, a week ago. About 6 months ago he had managed to come right off prednisolone, using Mycophenolate. It has taken nearly three years,

He spoke to GP by phone, and was sent straight to A and E where he got great immediate care and advice from A and E Consultant who was familiar with GCA. Only problem was then getting a phone discussion with the Rheumatologist, as he was so reluctant to go back on a big dose of Prednisolone, without other options being discussed.

It took a week to get that conversation. A week he wasn’t on the steroid.

I don’t think he got v different care, because of Covid (Rheumatologists are in v short supply here), but he was extra nervous going to A and E with his immunity compromised.

No problem getting a blood test.

Have been waiting since March for a scan on my liver.Also waiting since March to see a eye consultant as my cataracts are getting worse.

I am waiting for an echocardiogram (steroid induced heart problems dr thinks!). Have been told could be up to six months wait. Already waited ten weeks.

Access to GP most difficult,but BT okay when I decided I would attend

Doctor (GP) appointments are almost impossible. Physio cancelled for the rest of the year. Told would need to wait up to 2 years to see consultant. I feel it is every 'man' for himself now!

Husband has had great difficulty in getting help from audiology, which has been stressful for both of us as he needs hearing aids in both ears, and last Tuesday was completely deaf. After some pestering now has an appointment to have his ears syringed in 10 days time.

We have had great help with an isolation volunteer who has collected our repeat prescriptions.

Opthalmology at Ninewells have also been great.

I had a rheumatology registrar appointment just at the end of February. It seemed to be a tick boxes sessions and was short! Though he did want me to have a blood test which I had there and then. Haven’t been able to get the results of this nor the results of a Dexa scan I had last autumn, but suppose it was OK.

The physio session was over the phone and again seemed a bit like ticking boxes which I guess is all they can do.

Like someone else, I have just organised a blood test next week, approved of by my GP.

The rest of the above doesn’t apply to me.

I have been well looked after by my GP. All blood tests done. An MRI scan too. Not visited surgery to see GO, she telephoned me regularly.

I haven't responded to Part 2 as I am still undergoing diagnosis. That said, exercise is a problem due to pain and no possibility of physical assessment yet. First appt with Rhuematologist was 2 weeks before lockdown and 6 months after being referred. I am concerned at my pain response to Pred reduction, but had t/c with GP, who upped my dose and said Consultant was reducing by too much, too soon. Followed GP, and feel more in control. T/c appt with consultant who has organised bloods for SRA and Lupus...in less than a week!

healthy . no covid

Appointments by phone , have another pill, steroids and alendronic acid Resulted in two bouts of long AF.

I was diagnosed with GCA in May but symptoms so clear cut that there was no need for TAB or MRI. I did have an ultrasound and have had no difficulty getting blood tests and have seen my local GP and consultants at the hospital with no difficulty at all. I live in the HIghlands and have been very impressed with the service and my care so far.

Difficulty in getting a NHS DEXA Scan! Scan due in May was cancelled in July until further notice. Have had to pay privately to get it done as it was needed to decide whether to commence treatment for osteoporosis. I do!

My doctor suggested I get a blood test. The surgery were unable to do a test within 2 weeks as they were fully booked. Went straight down to the hospital went into pathology, waited no more than ten minutes, test done! Cannot complain about that. Absolutely brilliant. That's the NHS at it's best!!!

No problem getting blood test prior to the routine rheumatologist telephone consultation in April. Also needed to attend Ladies clinic, no problem. Surgery has excellent online services , including e-consultations which means you speak to a doctor next day. Incidentally, had a tooth extracted in June, no problem so I'm happy with health care here in West Sussex.

Most of these questions were N/A as I was diagnosed in the early days of the virus. Thereafter I have had no problem administering my own care including taking blood pressure and glucose readings at home with an occasional telephone consultation with my GP and rheumatoligy dept. As far as exercise is concerned I did go to the gym very regularly prior to lock down 8- classes a week but since lock down I have been walking every day and doing exercise at home for jaw and shoulder strength and resting when necessary. All in all I am sleeping much better due to more fresh air and I think I may continue with this new way of life even if/when we find a cure for Covid.

The first four items have not been done for this particular illness for two years.

This survey needs an 'other' option. I have been waiting for a postponed follow up consultant appointment since March

Last Doctor not interested in what I had to say most people have pain shoulders, hips neck extra. Go up on the steroids. Doctor before wanted me off the steroids, after going down to 3 mg unable to sleep because of the pain and function properly in the day this is not quality of life. I don’t think most of them know anything about the condition.

I live in the states so no problem in getting any procedures if needed..

I have not needed a temporal artery biop.

In terms of what is to come for us in the provision of medical services I’d like to add the following. I would deeply regret it if telephone and video consultations became the normal methods of communication. There is nothing like seeing a doctor in person, reading their body language and enabling them to read yours. And I think that a doctor can learn a great deal from a seemingly throwaway comment from a patient as the patient leaves the room - a bit like the post scriptum in a letter that is really what the letter is all about! I should be interested to know what doctors feel about this in terms of their own experience and job satsfaction.

Our GP surgery has been very efficient, blood tests have been done to check my inflammation levels, kidney function and thyroid. GP's have been very supportive and understanding throughout, even advising us not to move, although we were on the verge of exchanging contracts. The Rheumy department also advised not to move , so staying put in the countryside. Not so bad!! They have also been very helpful and supportive.

Lots of walking, gardening to help keep me mobile even during the "wobbly" times.

I’ve been told my bloods check (PMR) has to wait until October/November. Have since learned that local health service is ‘rationing’ blood tests to save money!

My game is golf so fortunate there, as the courses were quick to open after lockdown.

I am in USA, and, fortunately I have not needed any testing during this time.

Good Morning, I broke 2 bones in my foot just by standing up from my chair on January 16th. My local hospital the Royal Berks put me forward for a dexa scan, which I have never had since the start of my PMR.

9 months later I have just got the appointment through for the end of September. I have tried to be very careful in those 9 months for fear of osteoporosis!

I haven't ticked 'difficulty in..' getting various scans but there were delays. Recently I have caught up with hospital echocardiogram, CT, DEXA. I did not have contact with my Rheumatologist in the early days after lockdown but was always able to alert the Helpline. Telephone consultations have now started with the consultant, they are very helpful. Blood tests through my local GP have gone on throughout at the surgery. Prescriptions were collected by a great NHS volunteer. I now collect them myself following the end of shielding. Next to come is a flu jab mid Sept. All round, everyone does the best they can. Best wishes with the survey.

No problems accessing local GP for blood tests, though consultations now by phone instead of face to face, which I have no problem with. But rheumatology and opthamology appointments have been cancelled or postponed due to Covid, to be reinstated eventually when things normalise. A rheumatology appointment was changed by me from face to face to a telephone consultation, to avoid having to use public transport.

I usually get a letter from the hospital as I have a blood test every 8 weeks. Since Covid I have to contact the hospital. Once the request is on the system though, I have no problem in booking an appointment.

No Problems thank you