Rheumatology Clinic

[Josephine13halffull]

Does anyone have any idea when the Rheumatology Clinics will be up and running again?.

[Boxerlady]

Hi Josephine.Not quite sure what you mean as I've had phone appointments throughout the lockdown and even had three f2f appointments - with rheumy nurse to assess my joints, OT to get some brace/compression gloves advice and a proper consultation with a rheumy in November (postponed from May).

I realise that I've been luckier than some but have you missed out on assessments/treatments?

[Wobbies]

I have had 2 f2f appointments and 2 phone appointments during lockdown but everything was slower because the staff were working on covid wards half of their time. Seem to be working again now but using phone appointments still. Hope that does not become the norm.

[Soundofmusic52 in reply to Wobbies]

I have appointment this Thursday first one in 12 months 👏👏

[Sunnyspells]

Some people seem to have been lucky! I was due an appointment in about April last year and have had no contact apart from ordering my repeat prescriptions.

[Lizard28]

I havnt seen my consultant for over a year now but had to see my GP because I was in so much new pain. He put in an urgent referral to see her. A few days later I got a call from hospital to come in to the “hot” clinic it was called. To be honest the doctor only had one other patient in the waiting room and my appointment was 2 hours late. She looked like a newly qualified doctor and was very nice and sent me for bloods, said she was going to get an ultrasound done and refer me for a biopsy and would phone me in a few days with results. 3 weeks later I’m still waiting till a letter came in to come into hospital to see my consultant (hopefully) I have to wait another 3 weeks again, but I guess for a rheumatologist that’s prob her urgent appointment list. Meanwhile I’m buying useless painkillers, my GP did give me a short course of steroids hoping rheumatologist would sort me out. Are they sending you to these clinics to suss out who needs to see the consultant, I’m at a loss. I won’t be happy if it’s another useless doctor I see.

[cathie in reply to Lizard28]

Ultrasound might be standard ra test. I think it’s needed before prescribing biologics. I’ve just had second phone consultation under lockdown. Not happy, I don’t know how to answer the pain question. I’ve had RA for 22 years now and am used to pain and stiffness in a way I wasn’t before. And consultant needs to see what’s happening to your joints. The biologic infusion suite has been going throughout and I’d have thought consultants could see a few patients now.

[Lizard28 in reply to cathie]

I hope things change in the near future, it can’t go on like this, I had a call from my GP and after 15 minutes he asked if I can come down to see him, that’s when he said he would refer me urgently to my consultant. I guess My GP is doing all he can, but where have all the consultants gone?

[Josephine13halffull in reply to Lizard28]

Not a clue. Appointments were starting to be hit and miss before the Pandemic.

[Barrister]

I haven’t had a f2f appointment since December 2019 and my next appointment, booked for December 2021 is a telephone appointment!

Clemmie

[Bookworm55 in reply to Barrister]

Similar here

[Mandalou in reply to Barrister]

Same here Clemmie. Last face to face was August 19 then my 6 monthly was a phone call in March 20 . It was from one of the Consultants in the Team. He told me to swap 8 weekly blood tests for 12 weekly. ( done by GP)

Told me to phone the rheumy nurses if I had any issues and that was the last I heard from anyone.... zip nada!

Its like being discharged but still getting the drugs delivered!

If no one gets in touch saying come to see us it will be two years by the summer.

I know RA isnt going to kill us today or even tomorrow but I would like a check up to see what the latest damage is to my feet. Explain Im getting feelings of buzzing inflammation in my knees and talk about waves of finger pain.

I will ring if I dont hear anything by August.

All the best to you

Mx

[Jillyanne]

Haven’t seen or heard from a nurse for about 2 1/2 years , did speak to Rhuemy in January 🙄🙄. No the best 😢😢

[Downtime]

My goodness that is awful where do you live? I presume if things weren’t going well you could speak to the nurses and get an appointment to discuss treatment options? I feel lucky here as nothing really changed during the pandemic. I had a phone appt and a couple of ftf . Just one cancellation when my rheumatologist had Covid.

[Knittinggirl]

Hi my last appointment was January last year I’ve had 2 booked appointments cancelled since then my consultant wrote to stop humira due to low nuerophil count and have spoken to rheumatology nurse about blood test results each month and discovered my consultant has left ! Spoke to nurse and new dr on phone to have leflunomide also stopped and possibility of steroids if blood test results improve the nurse did say they were looking at rearranging appointments this month but wouldn’t be face to face clinics I feel very neglected and deserted really

[jezebel53]

Hello Josephine, I've just had a f2f appointment this week and 2 phone appointments and one f2f during lockdown, I expect some are luckier than others and the area you live can make a difference too, regarding covid cases etc.

[Fra22-57]

I had my annual appointment other week.Didn’t have weight ,urine or blood pressure taken like normal but otherwise the same.I had to go to pathology for bloods taken.that was different as had to return an hour later as given a set time.I would contact your rheumatologist for an appointment

[Jillyanne in reply to Fra22-57]

Wow, I have never had urine or my blood pressure taken 😳😳

[BoneyC]

I had telephone Rheumatology and Upper Limb Orthopaedic appointments last week and received a clinic appointment for Rheumatology to attend in person at the hospital, in November 2021.

[Scottishlad]

In NHS Grampian since lockdown I have had one appointment with the biologics nurse and have and am due to see my consultant next month (about 14 months since my last appointment with her).

[helixhelix]

That is awful! My medical care has been completely normal - apart from one apt with rheumy being on video rather than F2F.

I guess this is a reflection of priorities in different areas between throwing everything you’ve got at Covid and keeping business as usual going.

[AgedCrone in reply to helixhelix]

But you are in France hh aren’t you?Completely different ballgame here in the UK I’m afraid.

[helixhelix in reply to AgedCrone]

That’s why I say a reflection of different priorities. Here they have bust a gut to keep services going, even if covid patients have had to be shipped off to Germany. And the vaccination programme here is poor compared to UK. But other things are ok.

[AgedCrone in reply to helixhelix]

Yes we are very, very fortunate with our vaccination programmes and we are very sensible as well - because we shall be shipping the vaccines to poorer countries.It’s amazing how large rich countries don’t understand that while the virus continues to proliferate in any other country it’s bound to hit their country sooner or later.

[helixhelix in reply to AgedCrone]

France has already shipped out doses of Astra Zeneca to Slovakia. With so many land borders the EU countries are very alert to this.

[AgedCrone in reply to helixhelix]

As Macron does not seem too keen on the AZ vaccine.....one wonders what they think?

[helixhelix in reply to AgedCrone]

Not just Macron! It’s had so much bad publicity that it is not popular.

[AgedCrone in reply to helixhelix]

I had it & had a bad reaction....but I think not as bad as Covid would be at my age....at least I’m still standing!

[Knip]

I have an appointment at the hospital RA department tomorrow for pre new drug checks and I have a dermatology appt booked for September so, I think, barring any further variants of the virus causing chaos, a limited face to face service will be back in place. ObviousIy they won't be able to see as many patients as before because of cleaning between each one. I have had telephone appointments in the meantime.

[Josephine13halffull in reply to Knip]

My appointments were being reduced before any sniff of a Pandemic.

[Summerrain14]

It makes me really sad that so many people have not had ongoing care through the pandemic.

I have been so lucky. I have had three face to face appointments and four telephone appointments with my rheumatologist and many calls with my rheumy nurses throughout the pandemic. Also had appointments with physio and for hand and wrist splints.I have had four medication changes and on biologics now. I am so appreciative of all the care I have had and continue to receive. Really wish this was the same for everyone. x

[Josephine13halffull in reply to Summerrain14]

Sadly it isnt. Before the pandemic my twice year appointment was reduced to once a year.

[Summerrain14 in reply to Josephine13halffull]

It is so bad how much our health care varies depending where we live and even down to our rheumatologists. I have very active RA at the moment and have done since the start of the pandemic so appreciate just how lucky I am to be receiving such good care. It delayed my move onto biologics as the teams were given strict guidelines to the medications especially at the start of the pandemic. I have heard of people who have not been able to have their meds changed and refused steroid injections and tablets too. Just awful how so many people have been left without the appropriate health care in all areas of health care. Do you have a rheumatology advice line or the medical secretary’s phone number as a gentle reminder to them wouldn’t hurt as you have not been seen in two years. x

[Josephine13halffull in reply to Summerrain14]

There is contact a number but no appointments.

[Evaflo10s]

I’ve had three f2f appointments with consultant , one MRI and four telephone calls .

Crazy how much it varies !

[Josephine13halffull in reply to Evaflo10s]

I've had 2 cancelled appointments no phone calls and I haven't seen the Rheumatologist or one of his colleagues for almost 2 years.

[Evaflo10s in reply to Josephine13halffull]

That’s terrible

[Josephine13halffull in reply to Evaflo10s]

It is. I was diagnosed with Rheumatoid Arthritis 20 years ago, maybe as you get older you drop off the radar?. Who knows.

[Summerrain14 in reply to Josephine13halffull]

That’s awful. I am so sorry that you have not seen anyone for almost two years. x

[Evaflo10s]

I would hope that isn’t the case . I’m sure it doesn’t make it any less painful or distressing to be left to cope alone , however long you’ve had it .

Anytime I’m having a problem I write my consultant a letter . Old fashioned maybe but she always gets it and reply’s with an appointment or advice .

Do hope you get to see someone very soon .

[Shelley1701]

I had a telephone appointment June last year with the nurse. Was supposed to have a telephone appointment with the consultant end of January which got cancelled and not had a new date yet.

[Knip]

Sorry to hear that. That is really tough. At our RA department we see the consultant or the clinical nurse specialist every six to twelve months once our treatment is sorted then one of the nurses in between. If there are any issues the nurse can't deal with she calls the consultant in. My consultant told me that he has 4,000 patients on his list which is why we don't see him often. Hope you get more joy soon.

[Jacqbox]

I last saw a rheumatology doctor in September 19, since I have had telephone consultation every 6 months alternating with doc & rheumy nurse. Last one last week was with rheumy nurse. I have just received my next appointment with doc for November 2012 which is a phone consultation & very firmly states not to go the the hospital. Like others I haven’t had a f2f since September 2019, I have had numerous flares especially since my abatacept infusions were cancelled on 2 occasions by the hospital as the the Covid infection levels were very high there. I am back to problems in my hands & feet that I haven’t had since starting biologics 11years ago. Feel that a lot more could & should have been done to protect those of us that are immunosuppressed to have our infusions in area away from hot spots in the hospital. Outpatient clinic is shared with orthopaedics so many people referred there from A&E so understand rheumatology reluctance to get rheumy patients sharing the waiting area.

[Hidden]

I think that all hospitals seem to be different in what depts are open or closed. At the hospital I attend, the rheumatology clinic has stayed open but they have completely closed up the chest clinic and the ENT and audiology clinic. Both have been a worry to me, I am deaf in one ear and am supposed to have my other one checked and suctioned every four to six months. We got to nine months and my ear was getting painful and blocked and I wasn't hearing well. I rang the clinic only to be told that they were closed and had no idea when they would open again. I was able to get an appointment at a different hospital where they sorted things out in just twenty minutes. I could have waited a year or more for an appointment at our hospital while things get worse all the time.

As to our chest clinic being closed, this is a big worry because it has recently been found that I have shadowing, scarring and other problems on my lungs and need to see a specialist but can't get to see one because they aren't seeing anyone at present. I don't know what is happening with them all but it is not good.

[Allije]

I suspect it depends where you are. England Scotland and Wales are all run very differently from a health perspective and then there are the contributions from those much further afield.I've been lucky, like others to have phone appointments video calls and a face to facec with the OT. I'm in Highlands.

[LJS13]

I’ve had a consultant appointment face to face at the clinic. I think they are still trying to use telephone calls instead of face to face depends on your situation and how urgent it is.

[embroy]

I have had 2 or 3 Appointments face to face. Have another one in July. First appointment in the Lockdown was on the phone. The Rumotology appt are face to face over here in London.

[Gillian1163]

I have had a telephone consultation, a face to Face both with my consultant and a biologic treatment

[Blackwitch]

Hi Everyone. It’s a sorry state of affairs. I had a face to face appointment with a rheumatologist last week & had a steroid jab. I cancelled the previous one due to the state of my back & the long journey but I’m gobsmacked at the difference around the country. My problem is seeing or even speaking to my own GP! Good luck everyone. Surely things will improve- or will they. I think my GP is getting used to not seeing his patients & quite likes it. Take care & stay safe. Nic xx

[Schatz123]

I wish I knew, I have had no contact from them doe at least 14 months when my appointment was cancelled at short notice.