Missed appointments: Has anyone not... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Missed appointments

dordle
dordle

Has anyone not been called in for a check up or other appointment because of Coronavirus?

44 Replies
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Yes. My specialist nurse mentioned in a telephone conversation we were having that I was due an appointment. That was months ago and I have heard nothing. If I had a problem I could always call the hospital helpline but that is not really the point. Prior to Covid I had regular appointments every 3-6 months but since the pandemic began I have heard nothing at all. I can only assume the consultant is still involved as recently my immunosuppressant medication has been changed and blood tests requested every two weeks. I received a letter from my GP informing me of this change, not my consultant.

From feeling confident in my care team I now feel abandoned and find the whole situation surreal. If I want to see my GP it’s never her, just a doctor from the practice in a gazebo on the surgery car park 🥴.

dordle
dordle in reply to kimmo

It's a really tricky situation isn't it. I had my last appointment in August 2019 (ha, nearly put 1919!) and luckily a heart echo last October. As long as regular blood tests are good and we feel alright, I guess we will have to wait a while. Thanks for replying, hope you get an appointment soon. Stay well.

Hi, yes nothing from my rheumatologist just shielding letters months ago, no check ups, bloods etc.

I was only diagnosed April 2019 with some of the connective tissues diseases affecting me and was having further scans and biopsies for more but it all halted in March, not had any communication from the team.

My GP keeps approving my monthly prescription requests no questions and sent flu jab appt, she’s not got a clue when it anything else! 😅

On the other hand my dietician and gastroenterologist have been in regular contact with me every 3 months by phone to check if I’m ok.

It might be due to my Rheumatology team being in Manchester and my gastro team being at Stoke or the rheumatologist expects me to call the helpline if I get really desperate for help, not sure 🤔

It was a very long road to get any kind of help for me and I’m not used to it so I’ve got extremely low expectations, probably a bit too lax about it all but the damage is already done now so the less I waste energy on all that stuff the better. 😁

Poppy221
Poppy221 in reply to Bohoyogi

With my GP I had to actively seek a flu jab appointment - they only automatically do on age range not medication. Once I got through then I got the flu jab. BTW You might want to ask about a pneumonia jab as well.

Bohoyogi
Bohoyogi in reply to Poppy221

Thanks yes I’ve had the pneumonia one too, I’ve got some issues with my WBC so I was started on flu jabs a few years before they worked the other stuff out & started me on the meds.

dordle
dordle in reply to Bohoyogi

We don't get reminders on the flu jabs and have to remember to ask when they are. Keep on your meds and pester them if you don't feel well.

Hello Dordle, I'm recently diagnosed and was due to see the Royal Free team at my local hospital at the start of lockdown. Understandably they are not leaving London. However, my consultant called me a couple of months later, we had a very useful conversation and I was put on new meds. I will be having another phone consultation in a few weeks. I can't say that I feel abandoned, though I don't feel as safe and confident as I did prior to covid. I'm just thankful I saw the RF team and my consultant before lockdown. In addition goodness knows when I will see my cardiologist, my echo cardiogram was 3 months late and I'm waiting for afollow up appointment, I expect this recent spike will put that back.

dordle
dordle in reply to marbelina

They are a brilliant team at the Royal Free. Expect everyone will get appointments eventually. I missed my lung function test, but don't get any breathlessness (touch wood) and am rubbish at the blowing anyway!

Hi, similar to the comment below, I would have been going to Th Royal Free next week to see my consultant and have an echocardiogram. He cardiology appointment was cancelled and my consultant appointment is going to be a video call.

dordle
dordle in reply to OngPatient

Good that you are getting a video call, best to stay out of London and anywhere busy. Hope you don't have too long a wait for your heart echo.

My appointments have been video or telephone consultations. I’ve not had my tests etc and I’m well over due lung function, bone density etc

I feel looked after. My blood tests are at my GP every 4 weeks and I can email my consultants if I need to.

I’m on the maximum immunosuppressants and have lung disease. I’m still shielding and haven’t been out for 8 months nor driven either.

I’m afraid to go to hospital, as I usually go by train.

I’m holding out for a vaccine.

I hope everyone stays safe, if you are newly diagnosed I would press for testing x

Best to stay well away from hospital and public transport. I think the surgeries are doing their best and we can keep our blood tests going, which is an important monitor. Yes my lung function test delayed too, although I had the heart echo last October. Have had this about 11 years now and am stable at least. Stay safe. x

Nope, not heard a dickey bird. Feeling totally forgotten about.

dordle
dordle in reply to MissusTee

I'm sure you won't have been forgotten, this is a dreadful situation for everyone isn't it? You don't know how long to wait, before making enquiries about appointments. Check ups for most things seem to have stopped.

yep no specialist appointments for 9 months, no blood monitoring either

dordle
dordle in reply to sleepytink

Oh dear, can't your GP do regular blood tests? I still get mine every 3 months. It's comforting to hear that other people aren't getting specialist appointments either. Keep safe.

volvox45
volvox45 in reply to dordle

What do you get blood tests for? I never get blood tests. It seems treatment for every individual with SSc is different.

dordle
dordle in reply to volvox45

Sorry not to have replied before. I take Mycophenylate and a blood thinner, so have 3 monthly blood tests to check full blood count, inflammation markers and liver function.

volvox45
volvox45 in reply to dordle

I know I am very ignorant but could you tell me what qualifies you to be prescribed Mycophenylate, I mean do you have very severe symptoms that improve with that medication? The only medication I have ever been offered is antibiotics for SIBO (which didn't work!). I have been diagnosed for two years and still feeling very lost. I am very worried that I am missing out on treatment that might help (bronchiectasis, oesophagus, guts).

Poppy221
Poppy221 in reply to volvox45

In my case it was the CT scan of my chest showing scarring in my lungs of a type that is seen as caused by scleroderma and they wanted to stop it progressing.

volvox45
volvox45 in reply to Poppy221

I have bronchiectasis caused by scleroderma, is that the same?

Poppy221
Poppy221 in reply to volvox45

I had to look up bronchiectasis. No. The scarring is in my lungs, not in the tubes and so far as I know, my tubes are not widened. I was shown a picture of my lungs and all these pale thin straight lines were pointed out to me - that is the scarring.

volvox45
volvox45 in reply to Poppy221

Gosh, that's really interesting (thanks for bothering to look it up!). So it seems scleroderma can have completely different effects on the lungs. What an extraordinary condition it is. I had a completely surreal experience where the consultant was looking at the CT scan done to check out a little lesion on my pancreas and he was being sympathetic about my poor lungs and I was wondering what on earth he was talking about – I had no symptoms at that point. He was really embarrassed at breaking bad news in such a way!

Poppy221
Poppy221 in reply to volvox45

Oh dear.

dordle
dordle in reply to volvox45

I was diagnosed with Scleroderma & Raynauds about 11 years ago. I am very lucky to have it mildly in comparison with others on here and it is stable. The Mycophenylate is an immune-suppressant. I started off on two x 500 mg tablets a day; about 4 years ago Professor Denton cut the dose to one a day, then I tried 6 months without any tablets. I found the itchy skin and digestive problems returned, so went back on one a day. I take Omeprazole (2 x 20 mg) every day to help with acid problems. Hope some of this is helpful.

volvox45
volvox45 in reply to dordle

Thank you Dordle, that is very helpful and I will make a note of the Mycophenylate so I can ask about it if I ever get to see a consultant again! Clearly seeing Professor Denton is the way forward so I shall ask my GP very firmly to refer me. I don't have acid problems although the gastro man is always trying to get me to admit that I do, in order to explain the bronchiectasis…

dordle
dordle in reply to volvox45

Do let me know at some time, if you have success! Take care.

volvox45
volvox45 in reply to dordle

Thank you, I will!

I haven't had any appointments either. Usually I have two rheumatology per year, a cardiac, eye hospital, lung function, echocardiogram etc. The only one I've had was by phone.

So it's not just you. If you are worried though please contact the relevant department....It's still possible if you tell them something is worrying you.

Take care.

dordle
dordle in reply to Denton1

Thanks, it's nice to know we are all in the same boat (hopefully not the Titanic!). Take care.

volvox45
volvox45 in reply to Denton1

That is reassuring in the sense that I shouldn't take these cancellations etc personally! I don't understand how the Covid situation could prevent a phone call from a rheumatologist happening, but there you go…

Denton1
Denton1 in reply to volvox45

I aactually had a video consultancy today, which was very good and I don't feel that it could have gone better if I had been there in person. I was not rushed at all and was talked through the whole process of setting up the call, which was done in an unhurried manner.

Hope you have the same help.

volvox45
volvox45 in reply to Denton1

That sounds brilliant, I'm very glad you had such a good experience. I just don't know whether to chase the rheumatology dept in the hope it was just an admin glitch, or accept that they don't have time because of Covid and give up till next year.

Denton1
Denton1 in reply to volvox45

I have waited over a year for the video call. It must be hard on the hospital staff too.

I also have toothache but am scared of going to the dentist. This horrid pandemic will be over one day, and we just have to keep positive. Every day I count my blessings. I can eat, family have been safe, I have a roof over my head, i get food delivered so dont have to go out for it, etc. That's the only way we can stay sane.

To help he keep positive I sent off for lots of garden bulbs to look forward to lots of beautiful flowers in the spring, when hopefully we will be past the worse.

I wish you all the very best.

KEEP SAFE. X

As I posted before haven’t seen a rheumatologist for two years. First no consultant then an appointment cancelled because of the COVID situation. Now have a phone chat scheduled.

dordle
dordle in reply to KathleenMary

Goodness, that's a long time. Hope your phone chat is successful. Let us know.

My August appointment (for erythromelalgia at the scleroderma clinic) has been put back until late March next year. Prior to that I had my first and only appointment a year ago. I did call the helpline and was told they would try and see me earlier if I had a big problem. I don't feel I can demand that under present circumstances, so I will keep managing as best i can on my own (as usual for some years!) good luck to you!

dordle
dordle in reply to redmaggie

Can't see the present circumstances improving too quickly. Hope your appointment doesn't get changed again.

Yes! I'm fully expecting it to get delayed again, the Royal Free is a key hospital for covid. Let's hope we all avoid the virus.

I had my royal free appointment over the phone and my local hospital over the phone both on April. I wasn’t expecting my royal free one to go ahead and couldn’t get through to the hospital to find out, as I hadn’t heard it wasn’t I took my own judgement and just didn’t go and then got a surprise phone call appointment. I wasn’t really ready for it so a nice impromptue chat really. My local hospital phone call went like this- hi you ok? Where are you working now? (I work in a hospital hence the interest) I don’t think iloprost will be going ahead but I’ll send a form for when the unit reopens. The end. Btw it did go ahead I called the unit and found out myself it wasn’t shut, so chased my own referrals.

My local hospital I was due in sept and the appointment got changed to phone but didn’t happen then changed to real life in Oct, then changed to phone in Oct but that isn’t happening and got changed to real life in December and just been changed to phone in January I think, I actually have no idea!

It’s a good job I don’t need my local rheum doc for anything other than prescribing the iloprost.

I imagine the back logs are extreme so I don’t Mind not being seen as I’m ok, I just need to try and work out when my appointment is so I don’t miss it and get dropped from the rheum service. That’s happened before I didn’t know I had the appointment so didn’t go and then got referee back to my gp so had to go to the gp to get refered back to the rheum clinic which caused huge delays in my iloprost - fair enough if I had just not gone to an appointment it would of been my fault but I had no idea I even had the appointment I didn’t get s letter or anything.

dordle
dordle in reply to Rp321

I think it will be a long wait for most of us in these extreme circumstances. Yes, a few years ago, I got stuck in a cancellation loop (hospital cancelled) and couldn't see Dr for 18 months. We've just got to be vigilant and look after ourselves.

volvox45
volvox45 in reply to Rp321

What is the iloprost for? Excuse my ignorance but I don't get any medication at all, and I am feeling completely abandoned and unsupported – my last phone consultation with the rheumy consultant didn't happen, I sat by the phone for two hours, but nothing. No explanation, no apology. My symptoms are getting worse and I'm scared.

Rp321
Rp321 in reply to volvox45

Iloprost is for the raynauds, it’s a bit of a last resort type step after lots of different oral medicines have been tried or if your hands/ feet have ulcers that won’t heel or really damaged in some way - that usually only happens to people who have secondary raynauds (the damage part or ulcers)

Okay, thank you, my Raynaud's is just very painful red-white-inky, no ulcers or anything (yet!).

By the way, I just emailed Prof Denton's private secretary and even his private practice is booked till mid-February now, and she said it would be quicker to go via NHS, especially as you have to get a referral from your GP or consultant either way – I cheerfully imagined I could self-refer if it was private! Nope.

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