Cancelled appointment - gutted.: After waiting months... - NRAS

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Cancelled appointment - gutted.

mjrminor profile image

After waiting months for my 'urgent' rheumatology appointment, I got a phone call four hours before I was due to be seen saying the rheumatologist needs to self isolate. They can't give me another date and can't tell me how soon or long it might be until I can be seen, but they'll write to me with a new date when they do.

I'm beyond gutted. I understand it can't be helped - I'm sure health professionals come into contact with covid all the time, but I've been waiting for ages for this appointment and had really worked myself up about it because as a seronegative sufferer with normal inflammation levels even in mid flare it seems like I'm always having to fight to be heard.

Private consultation it is then. Just have to find the money first. Ugh.

31 Replies

I can understand how upset you feel, it really is so disappointing. Is that the only rheumatologist at your hospital - would it help to ring and ask if another consultant could see you?

mjrminor profile image
mjrminor in reply to springcross

Thank you Springcross. I asked while I was on the phone but the only other rheumatologist is fully booked up. My previous rheumatologist (who was not great) left in the spring and I don't think was replaced.

medway-lady profile image
medway-lady in reply to mjrminor

They would still have a Registrar, not a full consultant but still an expert. I'm in Medway and prefer the Registrar as so nice. And it's the same here a consultancy vacancy so perhaps ring back and ask to speak to a Registar or even for a cancellation if one crops up.

mjrminor profile image
mjrminor in reply to medway-lady

That's a good idea. Thank you.

Mmrr profile image
Mmrr in reply to mjrminor

The registrar was the one who after many years MRId my neck problems and got me a neurosurgical referral.

National shortage of Rheumatologist and nurse specialists

springcross profile image
springcross in reply to mjrminor

That's a shame but I agree with medway-lady as my first rheumatologist was a Registrar too but he left and I now see a consultant and although he is really nice, I actually thought the Registrar was better. I really hope you can get something sorted, it's so wrong having to wait so long. x

My Registar was the chap who found my kidney failure, got me the bed in the hospital and visited me every day. He looked so upset that I'll never forget what a caring doctor looks like. We forget that they really are the ones who often are most interested yet get overlooked. A doctor with a smile and emotion in my book is better than one who is brilliant but doesn't care about the person.

I agree and that's how it should be, unfortunately all too often these days that is quite rare. I have to say I got it wrong about my first rheumatologist, I've just found out that he was actually a Clinical Fellow until he left but was extremely popular and is still missed very much.

I agree with springcross. There must be another rheumatologist in the team that you could see. If not ask for a cancellation appointment perhaps. Make it absolutely clear how much you're suffering because you're flaring/drugs are not working properly.If all else fails you could ask if you could have a private consultation with the Lead Consultant in your Rheumatology Department.

mjrminor profile image
mjrminor in reply to Lolabridge

Thanks. I'll call tomorrow.

How awful and frustrating for you hopefully it won’t be so long and you will be seen.

mjrminor profile image
mjrminor in reply to Vonnie10

Thank you.

I'm so sorry. Sending healing thoughts and hugs

mjrminor profile image
mjrminor in reply to Gnarli

Thank you, Gnarli.

So sorry you are disappointed, it's so frustrating. As mum to a young doctor I know first hand how frustrated they are that they can't offer the kind of care they want to. It may be worth asking for a cancellation appointment if you can get there at short notice. I hope you get the help you need soon.

I am seronegative and I fully understand how you feel. Only very rarely do my inflammation markers rise even during an awful flare up. When I have a scan the inflammation is everywhere. I had a really bad flare of diverticulitis no joy from GP. Paid privately to see a gastroenterologist and it was the best money I have ever spent. If you can find the money just go for it. Shouldn’t have to but sometimes it’s the only way to go. I hope you get sorted soon.

I'm so sorry to hear this. I don't know what's happening to our rheumatology departments at the moment. My last appointment was in March. Didn't even see a consultant just a nurse who had to keep leaving the room to ask the consultant questions on my behalf. She said I would have a review in 3 months but appointment came through for January 2022! I'm having a very bad flare at the moment and after having a conversation with the advice line nurse yesterday, have now had a letter canceling January appt now have to wait until the end of April! I really dont inderstand why, it cant be covid related because its so far in advance. If I had the money I would definitely look into having a private appointment. Life is too precious to have to spend one more minute in pain than we have to. I'm just very thankful that my GP has stepped up and gave me a steroid injection without waiting for rheumy to get back to him. They always take at least a week if not longer and he wasn't prepared for me to have to suffer that long. Is there any way your GP could help you while you wait?

I am gutted for you. Let’s hope you hear soon. Even if you do go privately take the free appointment too. Buona fortuna Bx

mjrminor profile image
mjrminor in reply to Batteria

Thank you.

I unfortunately suffered something similar. I have not seen anyone for a couple of years understandable due to the pandemic. But all of a sudden my biologic was stopped and appointment after after appointment was cancelled with short notice. It was an emotional roller coaster.

My husband wrote to the hospital CEO and I got an appointment with in the week. New biologic which I am having today.

I have also been given the consultants email as a point of contact and nurses email. I don’t plan on needing to use them now but it’s good to have

Good luck

I'm so sorry to hear this. Really frustrating, having waited so long already. It wouldn't be so bad if they offered a further appointment at the time of the cancellation. Hope you get a further appointment very soon and that it will kept as promised.

There must be rhuematology nurses there, I have at least four rhuematology nurses in my team. Keep ringing the more you ring the more your name is put to the top because you will not, "go quietly" keep fighting you are worth it.

I'm so sorry to hear your appointment was cancelled at the last minute, but the rheumatology department do have a responsibility of care towards you, so I'd be following this up. I'm also seronegative so understand your frustration at not being listened too. I keep a daily journal of the condition of my joints and health, take a summary sheet to each appointment for scanning into my notes. I've found my care has improved since doing this. Best wishes to you.

Cavlover profile image
Cavlover in reply to Mmrr

Good idea about keeping notes as I often feel they don't recognise my problems as I am seroneg and low CRP etc with little swelling but struggle with sore joints.

Mmrr profile image
Mmrr in reply to Cavlover

Yes, similar here.

NannyNooNoo profile image
NannyNooNoo in reply to Cavlover

Sounds just like me! Seroneg, also OA and fibro. The letter I’ve just received after my appointment last month is incorrect in so many areas - the registrar had booked me in for the wrong injection; letter mentions plantar fasciitis in my foot - but she didn’t even look at, let alone examine my feet! I phoned the secretary about my feet, asking for further investigations - suddenly my injection is cancelled and replaced with a HOTF2F rheumy appointment! I’m hoping it’s not same registrar, as I don’t have much confidence in her!

So sorry to hear your news

Hi, I had to take the same route to a private consultant. It cost around 180 however I was seen in days and he is now my NHS consultant as he wanted to help me as much as he could. So don’t worry it just opens doors.

Hi, When I first started my journey with RA, I was informed it it would probably be approx eight months to see a consultant. I was in so much pain day and night . So I had no choice but to get a private consultation. Got one for TWO days later , with same consultant !! But it was worth every penny xxxx

So disappointing for you. Sounds like suggestions below to try & see a Registrar are good. Good Luck X

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