rheumatology department

[Luludean]

I hsve seen mo one face to face for 2/3 years. I asked to change consultant , nothing has happened. 7 months ago I asked for sn appointment, nothing!

On Aug 3rd I left message asking for help and an appointment, no reply.

I am in despair,

[Boxerlady]

That's awful - time to contact PALS, I think. I've got an appointment today (annual review) which should have been in February but that amount of delay in the current climate is understandable. Even during the pandemic, I was called in for a F2F with a rheumy nurse who had been briefed by the consultant and who was able to change my medication and give me a steroid injection.

[Luludean in reply to Boxerlady]

Thank you Boxerlady.

It does make me miserable.

I am under cardiology also , heart disease, that department works. But there is NO interaction between the two departments. Iadked for a multidisciplinary consultation , the rheumy consultant point blank refused.

[KittyJ]

have you spoken to your GP, mine got me an appointment when she found out I hadn’t been seen for two years. Failing that I’d contact PALS

[Luludean in reply to KittyJ]

Yes Kitty , gp asked for urgent referral. Nothing !!

[KittyJ in reply to Luludean]

I’d chase it, unless you tell them you’ve heard nothing they’ll assume all is ok.

[Mmrr]

As others have said it is time to contact your consultants secretary in writing, or your GP to contact rheumatology on your behalf.

Good luck.

[Luludean in reply to Mmrr]

Thank you!

[gailboddy]

Me neither!

[Flinda in reply to gailboddy]

And me! I've given up trying. It's very clear to me that the NHS is broken.

[BoneyC]

I haven't been 'seen' in clinic for 4 years and recently wrote to PALS (copying in the local NHS Integrated Care Board) to complain. A couple of hours later an appointment was made for next month.

Not sure if this is still up to date (perhaps someone else can comment?), but NICE Guidelines on the link below say RA patients should have a' comprehensive annual review'

'Adults with rheumatoid arthritis have a check-up each year. The check-up includes an assessment of rheumatoid arthritis and complications, as well as a check for heart disease, bone disease and depression. They are asked about how the rheumatoid arthritis is affecting their day-to-day life and are referred to other services (such as physiotherapy and occupational therapy) if needed.'

nice.org.uk/guidance/qs33/c...

Have to say, I haven't had any checks for heart disease (what would this entail ECG?) ever by Rheumatology Department (52 year history), only when going in for elected THR's. Bone disease (Dexa scan) was years ago and not done regularly either.

[Luludean]

thank you Boney !! A lot of good advice to follow. Will phone pals today!! L

[cyberbarn]

When you talk to PALS if you want to make a formal complaint, then you need to specifically say so. If you just want an appointment then that's fine too. Some people think they have made a complaint when they talk to PALS, but sometimes PALS will only escalate it to a formal complaint if the patient specifically asks for it. Otherwise, they will just sort an appointment out but the board of the trust will have no idea that there is a systemic problem rheumatology.

[Luludean in reply to cyberbarn]

Gosh so many well informed pro active Arthritics!!!

Thank you Cybernarn ! I think I am afraid of being blacklisted . I am normally resilient but , when a consultant is rude and the “ urgent response” nurses down right passive aggressive I turn into a weakling. I will contact Pals today !

[thelmar in reply to cyberbarn]

Agree that ‘formal complaint’ are the important words to use.

[RAcatlady]

I haven't been seen since December 2020. Where I am they stopped reviews and decided you had to "ask" to be seen due to lack of staff. I don't even know if my original consultant is still there. I'm going to have to email and ask to be seen, because I'm getting concerned about the long term Naproxen/Omeprazole use (6 years) and at my blood test 2 times ago I asked to get my inflamation level checked. Next blood test the nurse pulled up the results and it turns out there have been red flags on my results for quite some time (including low haemoglobin) and the GP has just been putting in "Does not affect patient, no action required!"

[Luludean in reply to RAcatlady]

Hi catlady. That is disgusting !!!!!

So worrying , disconcerting and depressing!!!!!

I wrote a similar post this morning but it has disappeared.

After hours of waiting I got through to booking person in the “pain clinic ». My consultant there ( I do trust and like him) had put FUIP ( urgent follow up soon) on my notes. She ( booking person ) gave me 13 September appointment !!!!!!!! I rejoiced!!!

My chart now says it is a telephone appointment . Impossible !!!

Nurses Urgent help line in Rheumatology promise to call back in 5 days . Nothing !! It has been 9 days . No call.

Monday it is definitely contact PALS time.

Keep cheerful everyone !!

[RAcatlady in reply to Luludean]

I'm in Scotland and we don't have PAL's, but I emailed rheumatology and I've managed to get an appointment late September. I making a list of all the things I need to ask about in case I don't see them again!

[Runrig01]

My rheumatologist is as useful as a chocolate teapot, but in fairness I have been reviewed by either him or his nurses throughout the pandemic. I phoned yesterday on gps instructions as a recent knee X-ray, for severe pain, shows an effusion and she wanted to know how to proceed. I spoke to the nurse yesterday and have been given an appointment for Wednesday for a steroid injection.

PALs are there to improve communication between professionals and patients. Their aim is to prevent things progressing to a formal complaint. So they will be keen to resolve it for you. If they don’t then you can progress to a formal complaint, but I worked as a nurse for over 30yrs, and have had many dealings with PALs and they are good st reaching solutions. Good luck 🤞

[RAcatlady in reply to Runrig01]

I've never heard of PALs. What is it?

[Runrig01 in reply to RAcatlady]

It stands for Patient Advice and Liason service, they have an office at most hospitals, but any hospital switchboard can put you through to them.

[RAcatlady in reply to Runrig01]

I've just looked. Not available in Scotland

[Mr_Hinn]

I've had only 1 telephone appointment in 3 years...All the woman did was rattle off a pre-prepared script...told her to f-off... how rude you may say...had it a long time...The treatment is a joke...

[Luludean in reply to Mr_Hinn]

Mr Hinn , do you actually have a diagnosis?where are you based?

[Mr_Hinn in reply to Luludean]

I got rheumatoid arthritis/still's disease when I was a kid of 5...now 53...I'm in a place called Whitley Bay.