Rheumy helpline not replied to me 😢

[Natbat87]

Hi all, I've had RA since 2018 and I've had a cocktail of drugs since then, but I've now been on sarilumab for around 2 years and was doing okish up until a few months ago.

I've rang Rheumy helpline last Wednesday and we have to leave a message but still had no reply. My appointment should have been this month but been put back to end of September. I suppose I'm just here to moan. At my last appointment I had a steroid injection which helped a lot but now that has obviously worn off and I'm back to pain in most joints and just can't do anything without being in too much pain. They mentioned about adding in hydrocloquorine or leflunomide and said to ring up but still haven't heard anything. Think I'll just have to ring again.

On top of all this, I've got several cysts on my scalp and one keeps getting infected. The bloody things need removing properly but GP says it's going to be around a year before I see a dermatologist. I'm also starting a job soon which is part time and working from.home but if I'm feeling like this then probably won't make the first week!

Sorry for the rant 😅 Thank you for listening xx Take care all of you

[bpeal1]

If I were you I would contact the rheumatologist’s secretary. Politely explain that the helpline hasn’t come back to you and you really need to be seen. Their number or email address might be on your copies of letters, if not call the hospital’s main switchboard and ask for the contact information for Dr xyz’s secretary. Good luck- I hope you get some help.

[rmros]

I'm so sorry and it's no consolation but this is not unusual. The system is broken.

[AgedCrone]

Give it a bit more time…you rang on Wednesday…the rheumy team probably don’t work Sat/Sun…..so Inc today that is only three days isn’t it?

I am lucky if my rheumy nurses reply in two weeks …I know when you are in pain waiting seems interminable….but try to hang on & give it until this Wednesday.

[Mmrr]

I'm sorry to hear that you are not doing so well.The rheumatology helpline usually takes 5 - 7 working days to get back to me, a very long wait when you don't feel so good.

[Paula-C]

I really feel for people getting this sort of service from their Rheumy team. I emailed a question today about my drugs to my team at Kingsmill Hospital at 8.25, my reply was 4 minutes later at 8.29. In the past if I email in the morning I have a reply back very quickly.

[bpeal1 in reply to Paula-C]

I agree. I have a great team too. I called and left a message on the answer phone at 1.15pm yesterday. Had a call back from the nurse at 2pm and she had already spoken to my consultant and come up with a plan.

[AgedCrone in reply to bpeal1]

When I first attended my present hospital there were 6 Rheumy nurses.There are now 3, but one always seems to be on leave….so only 2 at any one time.

We used to be able to email…but that was stopped.

I don’t bother calling these days.

[rmros in reply to Paula-C]

I called when I had Covid in January as I was told to get some advice by the people who gave me Paxlovid. I'm still waiting for the call back.

[Luludean]

So Natbat, you are not alone in having this problem!! I left a message on helpline over 3 weeks ago heard nothing .Asked to change consultants, nothing, my GP asked for urgent appointment gor me in rheumstology. Nothing .

Other departments working fine .

[Natbat87]

Hi all, thanks for your messages. I received a phonecall today and they have made me an appointment for Friday. They are very good once you get to speak to the nurses so I'm really pleased they've got me in so quick. She did apologise for the wait but at least I'm booked in now xx