I rang my Rheumys helpline the other day to ask for my pre infusion blood work.
I was informed by a recording that the helpline is no longer in service and that I should get in touch with my consultants secretary for any advice. The secretary was nice and helpful .
I was wondering if we should have been notified? Given an explanation perhaps? In writing maybe.
Access is key for people like us and even though the helpline had its flaws and on occasion the nurses overplayed their part, they usually got the job done.
I was wondering if anyone has had a similar experience.
Thanks.
Written by
ks1966
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Did you ask the secretary if it’s just your hospital? It maybe a temporary thing because of all the upheaval at the moment,..but I don’t think I remember ever having been informed individually of a change like that.
I asked the secretary. She told me that from now on their job is to dispense medication. Everything has to go back to the consultant. Im honestly confused. You’d think that a qualified nurse has a much bigger role to play.
In fact unless they called you…..the person you spoke to - might not be have been a nurse.
I recently spent a lot of time explaing in detail something that needed sorting …& when I got to the end of my explanation the person I was speaking to said I had to speak to a nurse …so I said OK please put me through and she said “Oh no they have to call you” that was over a month ago and I haven’t heard a word.
My rheumy phoneline use to be open from 9am to 12pm then it was these hours but only could get the answerphone then it went to a voice recording saying they aren't available!
Think they are so snowed under they can't cope. I do still have an email address to contact so there is that !
Its horrible for everyone isn't it, they can't provide the care they want and we can't get the help we need
It seems to happen quite often that the rheumatology helpline has to close when there is a shortage of qualified specilist rheumatology nurses. It may be a temporary thing, but it might be worth writing to the complaints email (on the health board website) or the PALS if in England. If we don't comment on things going wrong, the 'higher-ups' think that they can get away with reductions in service....
i emailed my allotted RA nurse to send me my pre Ritux form with no reply or form. Luckily I found one i hadnt used. Just assuming she has gone! Its all ansaphones and no one to speak to 😭.
I contacted the nurse helpline today, to go straight to a message that it could be around 7 days before they get back to me, with advice to try my GP or NHS 111, before leaving a message if I 'strictly' didn't need rheumatology advice.
I only got given the helpline number when I went on biologics but it seems to have now been merged with the biologics co-ordinator line.
I called it in October when I had Covid and needed some advice about medication. I left a message and nobody ever returned my call.
Whenever I've called the biologics co-ordinator in the past, chasing a prescription usually, my message was never returned either.
So I guess our helpline has gone too.
If I ever call the consultant's secretary I get spoken to like I'm a total nuisance (I call for a prescription as instructed, "Yeah you and everyone else today"; or I request scan results, "What do you want them for?"). Sigh.
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