I see it all the time on here. When people ask for advice they are always told to contact their nurse for advice. Is this really that easy for all of you and if so , are you based in the UK?
My biologics nurse has always been elusive. Always answer machine and if you’re lucky you might get a call back 2-3 days later. If you miss the call you have to start all over again. This service has now been further downgraded - urgent queries dial 111 or go to A&E. Non urgent take at least 2 weeks. (I have been waiting for a response for over a month)
Last year when I had covid and posted on here to ask for advice about when to resume my biologic most replies advised me strongly to contact my nurse. Hahaha! When I saw her in clinic 6 weeks later she couldn’t have been less interested and wasn’t even aware anti virals were possible.
So - if you live in the UK is my experience typical or as dire as I fear.
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JulieAndrea
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Your experience is not untypical by the sounds of it but I have to stick up for my wonderful rheumatology team (in UK) whom I have known for 30+ years and have never let me down. The nurses have always been reliable and will respond within a couple of days at the latest if not within hours and if (and I have on quite a few occasions) I need to be seen urgently I’m given an appointment within a short time to see one of them or one of the doctors depending on what crisis I’ve cooked up.
Lucky? Possibly. Should it be like that? Oh yes, always, but unfortunately I hear of the most awful lack of care and compassion from others on this site and am just thankful I landed where I did.
Rheumatology teams, like so many specialisms, have been run ragged, staff have left or are on long term sick, the demand is through the roof and there just aren’t enough people to treat the people who need them. Bad state of affairs but no reason whatsoever for lack of interest and compassion for people who really need help and advice.
Mine are cold hearted look and act like they dont want to even be in the job one in particular says the most random stuff I hate going clinic most depressing place put years on me. Feel sorry for the patient. Thank god they don't work on wards
Same here - no one has ever mentioned *rheumatology nurses* to me if I want to make contact with the department then I email the consultant’s (never seen him either) secretary and they phone back. I think they like to speak to you on the phone as it means there is nothing in writing!
I think it’s as bad as you describe almost everywhere these days…but there are excellent rheumy nurses out there,& I do think it’s worth persevering rather than continuing with a drug that isn’t suiting you.
Maybe I’m lucky but I have great access to my rheumatology team. The nurse helpline is an answer phone with a recorded message saying they will get back to you within 48 hours, however they have always phoned me back the same day and usually within an hour or 2. We also have an email address for the rheumatology secretaries, and again I’ve always had very quick responses.
I hear you I was under the smaller hospital of a two hospital trust and the nurse was a nightmare when I was starting biologics. At one point she told me to stop talking as she had other patients to deal with. - it was my first biologic and I was only asking about the process. About a year later the biologic was stopped without notice and it was impossible to get hold of her. I would call and email etc. Turns out she had not done the form for the prescription. I ended up having to change biologics as I had such a massive gap due to no prescription.
The only way I was able to get hold of anyone at all was my husband wrote to the chief executive of the trust. As I was without a biologic prescription. Once this happened the consultant got in touch with me and they moved my care to the bigger of the two hospitals which actually seem to have 2 nurses who email me back. I am able to email and ask about when my next blood test is. And I have seen a consultant and nurse every three months. A little over kill but not mocking it. I now have a relationship with my consultant which for years I had heard rumours of people with RA doing so. You can get there. Have a look at your hospital and how it is set up. I think my first one was more of an outreach service with locum consultants.
I feel totally abandoned by any rheumatology team that might exist at my hospital .... last seen in clinic September 2019 and last spoke to a nurse July 2022. Chased for an appointment 3 times, they say I am 'urgent' but still no appointment.
I’m In Scotland. Needed to phone the infusion unit last week about a query. Rang first thing and one of the nurses replied at midday. They’re all very supportive and engaging. And a lot of continuity of staff over the 15 years I’ve been going there.
A very big variation in experiences here! I (south west Herts) have a helpline number and this is an answerphone service which states they will aim to get back to you within 48 hours- which does seem to happen. I can also ask for blood test forms to be sent to me on there. I think there’s also an email address but haven’t used that for years.
I can also email or phone the biologics delivery company for queries about that,
I have found the services mostly good - they got me a prescription for steroids very quickly when I rang and said I was flaring badly - and then rang the next day to confirm that my crp was very high ! (155)
My Rheum department have brilliant nurses and always respond to queries. I know they are very busy, and have had their funding cut, so am very grateful for all their support. Having read some of your replies, I am very grateful to our rheum nurses.
I'm one of the lucky ones - helpful and sympathetic nurses who ring back the same day (unless I leave a message late afternoon in which case it's the following day.)
So sorry to hear of your experience. I saw mine yesterday for a steroid injection. There is a Mon-,Fri helpline where you leave a message and they call back. If they need to refer to consultant they will do so and call you after that too. They make an tremendous difference to me and I said to my husband yesterday that I don't know how I would manage without them.
I have to say the rheumatology helpline at our clinic is now very hit and miss. It operates for 2 hours Mon to Fri but of late has either been unavailable or the wait is so long that I've been cut off before getting to the top of the queue. I recently had an appointment telephone call after trying to contact them for 3 months and put all this to the person on the call and was told they are severely shortstaffed - contact GP if necessary which I have and unfortunately they are not interested. Sorry for the waffle but it can be frustrating - Cornwall
My RA dept have just come up with a great system. If you feel that, with your medication, you are holding your own with regard to your RA you can have a yearly appointment, face to face, but, in the meantime you can ring up and be seen within five days if you have a bad flare up. For me that is perfect. There have been times when I have been in a bad way and had to wait for my next appt, perhaps two months away, and also times when I felt I really didn't need to be seen, but of course went along anyway. Bloods will still be monitored and if they spot anything untoward they will contact you. I think this makes so much sense.
Gloucestershire here. Individual nurses might be nice, knowledgable and kind, but the system is a problem. Our advice line is only open a couple of hours a day, no messages can be left. It is really hard to get through as it either rings for ages and then is cut off, or the 'the advice line is closed' message happens straight away, even within the hours it is supposed to be open. They have an email address but the replies are often terse and short rather than the conversation that is needed.
I found out recently that the GPs use the same advice line that patients use and are having the same problem. They aren't happy either because it makes it really difficult to do shared care. Especially if patients are going to their GPs for advice because they can't get through to the advice line.
very similar experience. I have a Rheumatology nurse helpline number which I have used quite a few times . You have to leave your info on an answer machine and usually it takes around 3 weeks for a reply and have had to repeat the call a couple of times as well. I haven’t seen my consultant for a few years and the same with the nurses. I have regular blood tests in order to renew my Benepali prescription and that’s it. So you’re definitely not on your own. Good luck
I've tried to call the biologics answerphone service about 3 times in the last 5 years - including for advice about medication while taking antivirals for Covid. Not once has anyone ever returned my call. I simply won't bother again.
I recently had to phone the nurse helpline, and was answered by a different department, saying the rheumatology nurses no longer used this number. Phoned the secretary for the new number to find there isn’t a helpline now. You have to discuss it with the secretary and she’ll either solve it or refer on to the nurses. Thankfully, she decided I needed an urgent appointment. I was n my want to havd a F2F with my rheumatologist in March, to discuss tweaking my meds, which never materialised. Unfortunately there was no appointments till Sept with my consultant. She did arrange for me to see the sane nurse, that insisted I needed to see my consultant. This appointment was for 1 week later, so couldn’t complain, except she is still unable to change meds, or offer a course of steroids for the inflammation, or a steroid injection. She was able to request an X-ray of my feet and suggest a referral to the foot surgeons. However I have to wait to see if they will send a prescription for a short course of steroids to get on top of the inflammation, in order to enjoy my holiday on Friday. She reassured me my next appointment will be with my consultant, which suggests a long wait to follow up. My area has a private company undertaking appointments for stable rheumatology patients who’re not on biologics, to help with waiting times. Some of the rheumatology nurses actually left the nhs to work with this company. I understand the need for something to change. Unlike surgeons, who sign you off their books once surgery is done, a rheumatologist generally has you on their books for life. Their lists keep getting longer, as more people are joining the lists, than falling off the lists due to death or moving away.
Hi. I am afraid it is the luck of the draw. I have nothing but praise for my rheumy team. They have been fantastic for 21 years but I am afraid there are many people on here who have the same problems with making contact. I must say that I haven't had need to contact them for a while, thank God, so things may be different now with fewer staff etc. I hope your situation changes.
It seems to vary such a lot from area to area. Mine isn’t great & as others have said I don’t even know if I have a Rheumy nurse or not. I guess not as havnt seen one since before covid when swapping Biologics. We have an advice line with an answer machine. It says they hope to respond within 7-10 days. Someone usually gets back to you in about 7 days generally. As for getting you in for an appointment then that’s very unlikely to happen unfortunately. I havnt had a nurse appointment in about 10 years it’s always a consultant. It used to be a great service seeing the same nurses who knew you but not any more unfortunately which is such a shame. X
my rheumatology department have a helpline and when I phone a RA nurse always rings back same day. I must praise the RA department at Riyal Berkshire Hospital in Reading for the good care I’ve had these last 28yrs . Some of my appointments are with the nurses but any problems they consult the consultant and get back to me .
If I phone the helpline and leave a message or send an email I get a reply quickly, sometimes within a couple of hours if it had been an urgent request for help.
I think many Rheumy teams are overwhelmed at the moment with a combination of staff sickness/shortages and more new patients who have developed autoimmune diseases post Covid infections.
I’m sorry you are having a problem getting the help you need.
I have the Western General in Edinburgh, yes they can take about a week to answer calls left on the RA helpline, but when they do come back they are brilliant, they are very clear the helpline is not for emergencies. Recently I had a really bad flare, I was still getting phone calls from the rheumy nurse at 6.30 in the evening after he had spoken with my consultant and agreed a plan, had a phone call next day from GP re new prescription. I think it seems a bit like a postcode lottery!
I have a brilliant Rhum team, if I ring up I will either get a call back that day or the day after. There are 4 rumey nurses who are excellent. I see my consultant twice a year but if I need to see more I can normally get an appointment. I live in North Lincolnshire. I think I am lucky to have them.
I now use email, the response seems to be much quicker then, but as you say you can wait days for a response from a phone call in my case so times weeks or not answered.
I live in north Gloucestershire and come under Cheltenham Hospital. I’ve always had a good response from the specialist nurses after leaving a message on the advice line. Usually same day or within 24 hours.
I'm in Edinburgh, we leave a message on an answerphone and usually receive a reply within a week. If you miss the return call, you have to phone again. Most of the nurses are ok, but I've had very poor experiences with two of them.
One told me by phone on the return call on the Friday she needed to contact my rheumatologist, when I hadn't heard back a week later I called the helpline again, waited for the return call to be told she went on a two week holiday after speaking with me on the said Friday and no one could access her email.
so sorry to hear of your experience. I personally do not even have a rheumatoid nurse, and I have never spoken to one. I had to ring the rheumatology clinic recently, but they have not got back to me and I suspect they won’t. My original appointment was also cancelled.. I have had rheumatoid arthritis for over 35 years and with the same clinic . Since the pandemic, the clinic has changed sadly.
mine has an email service and phone line it used to be 24hrs I would get a reply it’s closer to 48hrs now but I deem myself lucky as I am sure many don’t get the same service either!
I live in Scotland and my experiences of “Rheumy” nurses is the same. I’ve only ever contacted them twice and first time it took them 7 days to respond, second time they didn’t respond at all!! 😡
I am with Southampton university hospital and until the pandemic treatment was excellent. My consultant appointment has been cancelled 3times in 6months so when I see him it will be 2 years since last appointment. I ‘phoned them about it but they couldn’t care less - told to call the nurse . I agree with you completely. I’ve given up trying to contact biologic nurse as I never get a proper response. However when I go in for my infusion I ask to speak to the nurse then but even then I’m made to feel I’m wasting their time. So I don’t bother anymore and try to sort it out myself.
I live on Wirral in northwest England and at our clinic we are given a direct line for the Rheumy Nurse team. It does often go to ansaphone, but they usually return the call within the day. I have always found the nurses to be responsive and interested, they are not offhand at all.
We have a Consultant-led clinic, it's slowly getting back to normal after Covid.
I'm pretty new to having a team in my corner. i started leflunomide a few months ago. this pouch is what came when i picked up my first prescription. monitoring helpline, and told to ring if 'any questions'. prescription line for when the next lot needed to be requested. the only time I've used it so far is when i called the prescription line, left all my information, then didn't hear anything for two weeks. luckily i had given myself much time (because nothing ever works right and sometimes it takes a couple of tries to get out of the house). but i phoned the pharmacy who said i needed to ring the rheumy hotline. someone answered right away and then it was sorted completely by the next morning, with good inter office, and me in the loop too. when i went in f for one monitoring session, i asked, where am i supposed to check in if something new comes up, with rheumy or gp, now? she went over with me what to contact them first for and what kinds of things to take to the gp first. it was really helpful.
just been through screening fir biologics. things may change. I'm sure I'll have more experiences. i wish everybody got what they needed!
photo of 'welcome pouch' that includes phone numbers to ring to reach the rheumy folks.
I actually saw my consultant in May for the first time in over 2 years. He was helpful, but I have no idea how long I will have to wait for my next appointment. It seems to be pot luck and whether anyone notices I've not seen anyone for ages. I usually see the Bio Nurse but she is off sick a lot! As for seeing my GP, I gave up on that a long time ago. The only time I hear from the surgery is when they need some boxes ticking.
They do send blood forms if they pick up my messages though.
Oooo I feel for you we have 3 in the RA dept and I love them all they are fab, get back asap with a day, come up with solutions, listen and they're sympathetic.
Not sure how but I'd would want to feed back the lack of support through whatever system you have in your area. Link to PALS
I’m in West Herts and my Rheumatologist is amazing, but I think I’m one of the lucky ones. We went through a period with no specialist nurses, I was told they left after Covid. We still have the Helpline where you can leave a message, I think whoever listens to it phones the patients Rheumatologist. If I need to I just ring my Consultants secretary and that usually gets sorted straight away.
unfortunately this all sounds pretty standard. I have been seeing my Rheumatologist privately since I was diagnosed by him 8 months ago. I knew I wouldn’t get anywhere fast on the NHS because my inflammation markers were not high (although my hands and feet were severely swollen), so I referred myself.
Since all of this, my GP has asked me if I want to be referred back to NHS Rheumatology for monitoring and I have said no. I am lucky that I have the option to see or email my Rheumatologist whenever I need to. If I ever need biologics (hopefully not) then I think this would have to be managed on the NHS though.
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