Would you good people be kind enough to say if you have access to a Rheumatology Nurse? If so, how do you contact them, what part of the country do you live in & what sorts of things do they do? (joint injections, aspiration, drug counselling etc.) Also, do they have freedom to act on their own or do they just take instruction from the consultant?
The reason I ask is that in West Lothian, access via phone is reserved for patients on biologics. The rest of us only get to see the R Nurse if the consultant sends us. With a minimum wait time of 8 months between consultant appointments this doesn't make for a lot of professional advice to go round. I appreciate that resources are limited but just wondered what other people experience.
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Hi I'm in Dumfries and we have very good access to our Rheumy nurses. There is a helpline and when you leave a message they usually get back the same day. I've never been on biologics but hydroxy and metho. I have seen the consultant 3 or 4 times but it's mainly nurse-led unless there are problems. I feel they do make some decisions on their own but if there are any hitches a consultant is always informed and they ultimately decide about the drugs. Hope that helps a wee bit? Xx
Ditto, I tend to see the Rheumy nurse more than the consultant, again I'm based in Inverness. I have the nurse's clinic telephone number, which I've used today to equire about my methotrexate injection appointment. The telephone message says that they will contact me within 72 hours.
Hi, I'm in Staffordshire and my experience is exactly the same as lisamcb. To be honest the treatment I have had from the nurse led team at the Haywood has been excellent.
I am a patient at a community rheumatology clinic. There is a marvellous rheumy nurse attending most days. I spoke to her myself yesterday after receptionist put me straight through. I go for my routine bloods at the clinic also and if I wanted to see rheumy nurse I could arrange to do both in one visit. I always see the a Rheumatologist and its three monthly at moment. The rheumy nurse does injections, sends prescription thru for drugs etc. there is another nurse for blood/urine tests.
Hello! I see my nurse roughly every 6 weeks, but I was only diagnosed in feb so they're doing a lot with meds at the moment so the frequency of appointments may change later on. I see my consultant every 6 months. My nurse deals with meds and I can call her during the week. She hasn't offered any further support with things like physio or lifestyle alterations but she gave me a leaflet! I think she's got a high case load so hasn't much time to do more than meds. I'm in Warwickshire. Hope you get the support you need soon! Simone x
I live in Warwickshire and my rheumy nurse is on call all day. I have the hospital number and i just have to tell them her extension number and i am through to her.xx
Hi. I live in Essex and my appointments are 3 monthly alternating consultant/nurse. Rheumie nurse gives steroid jabs, on consulting with doc, and is available by phone and gets back to you in 48 hours. X
I see my consultant about every 9 months now, and the nurse less often. She's a specialist nurse so can do a lot of things within the parameters set down in my notes. So adjusting dosages etc of the many drugs I'm on, but to prescribe a new one she'd have to check with consultant. But the most useful thing is that I can leave a message for her, and she'll normally get back to me in a day.
In our area there is a rheumatology nurse helpline. You can ring for advice anytime , they will ring back within 24 hours if no one is available. If necessary they can make you an appointment to see a nurse for injections or aspiration etc. or refer you to a rheumatologist or podiatrist. Sometimes I get alternate appointments with the nurse/ rheumatologist if I need to be seen more often than every 6 months. Nurse led clinics often have longer appointments and they will take time to talk through anything that is worrying you.
We used to have an excellent service from the rheumy nurses, but unfortunately staff have left and have not been replaced. Now I can only leave a message on Monday or Thursday mornings (which is when the out-patient clinics are on, so I know I won't get an answer then) . The message says that someone will ring you back, but so far I have not managed to contact a rheumy nurse since this arrangement came in - I can hardly stay in every day until she is able to call and I suspect that she rings, gets no reply and has not got time to repeat call. I have complained and the consultant is aware of the problems but unable to do anything about it.
Can you email? I am a specialist nurse too - different field, and I see face cto face in the region of eight to ten patients a day, so not able to take calls at those times. I have one colleague and we have 1700+ patients, some who dont need us at all, some who are very anxious and need a lot of support and others who imagine we only have a few patients and can call every single patient personally with normal results
Every morning we come in to around 10-12 voicemails and possibly manage another twenty to thirty calls, messages and texts over the course of the day between patients.
We get caught up in phone call ping pong - calling people back and getting no answer and then again and again. We encourage our patients to email where possible, 1) it is sometimes difficult to work out who has called (they forget to leave full name or DOB, and 2) we can each pick up responses at convenient times.
I realise how frustrated everyone gets with the massive cuts in services, but I assure you I don't know a single healthcare worker who voted for this
If your clinic doesn't have email contact maybe suggest it? We like it because we can do virtual clinics almost, we can prove we gave correct advice if there are any misunderstandings, and patients have the email to re refer to.
I think email would be great but that option isn't open to us either. If you can get the rheumatology secretary on the phone (big 'if') you can ask her to pass a message to someone but this is less than reliable & not very quick.
I know resources are very limited & I don't expect handholding since I've been managing this thing, mostly alone, for 25 years. However, it is hugely frustrating knowing that, for instance, a joint injection would be just the thing just now, but you need to wait till your consultant appointment in 6 or 7 months time to ask for it.....and then wait however many weeks it takes to get to see the nurse who will give it. There's a lot said about minimising damage through prompt treatment, but precious little actually done.
Do you have patient participation groups? Or PALs? You really should ask them to look at how they are delivering their service, it maybe it needs a bit of a rethink.... In my job initially we were seen as an extension to the consultants secretaries at times - we soon put a stop to that, adding more nurse led clinics and taking strictly administration jobs back to the administration team... Patient feedback is how we improve. Do you have a local support group who could lobby a little?
The Scottish system is a bit different. There's a Complaints Team which handles everything, including compliments! It's a bit of a labyrinth but I probably should try with them again. There are so many ways things could be made more efficient and thereby, more useful and user friendly.
NRAS has just started a group in Glasgow - about 40 miles away - although geographically, it's in a different health board area I suppose it might be worth seeing if they'd do anything over here. I've just had another experience of waiting 5 weeks for a letter to go to my GP to say I'd to start leflunomide. They pretty much admitted on the phone that it had only been sent then because I was on the phone chasing it. It really isn't good enough.
NRAS have a group of Scottish ambassadors who are trained to raise awareness about RA and speak to service providers about NRAS and make sure that early diagnosis is a priority, flag up the need for more follow up consultations, attend meetings of groups such as the Scottish Medicines Consortium and much more besides. Same goes for Wales.
NRAS groups only work as well as those who are prepared to help run them - this requires people to put energy and time into forming and sustaining them. Everyone involved in a group has RA and therefore diminished energy levels that go with a fluctuating disease. But there are many things going on behind the scenes usually and this includes lobbying for more specialist nurses in Scotland I believe. If you want to learn more or get involved in campaigning then you could contact NRAS and ask about becoming a volunteer and supporting these kind of campaigns or setting up a group near you.
Twitchy
I live in Greater London south west area, my consultant and specialist nurse work out of two hospitals. When I was diagnosed I was given telephone and email addresses for both consultant and nurse at both the hospitals and informed I can contact them at any time.
When I required urgent treatment I have attended either clinic but always reverted back to normal one for ongoing treatments. My nurse can change my medication, up doses, arrange scans etc. give injections and supervises Wednesday's infusion days. Now I'm on biological I see either consultant or nurse every six months, however I am in contact by email if things are off kilter, and an appointment can be arranged sooner.
I have found that emailing is the better route, it gives them the chance to see at their convience (in between patients) plus if they need to speak to me they will contact me by phone or arrange appointment, if not they will rely by email.
I live in Corby Northamptonshire & I have to say it's quite poor, you have to leave a message for nurse specialist & the can get back to you within two to four weeks! My appointment with specialist was cancelled in March & rescheduled for June (which I'm expecting to be cancelled) it took me five weeks last time to catch a nurse phoning me back only because I was off work for another hospital appointment. It's very disappointing because sometimes I have two wait three weeks to see my doctor,sometimes it feels like I have nowhere to turn to, but when they do contact me they are very helpful & apologise for not being in touch sooner. Gentle hugs Michelle x
Hi, I live in Hertfordshire, my first nurse was brilliant and would up and down meds and you could pop in and speak to her. Unfortunately she left and my new one (of 7 years) never seems to be involved at appointments. On the 3 occasions I have phoned her you always have to leave a message and she will call you back (eventually) but has never been able to advise me on the simplest things. Hope yours will turn out to be helpful.
Hi I live in Suffolk, I have the no. for the nurse who I can ring if she not there the rheumy sec will take a message and nurse will ring back later that day. The last time I saw the nurse was over two years ago but have spoken on phone.
thanks for all the replies. They make for very interesting reading &, as I suspected, many areas seem to have a much better service than we do.
Something to harass my MP about before the election I think!
I just get so fed up with everything taking ages....even to start an additional DMARD (sulfasalazine) I had to wait for the consultant's letter to get to the GP (6 weeks) and then wait for a GP appointment to get a script written (3 weeks). To add insult to injury I lasted a total of 10 days on the sulfa until an allergic reaction brought that experiment to an abrupt close. I am now whiling away the weeks till my planned review with the Rheumatology nurse (mid June) to see how I'm getting on with my new medication. It's not even possible to get a message to him to let him know what happened in advance of the appointment so he can come armed with a plan.
If I'm very lucky I might get a new 3rd DMARD just in time for Christmas
Hi, only just seen your message and I am in a similar boat with regards to nurses as you are. I have OA and something else which the three consultants I have seen so far (each one only once!) are apparently not sure of what exactly it is. I was told RA but last time I saw a consultant and asked about access to a rheumy nurse I was told they could only send me to one once they know what I have.... grrrr. Meanwhile I have been given HCQ and suffering badly with side effects so that after 8 weeks my GP said to stop only for the consultant I saw 4 weeks later to say start them again in a different dosage. *headshake* I feel a rheumy nurse I could have asked at the beginning of the trial could have helped much more efficiently but now I have to wait again til I see a consultant (end of august). I'm in West Sussex by the way.
Sorry to whine and not be terribly helpful but at least you are not alone feeling a bit leftout...
no - I don't think it is whining. I've been dealing with this half my life & somehow both the disease & the Health Service only seem to get more frustrating. Time for some deep breaths....
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It's not even possible to get a message to him to let him know what happened in advance of the appointment so he can come armed with a plan.
Access to consultation?
CAN'T WAIT TO ACTUALLY SEE THE NHS RHEUMATOLOGY CLINIC!
Advice please 😱 Rheumatology appointment brought forward following my complaint to the rheumatology nurse 
Rheumatology Nurse
Worth plundering the piggy bank? And am I even allowed to?
