Rheumo nurse

[Annemarie24]

What is the role of the rheumo nurse ? I have seen her once for about 5 mins , the nurses talked about new meds, i asked about pain relief she told me to go to my gp (there useless), i thought the nurses job was to ask how I'm doing /pain level/discuse about rheumo , but i dint get any of that, just wanted to check this is correct

[Sockknitter]

She is my point of contact with the Rheumatology team at the hospital. I have a phone number to contact and leave a message. I have contacted her for advice when I have an infection, think I need a steroid shot and to discuss side effects of medication. She either advises herself or speaks to the consultant first. She has arranged appointments with ancillary services like Physio or OT when appropriate . If things are ticking along, I have a 3 monthly scheduled appointment with her instead of the Rheumatologist. I find them sympathetic and helpful and generally less rushed than the Consultant.

[Annemarie24 in reply to Sockknitter]

It was the other way round for me , the rheumotoligist was realy nice took alot of time with me , but with the nurse i was in and out , im going to phone the number she gave me later my arms been swallon for 2 days im in alot of pain hopfully she will be more helpfull this time .

[Dobcross1]

I can only speak for my local team but TBH they are as good as the Rheumatology consultants - I have a follow up with a nurse next month and will get asked the same questions a consultant would have asked. Though I do get pain relief from my GP...

[Nuttyshirlz]

Hiya my Rheumy nurse I would say is my Dr right hand. I tend to see her when not seeing him. She seems to do same things. Given me injections up my pills and she also has started me on pills. I can ring or email the team too if I need help. I normally get about 30 minutes with her. 🙂

[Annemarie24 in reply to Nuttyshirlz]

Defiantly not the service i recievd lol hopfully she was just realy busy but it did affect me alot , i felt very down after leaving i was hoping she was going to sort some decent pain meds out and talk to me about how to cope and that , my partner is anti docters and although I have spoken in lenght about rheumo i don't think he understands, it's hard with out allot of support , my partner does work and helps allot with our children but he's just not there for emotional support

[Nuttyshirlz in reply to Annemarie24]

Maybe she was running behind. But still you deserve your time with her. Don’t think anyone really understands what we go through unless they have it. It’s like talking to a wall sometimes. When you get your next appointment write everything down. Or you could email them and ask. Mine likes to give me booklets. To pass onto family and friends

[gilox in reply to Annemarie24]

So many people have no understanding of this issue, it tends to get lumped together with so many other conditions, favourite of mine is “ oh I have that in my wrist/ finger/ big toe etc” hopefully next time you see her she will be more helpful. If you have questions write a list before your appointment, never be fobbed off!

[Kerensa21]

That’s not good annemarie: I had an early one like that, you’re right it’s bad enough being diagnosed with this without someone bringing you down more ☹️ I’ve had some lovely ones since so 🤞for you too x

[AgedCrone]

It’s a shame you didn’t have a satisfactory meeting with your rheumy nurse. Most of us find our rheumy nurses very helpful.....maybe yours was just very busy or having an off day? Why don’t you write a list of questions you need to ask ,& the next time you see her that would help make things clearer. I don’t know how long you have been diagnosed, but it does take some people a little bit longer to get settled on the right drugs.

Rheumy nurses have done specialist training in Rheumatology after qualifying as an R.N. and they liaise between the patient and the rheumatologist. They decide if your present condition does merit a new consultation with the rheumatologist. Some more senior nurses can also prescribe some drugs.

If your nurse told you to go to your GP for painkillers, she presumably thinks that it is painkillers you need right now, and you don’t really need to see your rheumatologist right now.

As you know there are not nearly enough Rheumatologists to go around and appointments with them are like gold dust. Unless you have longterm pain issues, you would not get an appointment with the consultant unless your nurse thinks your RA drugs need reassessing . In an ideal world we would see our consultants much more often, but sadly right now that isn’t possible.

On the whole GPs don’t prescribe Rheumatology drugs, they just write the scrip, for the drugs that the rheumatologist prescribes.

But they are up to speed on the right painkillers to take in conjunction with the actual RD drugs you are taking.

Hope you get a GP appointment soon & get some effective pain relief.

[KittyJ]

I’m sorry you feel you should have had more from your rheumy nurse. As you are very recently diagnosed and just starting meds then there is very little I would think the nurse could do at this point. Going through your new meds with you sounds about right. I’ve had appointments like that. They can vary depending on what is needed to be done. I would go and see your GP for pain relief. It does take time for meds to have an effect and it’s horrible waiting to see if they do, so effective pain relief in the meantime can help.

[Gnarli]

The rheumy nurse I keep getting must have trained with yours. Worse than useless, if I never see him again it would be too soon. I shall be asking for an alternative nurse in future and start making a formal complaint about him. We don't need this sort of aggravation

[AgedCrone in reply to Gnarli]

Formal complaints can come back to bite you Gnarli.

Maybe it was just a clash of personalities with that nurse...I changed nurses way back because I just didn't take to a nurse.

Your next nurse would know about a complant...I’d just ask to change if I were you.

[Gnarli in reply to AgedCrone]

Good thinking, AC, and thankyou. Fingers crossed I won't need to see any one from rheumatology for a good long while. The problem is that if I have to ring the helpline it's always that one nurse who responds.

[AgedCrone in reply to Gnarli]

Maybe if you need to make an appointment, just call the main hospital number & ask for rheumatology.

At My hospital the rheumy nurses don’t answer their line themselves there is a young girl who takes messages ....who doesn’t understand a word you say-but if you phone the main hospital and ask for the rheumatology department at least you (usually) get someone who is a permanent member of staff & knows what they’re talking about!

I know that sounds a bit crafty but when I do need to speak to my rheumy nurse..... I do need to speak to her. I phone her maybe once a year and I don’t want to have to spell Rtx or any other drug to a young girl who takes five minutes to think about things.

Hope all goes well and you don’t have to call!

[Annemarie24 in reply to Gnarli]

Haha i hope it wad just a busy day but waiting room was empty , i phoned the number she gave me today at 11am left a message , not heard back not sure how long your ment to wait for a reply ? Just a pain playing the waiting gme

[Gnarli in reply to Annemarie24]

Sorry for griping yesterday. Most rheumy staff do an amazing job. Informed and knowledgeable, they are able to answer questions, advise on medication, issue prescriptions, administer injections etc etc. You can't expect to like everybody and we all have off days don't we. Unfortunately, with our condition we have to learn patience and, yes, it is a pain. I hope you get your answers addressed very soon

[gilox]

The rheumy nurse I see is wonderful, unlike some of the doctors I’ve seen she actually listens to what I have to say, acts on any problems I’m having,over the 17 years that I’ve had RD she has become a friend that truly understands! Dreading the time when she decides to retire! So sorry that you don’t have the same.

[Peacox in reply to gilox]

My first Rhuemy nurse was like this. Sadly for me she did retire. My last appointment with her was really moving, she gave me a big hug and had a little cry. My new nurse is really good, but not quite the ‘friend’ I feel I had with the first one. She is excellent though, so no complaints.

[BoneyC]

Unusually for me, I saw a "Psoriatic Arthritis Nurse Specialist (Rheumatology)

" this week. I don't usually see a nurse, it's always a Dr. We had a chat, mainly me saying GP surgery have missed checking my ESR for months, I didn't receive letters from elbow and foot surgeons, was refused an OCT test due to not meeting criteria despite being on HCQ over 10 years etc. etc.

She commented "your hands look swollen" and miraculously from that, in her letter, she worked out I had a DAS score of 3.73! I kept my jacket on the whole time and she didn't see or examine any joints.

She asked if I felt the NHS were managing my RA ok. I replied, I manage it myself, they prescribe a few drugs and I bung them a little bit of money!"

[Peacox]

Mine is wonderful. Again, I’ve had nothing but good experiences with the two Rhuemy nurses I’ve had since my diagnosis in 2012. She really is my pont of contact, always on the end of the phone when I need her (although she’s not there every day) and I have to say, makes me feel that my care is in hand. I’m sorry you’ve not had such a good experience.