“Rheumy Nurse”

[EdieB]

This is a great site! Reading all the posts, I keep seeing everyone talking about a Rheumy Nurse. Is that some one in the Drs’ office or a separate entity?

[helixhelix]

It may well be a European thing, and if you are in the US perhaps different. In England and France (don't know about other countries) the hospital rheumatology departments have specialist nurses. They have their own clinics, and also supervise infusions. There is usually a helpline number associated with them that you can phone, usually to leave a message and they phone back.

[EdieB in reply to helixhelix]

I thought what you had posted but it is interesting to read about how other countries deal with medical issues. Thanks for the info and have a good day!

[EdieB]

Thank you. Have a good day!

[nomoreheels]

In the UK our hospital Rheumatologists have a support staff of 'Rheumy' Nurses & Nurse Specialists/Prescribing Nurse Specialists, these are collectively usually known as Rheumy Nurses & have their own clinics & generally run a helpline support. At our GP Surgeries, where our General Practice Doctors (Primary Care) are based we also have Practice Nurses who are usually Sister grade. If drug monitoring blood tests aren't done at hospital then the PN or Health Care Assistant takes them at the Practice or Surgery.

Hope this is helpful.

[EdieB in reply to nomoreheels]

I understand the difference between the US and the UK now regarding how the medical world works. Thank you for responding and have a great day!

[Hidden]

Hi Edie

I use the Rheumatology Dept helpline quite a lot. They return my call, with directions/advice, within 1-4 hours. It is wonderful to know I can call them in between appointments at Rheumatology Clinic.

I will use this system tomorrow to find out if my blood test taken today shows improvement, and will be given advice either way as to how to proceed.

The nurses who take the messages and return the calls are also those whom we see at the nurse led clinic when it is not urgent to see the specialist rheumatologist doctor.

Here in SW Scotland (🏴󠁧󠁢󠁳󠁣󠁴󠁿 St Andrew’s Day today), this is, I think, a very helpful tool in managing RD patients with self monitoring.

Hope your experience is positive.

Angela

[EdieB in reply to Hidden]

Thank you and good luck to you!

[nomoreheels]

This is why I said generally, I've noticed some don't have the benefit of a helpline Elf. Have you asked if you have a contact at the hospital or a helpline? I shouldn't think being given the number of it is determined on whether you're worthy or not. You may well have one & they omitted to inform you when you were diagnosed. Were you given an info pack with your next appointment date & a leaflet on your initial treatment? It's sometimes included in with those, a sort of welcome pack. I have a named Nurse Specialist, she deals with any of my phone queries & it's her I see at my nurse appointments. To be honest unless I know it's not something she can help with I prefer to see my GP, she deals with all my OA needs, meds & referrals & since I signed up with her after my previous GP retired. She also works extra hours at my hospital & has taken upon it herself to learn about RD so is very clued up, I'm fortunate that she's still eager to learn about Specialties.

You do have the option of changing hospitals if you're not satisfied with yours, you could even ask here for recommendations for your area? Can't help to at least enquire if you lack confidence in your team. I considered it once, even did a dummy run when shopping in the area to see how much longer it took to get there. Whilst where I attend is not as good as my previous one things have improved since my Rheumy returned from extended leave & the weight has been taken off her workload by an excellent SpR.

[weathervane]

My rheumy nurse is connected to the rheumatology out patients, i can phone and leave a message and she phones back with 48 hours so its not for emergencies. I have found them very helpful as they can check things with the consultant if you have a problem.

[nomoreheels]

As I mentioned you can ask here if anyone has good experience of a hospital or Rheumy near you, that of course will mean you'll have to say either where you attend now or the town/area you live in or are prepared to travel to. Then you can ask your GP if there's an alternative he/she could recommend as well & when you've decided then ask for referral. To get some idea you could use the NHS Choices Hospital Location Search nhs.uk/service-search/hospi...

[Fra22-57]

My specialist rheumy nurses are attached to the department. If you have concerns in between appointments to your rheumatologist u can call them they can get you a emergency appointment or sometime sort things for you

[Lyneal]

My Rheumatology nurse is at the hospital, they are great very knowledgeable.

[EdieB]

The medical field is quite different in the US. Sometimes great others times not do much. Waiting for a call back from the Dr. to answer your concern can be a long time. Of you have to go see him to get an answer.