What is a Lupus/rheumatology nurse?

People in this forum keep referring to a lupus or rheumatology nurse, but I have never encountered or been told about either and have no idea what they are or what they do. Can some-one enlighten me please?

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  • Hi,

    At my hospital, if the consultant wants to 'monitor' you when you go on a new drug, but doesn't expect a disaster, then you may be given an appointment with the Lupus nurse (lupus specific trained or rheumatology more generally trained - covers more disorders), bloods can be taken, concerns talked about, before your next consultant appointment, and the consultant doesn't need to be involved unless the nurse thinks its going wrong!

    Like at the GP there is often an asthma nurse ( with special asthma training) who deals with patients after first diagnosis, so you only see the GP if there is a significant change in the state of your asthma.

  • Thank you A. I can only assume there is no such thing at my hospital. My GP hasn't ever mentioned one either.

  • Hi. There aren't very many specialist lupus nurses. They tend to be positions that LUPUS UK funds and at the moment, most of them are in the bigger hospitals. We certainly want to fund more across the UK because they do improve services for lupus patients in those areas significantly.

  • Thank you for this Paul. Well, well done to Lupus UK for funding these, it's a shame the NHS don't fund specialist Lupus nurses themselves as it would save them money in the long run and help patients cope better.

  • This post has made me realise how lucky I am .......I can ring my nurses directly if I have a problem,I leave a message and they will always get back to me either that day or the next (and they are lovely and really understand Lupus-you don't even have to explain to much-they know the condition and can tell by your voice that you are suffering!!)..... I filled out the survey yesterday (not realising that ALL areas do not have this service,) This service really helps me and gives me 'peace of mind' that help is just around the corner-and SHOULD be available in ALL areas!!! Surely the NHS should fund this and not LUPUS UK??? Also makes me worry that this could end if there are 'changes' within my hospital-something that could happen as they have recently closed the A&E?

  • That sounds absolutely brilliant, yes. I have asked my GP for a referral to St Thomas's Lupus Clinic, but haven't heard anything yet, so with luck they might have a lupus nurse there (if I ever do hear from them). Thanks for your response.

  • The NHS does sometimes continue the posts after our initial funding ends. Funding is a problem all across the NHS, especially as their budgets continue to get cut.

  • Where I am I don't have a specific nurse (Leeds isn't as fab as down south to have such fancyness) but I DO happen to have a Doctor who I ALWAYS see at the hospital every four months- at the renal unit- and if I ring them up they are so so lovely to me all the nurses- they know what I need and they know what to do - not because they're specialists but because they know ME. You don't need a specialist to go to constantly as far as i'm concerned- just someone who liases with a specialist and knows you really well! <3

  • Hi, you don't have to go toooo far south, they have one in Sheffield ! ;)

  • Thanks L. There's no fancyness here either, but I wish there was as between rheumatology appointments I am on my own which is why this site is a gosend!

  • I had never heard of a rheumy nurse in the 7 years since diagnosis but I'm seeing one in York to monitor a new drug I'm taking.

  • The nurse may also have the title "Connective Tissue Disease Nurse Specialist".

    We have a fab one here. She operates out of the Connective Tissue Disease clinic at the hospital sometimes on the Rheumatology and Orthopedic ward too.

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