The value of rheumatology specialist nurses: Your experiences needed

[Victoria-NRAS]

Hi all

We are looking to get some positive stories together for a report examining the value of specialist rheumatology nurses.

If you have had a particularly good experience with your specialist nurse, please can you tell us about it, by replying to this thread.

This could be a description of a particular situation they helped support you with, or it could be more general, looking at the role they have played in your healthcare.

I appreciate that not everyone's experiences are positive, but I know from speaking to people that for some, the specialist nurse has been a vital part of their healthcare team, and we would love to hear more about these positive experiences.

I cannot guarantee that all your comments will be used, but it would still be really useful information.

I look forward to reading your experiences.

Kind regards

Victoria

Information & Support Manager

[Elswick]

My rheumatoid nurse is brilliant she always picks me up when I am down she explains in detail about my problem what the meds are doing for me she makes me feel individual I look forward to seeing her at the moment because my rheumatoid is active and not under control it’s every 6 weeks big thanks to her

[Pat9442]

My Nurse, Sarah, is brilliant. I have used the helpline quite often and she always offers good advice, gets me in to see her, or the consultant if necessary, arranges steroid injections if needed. I also see her (although in passing) every four weeks when I go for my tocilizumab infusion and know if I needed it she would be there for me

[Hidden]

I asked my OH for his feedback. He said 'I have been seen by one of the Specialist Nurses approx every 6 weeks over the last 9months. They are a really good sounding board for any concerns. They have always seemed interested in me, not just my disease. They also run the helpline so it is a good overall support'.

[keeta]

My Rhuemy nurse. Is a lovely lady but hasn.t got a clue about RD.on lots of occasions when my own GP.has asked me to ask her a question.and she says one thing one week and denies it the next. And its allways wait and see.

My Rhuematology doc and my own GP are so good kind and patisnt .xxkathyxx

[Mmrr]

My rheumatology nurse is responsive, and gets back to me with sound advice. On several occasions she has spoken with the consultant on my behalf regarding a medicine change.

[Ruth12345]

I dont have a rheumy nurse. I see rheumy every 3 months now and its never been mentioned. Im going to ask him next time I see him. Diagnosed with RD 2 years ago.

[Shalf]

I have two! A husband and wife who work in same department. The male is a biologics specialist nurse and his OH is a Rheumatology nurse. Both are caring, patient, sympathetic and good communicators who explain things exceptionally well, down to earth and compassionate and are happy to answer any questions or concerns.

[HappykindaGal]

I have a biologics nurse. She is amazing and incredibly caring. When I was offered Biologics, I was due to go away for three weeks. After the blood tests etc..., she was determined to do the initial appointment before I went away and came in at 9am on her day off. I protested that it could be done on my return, but she wanted the best for me and insisted on coming in solely to see me. She definitely went above and beyond for me.

[Jacey15]

My nurses are brilliant. They are so much more approachable than the professor who is my consultant. They have squeezed me in to their clinic when I've been really struggling so that I was seen the same day. They have put me on new meds, arranged appointments for physio, hand therapy etc. They always call back when I leave a message on the helpline and I want to ask about my blood results, medical or infections etc. Their contribution to my care is invaluable.

[TPaine]

I have a team of nurses with different roles but they all help with urgent calls via bleep system and with the helping. One of the nurses I have seen from the beginning so over 10 years, helped me move towards med changes and bridged the gap between me and my consultant who I don't have a very good rapport with and dread seeing. She appreciates I am more at ease with nurse consultations so where that's possible this is supported. I know they are available in between appointments for advice and have led concerns around adverse effects, infections and managing meds and blood tests around all of this. They are human, have empathy and actually ask how I feel rather than just what my symptoms say. I am allowed to be sad and they then help me to see the positive in the situation. They make the difference for me definitely. My GP IS also excellent and recognises I am a human first and patient second, so I feel lucky as it's only my consultant who is unapproachable overall.

Tracy Hertfordshire

Service is east and north Herts trust.

[stbernhard]

From the first moment I new that Helen is a wonderful person. She treats me as a human being, is sympathetic, understanding, supportive, funny and has an open mind. She helped me to believe that I have the strength to be in control of my RA and live well with it, and she was right. I owe her much.

[Rubyroo1]

I haven't experienced any of them as yet, and haven't been given any contact details for them.

[Victoria-NRAS Partner Moderator NRAS]

Hi all

I just wanted to say thank you very much for your comments on this thread. They were really useful and interesting to read.

For those of you questioning whether you should have a specialist nurse, most rheumatology teams do, but some don't, so you can always ask if there is one, but don't be concerned if they don't, as not all do and every department is framed slightly differently.

Many thanks

Victoria

(NRAS)

[nothingseems2work]

My RH nurse has been with me every step of the way since being diagnosed in 2014, explaining, given steroid injection s and picking me up every time some drug or other hadn't worked, never giving up , discussed what can be done next with the specialists and just being my constant as consultants have come and gone. I really feel Covid has put a stop to my hospital care, and Sally isn't there at the moment. Just getting by, hoping for better times.