Rose Tinted Spectacles Rheumatology report?!

[girli1111]

I saw a rheumatology nurse at my review the other week (9 months since last time). Letter came through post today to GP, copied to me. Now we had a fairly positive meeting, but certain phrases used have really rubbed me up the wrong way, as I don’t feel they accurately portray what I was communicating. Would you bother correcting or is really not worth the bother? It also states that on inspection I had just two tender joints, well all she looked at was my hands by briefly holding them for about two seconds.... I told her that I’m in pain most days in my knees, back, hips, elbows and always my hands..... my next meeting is not until September.

[Sal-1]

Ask to be seen again as it seems like your views were not taken into account.

[lovemydoggy in reply to Sal-1]

Yes. Your doc wasn't thorough enough. I think maybe a consult with another Rheumy would be on order if you don't get anywhere.

[Hidden]

I had a similar thing happen with a consultant. It felt like he really had a prior agenda and hadn’t heard what I was saying. I rang to complain and ask not to see him again ( I’d seen him twice) they were a bit snotty about it trying to say it wasn’t wrong but I have never seen him again and it’s on my notes to not see him. I’d ring and discuss it with them if it’s made you feel like that, see what they say. It’s not nice to not feel listened to. Good luck.

[Shalf]

Maybe the nurse misunderstood you? I would give her the opportunity to listen to your concerns and to make amendments to the report. It's important to have things recorded correctly so I would phone and ask her to get in touch with you. Highlight the areas in the letter you wish to address.

[helixhelix]

Personally I would put your concerns in writing so it is clearly on your record, and send it to your rheumatology department, copied to PALs & your GP. You can write very politely, making clear this is not a formal complaint just a desire to have accurate information on your file as the GPS letter shows there has been some misunderstanding.

Telephone calls aren't often recorded on your notes.

[New50 in reply to helixhelix]

That is a very useful advice. I was a bit miffed when I left rhumey as he seemed to ignore me. Sorry what is PAL,s xxx

[helixhelix in reply to New50]

Patient Advice and Liaison service. There's one in every hospital - often with an office by the main entrance. Should be shown in the hospital information.

[girli1111 in reply to helixhelix]

Thank you, I think this is what I will do. We wait so long to be seen that it’s not acceptable to have an inaccurate record. She was a lovely nurse, and it was quite a ‘chatty’ consultation, but I think she failed to draw out the important medical information in her letter.

[StormySeas in reply to girli1111]

I agree with helixhelix. I think it’s important to have correct information on file, especially when our appts are so far apart and treatment might be dramatically delayed. Same happened to me with a doctor. I didn’t challenge the report at the time and the next appointment, months later, was based on these inaccuracies.

[Shalf in reply to helixhelix]

Sounds better although my phone has an automatic recorder which is pretty useful 😄

[Mmrr]

A letter of your dissatisfaction sounds like a way to go.

I've found complaining does get people to listen to you and record more accurately what is said.

[Lina282]

I had a similar experience with a nurse when she didn't touch me anywhere and she put in her report that my RA is well controlled, no synovitis and she put nil side effects from medication. Even if I said I have pain here and there she said that it's all caused by my fibromyalgia as there are no redness and swelling.

I never had big swollen joints and redness.

It was last year in May and then I went to my GP and she offered to send them a letter not to see the nurses. Then I had an appointment with my rheumy and he was influenced by the nurses and he didn't listen. When I wanted to say something he cut me off so there was no chance to talk about side effects or pain I still have.

They seem to believe that everything is well controlled and all my pain is caused by my fibromyalgia.

I asked for my gp-s advise and opinion on this and she said that she could refer me to another hospital.

If you ask for correction on their report I think they'll find it offensive or inappropriate and they don't treat you as before...That's what happened to me after my GP wrote a letter not to see the nurses.

[helixhelix in reply to Lina282]

Did you see and clear what the GP wrote? Pehaps GP was not tactful, or has a bad record with that department? I've always found writing polite letters myself has had good results.

[Lina282 in reply to helixhelix]

I didn't see the GP's letter but when I received a response from my Rheumatologist then I asked my GP and I found out that she wrote that I don't want to see any of the nurses. I just wanted to avoid one of them.

My biggest problem is after I saw the nurse in May, I rang the advice line in September as I was having some painful swollen areas and wanted to discuss this with them, they told me on the phone "You don't see us nurses do you? So you have to go to your GP." So I waited till December in the hope that my Rheumatologist will help but he did not listen to anything I had to say, didn't care about my side effects and any pain I still have. Also told me that my RA doesn't cause lower back ache (in my sacroiliac joints) or any rash I have.

I didn't make any complaint and didn't do anything ....but I still have stomach ache when I am thinking to go back there.

[MissMinto]

Lots of good advice here - it is important that your notes reflect accurately how YOU feel (as opposed to just their opinion/impression) because patients are often discussed in meetings between rheumatology department staff and decisions made based on what is in your notes. I am a great believer in paper trails, and have at times written to the rheumatologist/nurse and copied in my GP.

Carrying the feelings that you aren't being heard, until your next appointment in September, won't help your health either - best get it off your chest I think.

[girli1111]

Thanks all, it was a reasonably positive consultation, but I will correct any potential misinterpretation in a letter to be sure my records are up to date.