Some of you will know that for the past 6mths I've been experiencing a few issues regarding the re-emergence of some symptoms, that seem to have resulted in some discord between myself and the rheumatology clinicians!
My regular rheumatologist referred me to her colleague, who unfortunately was extremely antagonist, unsympathetic, obnoxious and seemed totally void of any real or meaningful understanding of PMR or steroids.
Some of her advice was completely incorrect, and as a result of this consultation I was prompted into making a complaint.
However, today's consultation with my regular rheumatologist again, couldn't have gone better.
She was apologetic, attentive, empathetic, and considerably more helpful than her colleague had been.
We went through the follow-up letters and she explained everything clearly, answering all my questions and enabling me to have an opportunity to express my thoughts and wishes when planning the next steps of my treatment plan.
I'm so pleased I persisted with stating my case and didnt allow the unhelpful rheumatologist to force me into the course of action I didn't feel I could agree to.
Self advocacy isn't easy but if you know something doesn't feel right then absolutely don't agree to it until you have all the reassurance, evidence & information you need to be confident that its the right course of action for you.
Written by
Kendrew
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They certainly do sound alike. I for one am happy that the Prof has retired. I saw a really lovely doctor and she actually treated me as a whole person and accepted that my other conditions would affect me as a whole. It was so nice to be taken seriously instead of just being ignored or spoken to like I was stupid.
It can be so easy to feel intimidated by the medical profession, and I have at times! As I've got older, I worry less about making a fool of myself though and more about putting my health first.
Couldn't agree more, I have been in your situation, our health is very important, we cannot afford to be bullied into something we know is so wrong.. .....and yes, as I've got older I'm more calmer, but direct!.....with everyone!
I agree with you 100%. I also think that being able to use this amazing group makes you realise that you’re not the only one going through this and that in itself gives you the strength to stand up for yourself.
I definitely would have had neither the knowledge nor confidence to make sensible, informed decisions without this forum and all the people like yourself who educate us accurately where the medical professionals fail to!I know I have to be one step ahead and so I'm very keen to learn.
Of course I don't know everything there is to know, but I feel confident enough now to voice my opinions regarding my own individual needs. If anything new crops up that I need to know then I can ask for help here again.
I’m so pleased that you’ve been able to have a real conversation with a doctor who is open to discussion and who respects the notion of patients knowing their own bodies. I’m sure your post will encourage others who are hesitant to speak out to question decisions that they don’t feel are right for them. Well done! 🌻
well done! My pmr has gone but now have lymphadema- a forgotten condition no cure and controlled by massage and drainage and ice- no pain meds!
At med school in uk apparantly little is told about it so most drs have little knowledge.
Went to a vascular man as my legs were still a problem swollen and hurt. He did tests and said veins and arteries good and didn’t think lymph was a problem.
Referred to a leg feet and ankle man. Saw me said loose weight. Ordered MRI
2nd visit said bones all good think it’s a lymph prob and referred me to a herbalist!
When I then said via email herbalist no good said gp said come off omeprazole which gastric man hasp said be on for life- have hiatus hernia 3 x iron infusions…….I switched off.
Then this surgeon said I know little about lymphadema.
Didn’t refer me ….his secretary said he doesn’t refer!
Insurance co said without a referral we can do nothing. My husband wrote to first vascular guy and yesterday he replied- within days- I have a lymph knowledge- insurance co had said no one on their list was a lymph specialist. MRI is not the tool for diagnosis- it’s a injection via toes into foot to visualise lymph……..
Insurance co now have his letter and are reconsidering….
I have this condition diagnosed following the dye toe injections. I am under the lymphodema team mostly specialist nursing team and wear compression garments on my legs.
My missus has had Lymphoedema in her legs since before I met her (over 40 years ago). She got it in her left leg first, but as time went on it spread to her right leg as well.
She told me that when she first suffered from it at age 23, after a bout of cellulitis in her left foot, she asked the doctor what it was, and he told her there was nothing wrong with her! So she looked down at her very swollen left leg and ankle, and then asked him again, but he still kept insisting that there was nothing wrong with her leg.
Eventually she went to a library and went through all the medical books she could find (no internet in those days!) till she found out about what could cause the swelling in her lower leg. Armed with this leg knowledge (sorry about the pun) the next time she saw the doctor she told him she now knew what it was, Lymphoedema. He then asked her where she found out, and she told him she'd looked it up. At this point he asked her what the treatment was, and she replied that there was no treatment or cure. So then he said that there was no point in her knowing what it was if it couldn't be cured!!! Grrrrrrrrrr!!!!!
Cheeky bastard! If I'd been with her I'd have clocked him one for being so nasty. But that was before I met her, and in the late 1970's, and things have moved on a little since then, if not much. Nowadays doctors will at least admit that they don't always know everything, and will tell you what's wrong with you, even if they can't fix it.
Wow. That's ludicrous. So sorry for what you're going through. Hang in. It will sort out. My situation was similar and now I have a "team". Self advocacy is so key in dealing with today's medicare systems.
Good for you !! i have to say until i started having to see them , i found them them to be all you stated ! In all my time being ill i have yet to see a good one , like you i put in a complaint. I have to say i think the NHS staff are fantastic but these people are a breed of there own , fingers crossed our paths wont have to cross for a long time . So glad you got your voice heard well done .
Good for you. I had the same issue & I’ve changed hospital. But now have to wait another year, 2 years, to see anybody! It’s not about PMR, though, I’m liaising with my GP for planning etc. it has a benefit as he knows what else is going on, medically, & doesn’t set unrealistic goals (like tapering 1mg per month to get down from 5mg to 0 in 5 months).
Glad you had a good experience. In the USA there is a new trend of drs “firing” patients that complain &/or drs’ suing patients for defamation who post bad reviews on their websites.
Glad for your fortuitous outcome and self advocacy. As an aside, it may be worth considering a second brief letter, mentioning that you are not just attentive to subpar service but also to above par as your last contact was. Not that anyone else keeps score but acknowledgig your last good doctor visit may benefit the good doctor who it would be nice to have in some position such as quality control.
I no longer hesitate to voice my opinions when dissatisfied or unhappy with a situation, so I feel its only fair and appropriate to voice my satisfaction and praise when I feel a job has been well done.
A letter of appreciation and thanks is on its way.
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