I've seen the rheumatologist once , a disinterested locum who 'diagnosed' palindromic rheumatism and the specialist nurse twice. In my last phone conversation with her I said I was concerned I wasn't being treated effectively, not along NICE guidance lines etc, particularly as my anti-CCP of 298 indicated I may have a more aggressive disease. Im a MH nurse consultant and my dad's a pharmacist so well able to make sense of research etc and draw my own conclusions. At which point she said "well you've been a busy girl, do you want to put my uniform on!?!" Needless to say I sent off a long complaint letter!
I had a message left yesterday to say my appointment in two weeks with the nurse has been cancelled and I have been given an appointment with the rheumatologist next Tuesday.
All great but of course I'm anxious there'll be retribution and want advice on how to handle what could be an awkward meeting?
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Barb66
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How rude! In my humble opinion, you've done nothing wrong. Draw a line,go along as 'normal' and get things going in the right direction. If nothing else you need an explanation what's exactly going on with your diagnosis etc.
Take a third person with you... sad to say people who want to be antagonistic and rude suddenly become all smiles and professional if there is someone else present.... it's the way of the bully!
The positive take on it is that your letter hit the mark, the nurse has been made aware of how one should deal with patients, your comment about high anti-CCP has been recognised too and you've been bumped up to the consultant so they can apologise and treat you properly....
So try not to fret that this will be awkward but approach the appointment with a positive tone & open mind. Good doctors appreciate patients who are well informed.
And meant to say, push the discussion toward reviewing your meds as that seems to be what's needed for you right now.
You sometimes wonder why some medical professionals get to be in the position they are in dealing direct with patients .
However now you have the appointment things are obviously moving forward and your complaint has been acknowledged.
As Ali_H says take someone along with you,husband,partner whoever and you have witness to how the consultation goes,and also the comment on the bullying tactics comes into play here too - they should be a lot more friendly and sympathetic towards you.You Have asked for help not criticism.
Hope the consultation goes well and you get the answers and help you are looking for.
I wasn't happy with my initial appointment with the Rheumatology Consultant. Not going to go into details on here but he was really unprofessional and I ended up writing a letter of complaint asking to see a different consultant. I never complain about anything, so it was a big decision for me to write the letter. I received a letter back from the Service Manager and the Rheumatology Medical Director apologising profusely for his conduct during my consultation. Like you, I was so nervous about going back again, but it turns out it was the best decision I ever made as I now have an amazing consultant, who diagnosed me really quickly and got me on the right meds which has made a huge difference to me. So don't feel bad, stand your ground. You did the right thing.
My experience has been that articulately expressed, valid letters of complaint, as I'm sure yours was, usually exact more respectful/ professional treatment rather than the opposite.
Certainly this has been the case for me - although I've only made two formal complaints ever - one very general, about my experiences as an inpatient in a hospital I no longer use. I did receive an apology, and if I really had to go back there ever I wouldn't feel any more vulnerable for having put my negative experiences into writing. The complaint was upheld and I received a letter apology via the complaints officer, from a macho surgeon and the ward sister regarding a bullying nurse.
The other one was about a truly horrible and unprofessional GP last year. By the time I became aware of comments she had made about me on my notes, I was already registered elsewhere. So I knew I wouldn't have to see her again in person. But I requested that my letter be copied in on my notes for my new GP practice because it was partly a response to her comments and partly about equally disparaging remarks she had made to my face - and the way these had made me feel.
Subsequent GPs have all been perfectly friendly and helpful. They know that if I have to I won't hesitate to stick up for myself. It helps that I'm always friendly and polite and well informed. No one has been freaked out by my questions or requests since then.
When I had to move on from the next practice for practical reasons, I wrote a letter thanking the GP for trusting me, being kind and referring me on to the right people. Praise where praise is due!
I also wrote a critical letter recently to a rheumy registrar, correcting certain inaccuracies, querying his tone and addressing comments he had made in his letter to me regarding a new immunesuppressant drug I was to start taking. I copied in my GP and neurologist and both consultant rheumatologists he had mentioned and CCd in his own letter to me.
I know my letter of reply hit the spot because he phoned me rather indignantly on the same day! I calmly pointed out to him why I felt he had misrepresented me in relation to treatment options and symptoms and my historic diagnosis of RA. He climbed down and agreed with all my points - even made a small joke at his own expense! He seemed to quite like it that I am well informed and have a good understanding of my own bloods and symptoms having done my research. He referred me on to the connective tissue/ Scleroderma clinic as I had requested.
I then received a very nice letter from my fierce neurologist thanking me for copying her in - agreeing that a multidisciplinary approach was paramount in my case and congratulating me for pushing this forward myself.
Like you, I'm a bit apprehensive about how I will be treated when I finally do meet my new consultant next month. But hey at least they know we're not for messing with?!
Best of luck for Tuesday. My advice would be to go armed with bullet point lists and photos of any synovial swelling, meet their gaze, be friendly but firm. And, if they are any good at all, then your letter of complaint should not present any problems for you.
I want you to stand up straight, take a deep breath and hold your head up high. This awkward meeting is not your problem, it's your medical teams problem.
With pen & paper in hand, ask your questions that you need to have answered. Bring a friend with you as a second set of ears is always best.
I wish you all the best. This is your health, and your life. Of course you have been a busy girl, you want your life back. Chin up, don't allow a fool to bring you down.
Some professionals do feel intimidated by us - we are, after all, the experts on our own disease and should be. The care of a patient with a long term condition should be a partnership between the patient who knows about the condition in a personal way and the professional who knows (or should do) about the condition in a general way with experience of other patients and reading.
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