"Friends, colleagues, distinguished professors and lowly registrars. Thank you for attending this conference to hear the changes we propose for the relationship between you and your patients with complex systemic auto-immune disorders such as lupus.
From now on, the traditional roles are to be reversed.
- patients will be writing and holding all their own clinical notes.
- all reports and assessments will be sent directly to them.
- should you wish to see any reports or assessment before an appointment, you can submit a written request to the patient - although they may withold some of the notes from you if they think it might be in your or their best interests, or if it is inconvenient for them.
- it will also be up to the patient to decide whether you get to see copies of any other correspondence related to the case.
- you will, however, be responsible for ensuring that any information that is held in other clinical locations (for example at the GP practice or other specialism) is kept together and to coordinate communication between these services
- you will also be required to experience any investigation and to take any medication you advise for the patient [uneasy mutterings] Oh - don't worry, you can always stop if you experience any adverse effects
The only thing that will remain unchanged is that whilst you will be professionally responsible for the consequences of any clinical advice you give, the patient still gets to live with the consequences of any treatment for the rest of their life.
I will take questions in a moment, but just to anticipate the obvious one - "How can we possibly be expected to make good, thought-through, approriate decisions under those conditions?", my answer is "This is how your patients currently have to take those same deicsions. So surely you can't consider them unreasonable....?"
Thank you."
Written by
whisperit
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I don't know about all of the international rheumatology conferences, but EULAR certainly does include patient representatives giving talks and participating in Q&A sessions. Yvonne (Vice Chair/Trustee) has often been involved in these sessions in the past along with other representatives from LUPUS EUROPE.
Mike it’s fabulous and I think you should seriously consider submitting it as a EULAR abstract for their Abstracts poster competition/ exhibition. There is prize money for the winner and free 4⭐️ accommodation as I recall.
Also if you would be interested then I’d be happy to work with you on the illustration/ artwork side of things (I have a milligan/ shriggley/ Dr Seuss style)?
And if this submission was successful then I’d take up the free entry to the congress as your carer and happily wheel you about - providing there was a little shelf on the back so I could scoot and go “wheeee” every time we came to a long corridor full of awe struck rheumies?
Would they accept a performance art submission do you think? We could just bring whatever symptom we were feeling on the day - maybe the delegates would appreciate the sensation of pins and needles (supplied by us) in their eyeballs, or having someone knocking their legs out from under them at unexpected moments over the buffet lunch...? x
And I’d be doubly up for a performance if I knew that some neurologists were attending too. Then we could put their names down for lumbar punctures and diagnose them with functional neurological disorder (FND) while requesting that they skinny dip in a site specific pond with all manner of pond life and insects to snuggle up to? X
I think laughing in the face of adversity is very important! Although I wonder if neurologists would classify this type of laughter as having an organic or functional cause??! 😱😂 x
This is so clever Whisperit and true!. I love it ! I hope you do get an award for this !. . I've often thought ( particularly when due to see my Rheumy which is tomorrow) they don't have a clue what it's like being us patients and what we have to endure!. Do hope your not having too bad a time!. X
WOW what treat to read this after taking written exams all day, i have the biggest smile 😃😃 ta. Great viewpoint and very much how and maybe all of us are feeling....ML👏👏👏👏
Hard to say...i am trying to not think what i could have written & switch to mindless iPlayer in a minute. I used every second i had,. They gave allowances for my 'disabilities ' as suggested by Disability Wales thank goodness more time for my to engage & remember & I got to type it which was fab as I most?y type & not write... Thanks for asking.... Fingers crossed, part I I is an oral interview by 4-5 specialist s & a portfolio presentation, which i need to finish assuming I pass yaaaah 😲 😵 . ML
Louise many thanks for that info its our (Wendy & my health board!!!) Failing us all.. Wonder if she would sign Wendy's petition? What hope do we have if cancer care is bad? Oh me, oh my....ml
Yes definitely, so much knowledge and support for each other. We might not be the strongest or fittest army but definitely the most resilient AND it’s so fantastic that everyone looks out for each other and cares through all the ups and downs of our respective disease paths x
I just saw a report about the American meetings saying lupus patients claim they have more flares and many different symptoms than their rheumatologists know about. Surprise!
Exactly! I was discussing this very thing earlier today - the way our rheumys are unaware of how much self-management we have to do in between appointments. That experience is invisible to them, and it may be partly why they underestimate how much insight and understanding we bring to our own management. x
They do indeed underestimate. The difficulty for the patient is working out which one thoroughly appreciates this and wants to know, and which may feel undermined or threatened by it. Takes all sorts, but if I were a medic I'd be happier when patients feel completely comfortable in expressing what they understand and how they deal with life outside the 10 min slot available. At the very least, it gives both a chance of making best use of the 10 mins.
Could not have put it better myself! Yes, you have made the point(s) we all feel at the hands of so-called professionals. They really don't seem to know a great deal.
One has to experience the problems/disabilities/the fear, etc. to understand. For doctors it's only handbook theory, they have NO idea of the devastation, loneliness and abandonment one finds oneself in.
Sending you compassion, positive vibes, and a very friendly hug, and best wishes for better days.
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are you having a bad day? like the bit about our notes and them trying the medication.
but thanks x
The darker side of lupus #9
Letter to my MP re Hydroxychloroquine
