A couple of months ago, our local teaching hospital was asking for patients with long-term conditions to volunteer to share their experiences with medical students/be available to be examined by medical students. All supervised, of course.
I volunteered, as I saw it as an exciting opportunity to help educate our future doctors. Today, I had a call from the health educators, asking me to go next week to meet 3rd year students. I may be examined, or just have my history taken. I've been told to expect to be there a couple of hours.
I'm very excited, as I see this as being an opportunity to talk to medical students about Sjogren's, and about how the disparate symptoms meant I waited at least 30 years for a diagnosis. I'm also considering taking some brief information about SJS to leave with them, although I'm not sure exactly what at the moment.
Any ideas - remember, it's got to be brief. Over to you
Kathyx
Kathy, thats great! Fame at last?
Take a long list of all the symptoms that we present with on the site, ask the students if they have any ideas on what the symptoms can be from....bet not one will be able to get the answer SS!
Seriously tho' treat it as a visit to your own Doctors. Go for it girl!
Hopefully more hospitals in the UK will follow soon with this idea.
Good Luck,, Cant wait for your report, Dolly x
Kathyx - how exciting . . . our own little guinea pig . . . . I mean Sjogren's, in-the-flesh, specimen . . . I mean someone who can represent all of us!! ;D
If you go to the Sjogren's Foundation website, there is something there you can print out (as a flyer) to hand to the student doctors-in-training that tells about Sjogren's.
Good Luck . . . let us know how it goes.
Bucky
That sounds great. We all do want to hear about your experience.
susanep :)
Howdy miss Katy, You have a great opportunity. If I had one point I would bring up. I would say listen to your patients. Just because you can't find an immediate answer to their problems, does not mean it's all in their head.
Seeker
Katy,
Contact Kathy Ivory at the Sjogren's Foundation and she if she can send you some information to pass out.
Good for you!!
SjoDry
I did something similar last year. I was asked my one of my doctors at Johns Hopkins to speak in front of almost 200 med students and field their questions. It was quite an honor to 'give back' in a way and help these students understand some of our symptoms and the struggle to get diagnosed. Several of them even came up afterward to continue conversation and personally thank me for my time and presentation.
I'm glad you chose to do this...your little bit of time may actually make an impact on a new doctor.
I made an outline (in timeline format) of my symptoms and testing...I found it to be very helpful to keep things in order and somewhat organized for presentation.
Please tell them sjogrens IS not just dry eyes and mouth but so much more. We are very sick and complicated people....vasculits, Cns problems,lung problems, Gi problems. We are not hypochodriacs seeking out pain pills and anti-depressants but answers. We are people with families who love us. CK
Keep us posted. I would like to find a program in Michigan.
Duchess
Thanks everyone!
I'm in the UK, so will probably use a flyer from the British Sjogren's Syndrome Association. It's quite brief, and tells it as it is
Anita, it's not as grand as a 200 person seminar. In fact, I'm not too sure what will be involved. But for my first visit, I think it will probably be more of a history taking and examination. Maybe, in the future, I will get the opportnity to address more students - and possibly more qualified than 3rd year students.
I will definitely let you know how it goes.
Kathyx
Kathyx - if you get more of an opportunity to talk to these med students, maybe you could make a copy of the Spoon Theory to give them, or at least explain to them about your spoon allotment for the day and the different tasks that use up your spoons a lot faster than a "normal" person.
Bucky
Brilliant ikdea, Mrs BUckty
Will print one off, and have it with me,just ibn case Iget the opportunity.
Kathyx
Hi kathy :)
Well done you! I would like you to tell them how many people get fobbed off as hypochondriacs and how awful it feels to be patronised when you just KNOW you are not imagining things. The spoon theory sounds like a good idea too!
Good luck! Take care - Scottie :)
Thanks Scottie - that's certainly a priority. And, even if I don't get chance to do everything this time, I'll do my best if I get asked again. We have to make the very best of these opportunities, don't we?
Kathyx
:) You are our hero.. go educate them and thanks. CK
Kathyx,
Congratulations on being asked to speak. I don't know how soon you're scheduled to speak, but I have an information packet put together by the Sjogren's Foundation to be handed out to doctor's offices here in the States as part of the Sjogren's Ambassadors program. Ambassadors are Sjogren's patients who are willing to take information into the offices in their area and Kathy Ivory is the person who oversees the program. I'd be happy to send you one of the packets. You can email me by clicking on the email icon in my profile if you're interested.
Good Luck with your talk!
Tracy
That's a very kind offer, KT, but I'm going in on Wednesday, and I'm in the UK. I've got some information for them now, and hopefully, will get more opportunities in the future.
Hugs
Kathyx
Hi
Sorry to have taken so long to get back to tell you about the session - my laptop screen got broken, so I've been waiting for a replacement.
The session lasted about two hours in all, and consisted of 6 groups of students coming into a consulting room, in turn, and asking about my respiratory symptoms. They were 3rd year medical students and were being supervised by fifth years.
It felt a bit daunting at first, and even more so when I realized they were doing mock exams. However, once I got the gist of it, I quite enjoyed being an 'expert patient'. They were interested in my brochiectasis and asthma.
Although I didn't get a lot of chance to mention Sjogren's, two fifth years, who are currently doing a 'boring' rheumatology placement, were very intersted in my Sjogren's information, and were delighted to take it away with them. I briefly mentioned fibrosis being linked to Sjogrens. Apparently, they are having their year end exams in April so hopefully, I will be asked to go back in then. If I do, I'll keep you posted.
Kathyx
Katybarstool,
Good job. So glad you were able to do it! I too had Bronchiectasis & had 2/3 of my r.lung removed for it.
I am now convinced that all of my childhood medical issues are connected to what I am living with now.
I hope you will be invited back.
SjoDry
one Kathy!! :)
Quote from: Katybarstool on January 30, 2013, 12:41:02 PM
However, once I got the gist of it, I quite enjoyed being an 'expert patient'.
Although I didn't get a lot of chance to mention Sjogren's, two fifth years, who are currently doing a 'boring' rheumatology placement, were very intersted in my Sjogren's information, and were delighted to take it away with them.
Good job, Kathyx! Sounds like the students got some information from talking to their 'expert patient', and you got to pass along some Sjogren's information too. :)
I hope you do get an invite back.
Bucky