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Patient-Professional Partnership at the EX-Center
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0:00 - 0:06Patient-Professional Partnership at EX-Center in Stockholm, a joint ownership between Bräcke diakoni and the Swedish Thalidomide Society.
-
0:06 - 0:08The Swedish Thalidomide Society
was founded in 1962 by our parents -
0:08 - 0:13Marie Wikström
Care Coordinator, EX-Center -
0:13 - 0:16They fought so we could attend mainstream schools...
-
0:16 - 0:21...and when we became adults, we wanted
to decide about our own futures. -
0:22 - 0:30We started the EX-Center because we wanted to
decide how our health care would work... -
0:32 - 0:37...not just for people with Thalidomide injuries,
but for all people with limb differences. -
0:37 - 0:39Christina Ragnö,
Clinical Director, Lic. Occupational Therapist -
0:40 - 0:44We work as a multi-disciplinary team...
-
0:44 - 0:52with physical and occupational therapists,
prosthetists, orthotists, psychologists and counselors. -
0:52 - 0:56Marie is our care coordinator.
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0:57 - 1:03I'm usually the first person a patient talks to.
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1:05 - 1:13Eventually they meet the entire team,
everyone from the orthopedist to the psychologist. -
1:15 - 1:24My role is to coordinate the team and
all the logistics of the patient visit. -
1:25 - 1:34Our patients' ages can be anywhere
from newborns to the elderly. -
1:37 - 1:47By role model, we mean someone who has had a similar experience...
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1:47 - 1:50...and a similar disability.
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1:50 - 1:57The purpose of the role model is to help
create a vision... -
1:57 - 2:05for example, they can show a child and their parents
all the possibilities in life. -
2:05 - 2:13Role models are brought in as needed.
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2:13 - 2:19Sometimes we bring in three
and you meet one a day. -
2:19 - 2:24The EX-Center simply wouldn't work
without the Role Model Program. -
2:25 - 2:29It's the spirit of the clinic...
working together as a team. -
2:29 - 2:36The patient, the patient organization,
and professionals. -
2:37 - 2:43We professionals only do a small part
of what the EX-Center has to offer. -
2:43 - 2:46This is about doing things together.
-
2:46 - 2:53The role models are also people
who can instruct... -
2:53 - 3:02For a child learning to dress themselves,
the role model shows them how they do it. -
3:06 - 3:11It's not me, the occupational therapist,
giving instructions. It's other patients. -
3:11 - 3:18It's someone to look up to who says,
"This is how I do it." -
3:18 - 3:33The role model and I offer lots of ideas,
but the patient decides their own method. -
3:33 - 3:45We want to spark the patient's own creativity,
to see possibilities, not obstacles. -
3:45 - 3:54My name is Carina Essberg and I have differences
on all four limbs. -
3:54 - 4:00I use prosthetics for my legs,
not much for my hands... -
4:02 - 4:09...but I have other assistive devices for
eating, which I show. -
4:09 - 4:19...and devices for working out,
and swimming, which I can show. -
4:20 - 4:28I have a license,
so I can show how I drive. -
4:28 - 4:41I can show how you can swim any stroke,
even if you're missing a leg. -
4:42 - 4:49I became an instructor, and
have taught kids at my own swim school. -
4:50 - 4:55The kids think it's fun to learn
from someone who is like them. -
4:56 - 5:04We don't invite just anyone to be a role model.
-
5:05 - 5:12We think a lot about who we select,
so that we're almost certain it'll be a good match. -
5:12 - 5:23Personal chemistry too...it's not easy
to meet a stranger and be vulnerable. -
5:24 - 5:33The EX-Center doesn't just offer rehabilitation...
-
5:34 - 5:39We also gather and disseminate
information. -
5:40 - 5:49We have built an on-line database--
our "TipBase" -
5:49 - 5:58filled with advice, tips, products
adaptations, assistive technology. -
5:58 - 6:06Working with a patient organization
hasn't been problem-free... -
6:06 - 6:13We come from different worlds
but that's also the point... -
6:13 - 6:24My expertise as a professional comes from
being together with our patients -
6:24 - 6:29...to see them in their daily lives.
-
6:29 - 6:37When we travel internationally to talk about
our clinic, I've noticed that some professionals -
6:37 - 6:45don't want daily contact with patients,
they want to distance themselves... -
6:45 - 6:47...but for us it's the opposite.
-
6:47 - 6:54We have to be close...because everything I know,
I've learned from them. -
6:55 - 7:04In order to work this closely with patients,
professionals have to first admit -
7:04 - 7:11that their patients have knowledge that they don't,
-
7:11 - 7:15...and then we have to accept that
we don't make the decisions. -
7:15 - 7:24We're not the recipients of care, either.
The patients should have authority. -
7:25 - 7:31It can be hard for professionals to let go
of the idea that they are the experts. -
7:32 - 7:37We also have meetings for patients.
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7:39 - 7:56We have lectures,we share experiences, do group work around a topic
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8:03 - 8:12It's a form of training and of modelling as well.
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8:12 - 8:20I met a patient who was not originally
from Sweden. Her parents came too... -
8:23 - 8:32...and she wondered what career path
she should choose. -
8:32 - 8:37I told her she could be anything she wanted.
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8:37 - 8:46The choice should be based on her dreams,
not her disability. -
8:46 - 8:55And she was really glad to hear that.
She was only 14 years old. -
8:56 - 8:59She's a lawyer today.
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9:00 - 9:08I'm convinced that the Role Model program
makes it possible for the care team -
9:08 - 9:19to provide better service
and helped them become better listeners. -
9:19 - 9:27It's helped them hear what matters
to patients...and their ideas. -
9:27 - 9:38Many thanks to Marie, Christina and Carina
for sharing their experiences at the EX-Center.
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus | ||
excenter edited English subtitles for Brukarmedverkan EX-Center/Röda Korsets Sjukhus |