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