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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[br]was founded in 1962 by our parents

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Marie Wikström[br]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[br]to decide about our own futures.

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We started the EX-Center because we wanted to [br]decide how our health care would work...

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...not just for people with Thalidomide injuries,[br]but for all people with limb differences.

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Christina Ragnö, [br]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, [br]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,[br]everyone from the orthopedist to the psychologist.

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My role is to coordinate the team and[br]all the logistics of the patient visit.

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Our patients' ages can be anywhere [br]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 [br]create a vision...

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for example, they can show a child and their parents[br]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[br]and you meet one a day.

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The EX-Center simply wouldn't work[br]without the Role Model Program.

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It's the spirit of the clinic...[br]working together as a team.

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The patient, the patient organization,[br]and professionals.

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We professionals only do a small part[br]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[br]who can instruct...

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For a child learning to dress themselves,[br]the role model shows them how they do it.

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It's not me, the occupational therapist,[br]giving instructions. It's other patients.

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It's someone to look up to who says, [br]"This is how I do it."

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The role model and I offer lots of ideas,[br]but the patient decides their own method.

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We want to spark the patient's own creativity, [br]to see possibilities, not obstacles.

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My name is Carina Essberg and I have differences[br]on all four limbs.

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I use prosthetics for my legs,[br]not much for my hands...

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...but I have other assistive devices for [br]eating, which I show.

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...and devices for working out, [br]and swimming, which I can show.

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I have a license, [br]so I can show how I drive.

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I can show how you can swim any stroke,[br]even if you're missing a leg.

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I became an instructor, and[br]have taught kids at my own swim school.

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The kids think it's fun to learn[br]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,[br]so that we're almost certain it'll be a good match.

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Personal chemistry too...it's not easy[br]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[br]information.

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We have built an on-line database--[br]our "TipBase"

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filled with advice, tips, products[br]adaptations, assistive technology.

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Working with a patient organization[br]hasn't been problem-free...

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We come from different worlds[br]but that's also the point...

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My expertise as a professional comes from[br]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[br]our clinic, I've noticed that some professionals

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don't want daily contact with patients, [br]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,[br]I've learned from them.

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In order to work this closely with patients,[br]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 [br]we don't make the decisions.

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We're not the recipients of care, either.[br]The patients should have authority.

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It can be hard for professionals to let go[br]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 [br]from Sweden. Her parents came too...

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...and she wondered what career path[br]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,[br]not her disability.

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And she was really glad to hear that.[br]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[br]makes it possible for the care team

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to provide better service [br]and helped them become better listeners.

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It's helped them hear what matters[br]to patients...and their ideas.

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Many thanks to Marie, Christina and Carina[br]for sharing their experiences at the EX-Center.