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