[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:00.00,0:00:05.84,Default,,0000,0000,0000,,Patient-Professional Partnership at EX-Center in Stockholm, a joint ownership between Bräcke diakoni and the Swedish Thalidomide Society.
Dialogue: 0,0:00:06.02,0:00:08.10,Default,,0000,0000,0000,,The Swedish Thalidomide Society\Nwas founded in 1962 by our parents
Dialogue: 0,0:00:08.10,0:00:12.50,Default,,0000,0000,0000,,Marie Wikström\NCare Coordinator, EX-Center
Dialogue: 0,0:00:12.50,0:00:15.79,Default,,0000,0000,0000,,They fought so we could attend mainstream schools...
Dialogue: 0,0:00:16.07,0:00:20.95,Default,,0000,0000,0000,,...and when we became adults, we wanted\Nto decide about our own futures.
Dialogue: 0,0:00:22.18,0:00:29.98,Default,,0000,0000,0000,,We started the EX-Center because we wanted to \Ndecide how our health care would work...
Dialogue: 0,0:00:31.67,0:00:36.73,Default,,0000,0000,0000,,...not just for people with Thalidomide injuries,\Nbut for all people with limb differences.
Dialogue: 0,0:00:36.73,0:00:39.33,Default,,0000,0000,0000,,Christina Ragnö, \NClinical Director, Lic. Occupational Therapist
Dialogue: 0,0:00:39.59,0:00:44.09,Default,,0000,0000,0000,,We work as a multi-disciplinary team...
Dialogue: 0,0:00:44.20,0:00:51.90,Default,,0000,0000,0000,,with physical and occupational therapists, \Nprosthetists, orthotists, psychologists and counselors.
Dialogue: 0,0:00:51.90,0:00:55.89,Default,,0000,0000,0000,,Marie is our care coordinator.
Dialogue: 0,0:00:56.66,0:01:03.47,Default,,0000,0000,0000,,I'm usually the first person a patient talks to.
Dialogue: 0,0:01:05.50,0:01:13.32,Default,,0000,0000,0000,,Eventually they meet the entire team,\Neveryone from the orthopedist to the psychologist.
Dialogue: 0,0:01:15.29,0:01:23.82,Default,,0000,0000,0000,,My role is to coordinate the team and\Nall the logistics of the patient visit.
Dialogue: 0,0:01:25.10,0:01:34.21,Default,,0000,0000,0000,,Our patients' ages can be anywhere \Nfrom newborns to the elderly.
Dialogue: 0,0:01:37.34,0:01:46.79,Default,,0000,0000,0000,,By role model, we mean someone who has had a similar experience...
Dialogue: 0,0:01:46.79,0:01:49.98,Default,,0000,0000,0000,,...and a similar disability.
Dialogue: 0,0:01:49.98,0:01:57.04,Default,,0000,0000,0000,,The purpose of the role model is to help \Ncreate a vision...
Dialogue: 0,0:01:57.04,0:02:05.37,Default,,0000,0000,0000,,for example, they can show a child and their parents\Nall the possibilities in life.
Dialogue: 0,0:02:05.37,0:02:13.29,Default,,0000,0000,0000,,Role models are brought in as needed.
Dialogue: 0,0:02:13.29,0:02:18.71,Default,,0000,0000,0000,,Sometimes we bring in three\Nand you meet one a day.
Dialogue: 0,0:02:18.71,0:02:24.30,Default,,0000,0000,0000,,The EX-Center simply wouldn't work\Nwithout the Role Model Program.
Dialogue: 0,0:02:24.59,0:02:28.83,Default,,0000,0000,0000,,It's the spirit of the clinic...\Nworking together as a team.
Dialogue: 0,0:02:28.93,0:02:36.18,Default,,0000,0000,0000,,The patient, the patient organization,\Nand professionals.
Dialogue: 0,0:02:36.82,0:02:42.66,Default,,0000,0000,0000,,We professionals only do a small part\Nof what the EX-Center has to offer.
Dialogue: 0,0:02:42.66,0:02:45.90,Default,,0000,0000,0000,,This is about doing things together.
Dialogue: 0,0:02:45.90,0:02:53.29,Default,,0000,0000,0000,,The role models are also people\Nwho can instruct...
Dialogue: 0,0:02:53.29,0:03:02.29,Default,,0000,0000,0000,,For a child learning to dress themselves,\Nthe role model shows them how they do it.
Dialogue: 0,0:03:06.06,0:03:11.42,Default,,0000,0000,0000,,It's not me, the occupational therapist,\Ngiving instructions. It's other patients.
Dialogue: 0,0:03:11.42,0:03:17.54,Default,,0000,0000,0000,,It's someone to look up to who says, \N"This is how I do it."
Dialogue: 0,0:03:17.54,0:03:32.82,Default,,0000,0000,0000,,The role model and I offer lots of ideas,\Nbut the patient decides their own method.
Dialogue: 0,0:03:32.82,0:03:44.78,Default,,0000,0000,0000,,We want to spark the patient's own creativity, \Nto see possibilities, not obstacles.
Dialogue: 0,0:03:44.78,0:03:53.71,Default,,0000,0000,0000,,My name is Carina Essberg and I have differences\Non all four limbs.
Dialogue: 0,0:03:53.71,0:03:59.55,Default,,0000,0000,0000,,I use prosthetics for my legs,\Nnot much for my hands...
Dialogue: 0,0:04:01.58,0:04:08.82,Default,,0000,0000,0000,,...but I have other assistive devices for \Neating, which I show.
Dialogue: 0,0:04:08.82,0:04:18.53,Default,,0000,0000,0000,,...and devices for working out, \Nand swimming, which I can show.
Dialogue: 0,0:04:19.99,0:04:27.67,Default,,0000,0000,0000,,I have a license, \Nso I can show how I drive.
Dialogue: 0,0:04:28.36,0:04:40.67,Default,,0000,0000,0000,,I can show how you can swim any stroke,\Neven if you're missing a leg.
Dialogue: 0,0:04:41.67,0:04:49.34,Default,,0000,0000,0000,,I became an instructor, and\Nhave taught kids at my own swim school.
Dialogue: 0,0:04:50.36,0:04:55.36,Default,,0000,0000,0000,,The kids think it's fun to learn\Nfrom someone who is like them.
Dialogue: 0,0:04:56.12,0:05:04.34,Default,,0000,0000,0000,,We don't invite just anyone to be a role model.
Dialogue: 0,0:05:04.62,0:05:11.92,Default,,0000,0000,0000,,We think a lot about who we select,\Nso that we're almost certain it'll be a good match.
Dialogue: 0,0:05:11.92,0:05:23.27,Default,,0000,0000,0000,,Personal chemistry too...it's not easy\Nto meet a stranger and be vulnerable.
Dialogue: 0,0:05:24.33,0:05:33.23,Default,,0000,0000,0000,,The EX-Center doesn't just offer rehabilitation...
Dialogue: 0,0:05:33.59,0:05:39.17,Default,,0000,0000,0000,,We also gather and disseminate\Ninformation.
Dialogue: 0,0:05:39.52,0:05:48.64,Default,,0000,0000,0000,,We have built an on-line database--\Nour "TipBase"
Dialogue: 0,0:05:48.64,0:05:57.66,Default,,0000,0000,0000,,filled with advice, tips, products\Nadaptations, assistive technology.
Dialogue: 0,0:05:57.66,0:06:06.12,Default,,0000,0000,0000,,Working with a patient organization\Nhasn't been problem-free...
Dialogue: 0,0:06:06.12,0:06:13.32,Default,,0000,0000,0000,,We come from different worlds\Nbut that's also the point...
Dialogue: 0,0:06:13.32,0:06:24.48,Default,,0000,0000,0000,,My expertise as a professional comes from\Nbeing together with our patients
Dialogue: 0,0:06:24.48,0:06:29.43,Default,,0000,0000,0000,,...to see them in their daily lives.
Dialogue: 0,0:06:29.43,0:06:36.88,Default,,0000,0000,0000,,When we travel internationally to talk about\Nour clinic, I've noticed that some professionals
Dialogue: 0,0:06:36.88,0:06:45.25,Default,,0000,0000,0000,,don't want daily contact with patients, \Nthey want to distance themselves...
Dialogue: 0,0:06:45.25,0:06:47.13,Default,,0000,0000,0000,,...but for us it's the opposite.
Dialogue: 0,0:06:47.13,0:06:53.96,Default,,0000,0000,0000,,We have to be close...because everything I know,\NI've learned from them.
Dialogue: 0,0:06:55.23,0:07:04.07,Default,,0000,0000,0000,,In order to work this closely with patients,\Nprofessionals have to first admit
Dialogue: 0,0:07:04.07,0:07:10.99,Default,,0000,0000,0000,,that their patients have knowledge that they don't,
Dialogue: 0,0:07:10.99,0:07:15.49,Default,,0000,0000,0000,,...and then we have to accept that \Nwe don't make the decisions.
Dialogue: 0,0:07:15.49,0:07:23.50,Default,,0000,0000,0000,,We're not the recipients of care, either.\NThe patients should have authority.
Dialogue: 0,0:07:24.52,0:07:31.23,Default,,0000,0000,0000,,It can be hard for professionals to let go\Nof the idea that they are the experts.
Dialogue: 0,0:07:31.57,0:07:37.17,Default,,0000,0000,0000,,We also have meetings for patients.
Dialogue: 0,0:07:39.42,0:07:56.41,Default,,0000,0000,0000,,We have lectures,we share experiences, do group work around a topic
Dialogue: 0,0:08:03.00,0:08:11.69,Default,,0000,0000,0000,,It's a form of training and of modelling as well.
Dialogue: 0,0:08:11.69,0:08:19.55,Default,,0000,0000,0000,,I met a patient who was not originally \Nfrom Sweden. Her parents came too...
Dialogue: 0,0:08:22.82,0:08:31.96,Default,,0000,0000,0000,,...and she wondered what career path\Nshe should choose.
Dialogue: 0,0:08:31.96,0:08:36.66,Default,,0000,0000,0000,,I told her she could be anything she wanted.
Dialogue: 0,0:08:36.66,0:08:46.24,Default,,0000,0000,0000,,The choice should be based on her dreams,\Nnot her disability.
Dialogue: 0,0:08:46.24,0:08:54.54,Default,,0000,0000,0000,,And she was really glad to hear that.\NShe was only 14 years old.
Dialogue: 0,0:08:56.20,0:08:59.34,Default,,0000,0000,0000,,She's a lawyer today.
Dialogue: 0,0:08:59.86,0:09:07.50,Default,,0000,0000,0000,,I'm convinced that the Role Model program\Nmakes it possible for the care team
Dialogue: 0,0:09:07.81,0:09:19.03,Default,,0000,0000,0000,,to provide better service \Nand helped them become better listeners.
Dialogue: 0,0:09:19.03,0:09:27.03,Default,,0000,0000,0000,,It's helped them hear what matters\Nto patients...and their ideas.
Dialogue: 0,0:09:27.03,0:09:38.41,Default,,0000,0000,0000,,Many thanks to Marie, Christina and Carina\Nfor sharing their experiences at the EX-Center.