WEBVTT 00:00:00.000 --> 00:00:05.836 Patient-Professional Partnership at EX-Center in Stockholm, a joint ownership between Bräcke diakoni and the Swedish Thalidomide Society. 00:00:06.017 --> 00:00:08.101 The Swedish Thalidomide Society was founded in 1962 by our parents 00:00:08.101 --> 00:00:12.503 Marie Wikström Care Coordinator, EX-Center 00:00:12.503 --> 00:00:15.794 They fought so we could attend mainstream schools... 00:00:16.070 --> 00:00:20.948 ...and when we became adults, we wanted to decide about our own futures. 00:00:22.179 --> 00:00:29.979 We started the EX-Center because we wanted to decide how our health care would work... 00:00:31.671 --> 00:00:36.728 ...not just for people with Thalidomide injuries, but for all people with limb differences. 00:00:36.728 --> 00:00:39.326 Christina Ragnö, Clinical Director, Lic. Occupational Therapist 00:00:39.588 --> 00:00:44.088 We work as a multi-disciplinary team... 00:00:44.195 --> 00:00:51.896 with physical and occupational therapists, prosthetists, orthotists, psychologists and counselors. 00:00:51.896 --> 00:00:55.887 Marie is our care coordinator. 00:00:56.657 --> 00:01:03.466 I'm usually the first person a patient talks to. 00:01:05.497 --> 00:01:13.320 Eventually they meet the entire team, everyone from the orthopedist to the psychologist. 00:01:15.290 --> 00:01:23.820 My role is to coordinate the team and all the logistics of the patient visit. 00:01:25.097 --> 00:01:34.213 Our patients' ages can be anywhere from newborns to the elderly. 00:01:37.337 --> 00:01:46.790 By role model, we mean someone who has had a similar experience... 00:01:46.790 --> 00:01:49.977 ...and a similar disability. 00:01:49.977 --> 00:01:57.039 The purpose of the role model is to help create a vision... 00:01:57.039 --> 00:02:05.373 for example, they can show a child and their parents all the possibilities in life. 00:02:05.373 --> 00:02:13.289 Role models are brought in as needed. 00:02:13.289 --> 00:02:18.707 Sometimes we bring in three and you meet one a day. 00:02:18.707 --> 00:02:24.300 The EX-Center simply wouldn't work without the Role Model Program. 00:02:24.592 --> 00:02:28.826 It's the spirit of the clinic... working together as a team. 00:02:28.933 --> 00:02:36.184 The patient, the patient organization, and professionals. 00:02:36.815 --> 00:02:42.657 We professionals only do a small part of what the EX-Center has to offer. 00:02:42.657 --> 00:02:45.896 This is about doing things together. 00:02:45.896 --> 00:02:53.290 The role models are also people who can instruct... 00:02:53.290 --> 00:03:02.290 For a child learning to dress themselves, the role model shows them how they do it. 00:03:06.059 --> 00:03:11.415 It's not me, the occupational therapist, giving instructions. It's other patients. 00:03:11.415 --> 00:03:17.540 It's someone to look up to who says, "This is how I do it." 00:03:17.540 --> 00:03:32.817 The role model and I offer lots of ideas, but the patient decides their own method. 00:03:32.817 --> 00:03:44.777 We want to spark the patient's own creativity, to see possibilities, not obstacles. 00:03:44.777 --> 00:03:53.707 My name is Carina Essberg and I have differences on all four limbs. 00:03:53.707 --> 00:03:59.546 I use prosthetics for my legs, not much for my hands... 00:04:01.578 --> 00:04:08.816 ...but I have other assistive devices for eating, which I show. 00:04:08.816 --> 00:04:18.528 ...and devices for working out, and swimming, which I can show. 00:04:19.989 --> 00:04:27.672 I have a license, so I can show how I drive. 00:04:28.365 --> 00:04:40.667 I can show how you can swim any stroke, even if you're missing a leg. 00:04:41.667 --> 00:04:49.342 I became an instructor, and have taught kids at my own swim school. 00:04:50.358 --> 00:04:55.362 The kids think it's fun to learn from someone who is like them. 00:04:56.116 --> 00:05:04.344 We don't invite just anyone to be a role model. 00:05:04.621 --> 00:05:11.917 We think a lot about who we select, so that we're almost certain it'll be a good match. 00:05:11.917 --> 00:05:23.271 Personal chemistry too...it's not easy to meet a stranger and be vulnerable. 00:05:24.333 --> 00:05:33.234 The EX-Center doesn't just offer rehabilitation... 00:05:33.588 --> 00:05:39.172 We also gather and disseminate information. 00:05:39.525 --> 00:05:48.637 We have built an on-line database-- our "TipBase" 00:05:48.637 --> 00:05:57.665 filled with advice, tips, products adaptations, assistive technology. 00:05:57.665 --> 00:06:06.117 Working with a patient organization hasn't been problem-free... 00:06:06.117 --> 00:06:13.316 We come from different worlds but that's also the point... 00:06:13.316 --> 00:06:24.480 My expertise as a professional comes from being together with our patients 00:06:24.480 --> 00:06:29.433 ...to see them in their daily lives. 00:06:29.433 --> 00:06:36.881 When we travel internationally to talk about our clinic, I've noticed that some professionals 00:06:36.881 --> 00:06:45.253 don't want daily contact with patients, they want to distance themselves... 00:06:45.253 --> 00:06:47.131 ...but for us it's the opposite. 00:06:47.131 --> 00:06:53.965 We have to be close...because everything I know, I've learned from them. 00:06:55.226 --> 00:07:04.071 In order to work this closely with patients, professionals have to first admit 00:07:04.071 --> 00:07:10.988 that their patients have knowledge that they don't, 00:07:10.988 --> 00:07:15.490 ...and then we have to accept that we don't make the decisions. 00:07:15.490 --> 00:07:23.503 We're not the recipients of care, either. The patients should have authority. 00:07:24.519 --> 00:07:31.234 It can be hard for professionals to let go of the idea that they are the experts. 00:07:31.573 --> 00:07:37.166 We also have meetings for patients. 00:07:39.416 --> 00:07:56.413 We have lectures,we share experiences, do group work around a topic 00:08:03.001 --> 00:08:11.692 It's a form of training and of modelling as well. 00:08:11.692 --> 00:08:19.553 I met a patient who was not originally from Sweden. Her parents came too... 00:08:22.822 --> 00:08:31.964 ...and she wondered what career path she should choose. 00:08:31.964 --> 00:08:36.656 I told her she could be anything she wanted. 00:08:36.656 --> 00:08:46.239 The choice should be based on her dreams, not her disability. 00:08:46.239 --> 00:08:54.542 And she was really glad to hear that. She was only 14 years old. 00:08:56.204 --> 00:08:59.336 She's a lawyer today. 00:08:59.859 --> 00:09:07.504 I'm convinced that the Role Model program makes it possible for the care team 00:09:07.812 --> 00:09:19.033 to provide better service and helped them become better listeners. 00:09:19.033 --> 00:09:27.033 It's helped them hear what matters to patients...and their ideas. 00:09:27.033 --> 00:09:38.409 Many thanks to Marie, Christina and Carina for sharing their experiences at the EX-Center.