1 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. 2 00:00:06,017 --> 00:00:08,101 The Swedish Thalidomide Society was founded in 1962 by our parents 3 00:00:08,101 --> 00:00:12,503 Marie Wikström Care Coordinator, EX-Center 4 00:00:12,503 --> 00:00:15,794 They fought so we could attend mainstream schools... 5 00:00:16,070 --> 00:00:20,948 ...and when we became adults, we wanted to decide about our own futures. 6 00:00:22,179 --> 00:00:29,979 We started the EX-Center because we wanted to decide how our health care would work... 7 00:00:31,671 --> 00:00:36,728 ...not just for people with Thalidomide injuries, but for all people with limb differences. 8 00:00:36,728 --> 00:00:39,326 Christina Ragnö, Clinical Director, Lic. Occupational Therapist 9 00:00:39,588 --> 00:00:44,088 We work as a multi-disciplinary team... 10 00:00:44,195 --> 00:00:51,896 with physical and occupational therapists, prosthetists, orthotists, psychologists and counselors. 11 00:00:51,896 --> 00:00:55,887 Marie is our care coordinator. 12 00:00:56,657 --> 00:01:03,466 I'm usually the first person a patient talks to. 13 00:01:05,497 --> 00:01:13,320 Eventually they meet the entire team, everyone from the orthopedist to the psychologist. 14 00:01:15,290 --> 00:01:23,820 My role is to coordinate the team and all the logistics of the patient visit. 15 00:01:25,097 --> 00:01:34,213 Our patients' ages can be anywhere from newborns to the elderly. 16 00:01:37,337 --> 00:01:46,790 By role model, we mean someone who has had a similar experience... 17 00:01:46,790 --> 00:01:49,977 ...and a similar disability. 18 00:01:49,977 --> 00:01:57,039 The purpose of the role model is to help create a vision... 19 00:01:57,039 --> 00:02:05,373 for example, they can show a child and their parents all the possibilities in life. 20 00:02:05,373 --> 00:02:13,289 Role models are brought in as needed. 21 00:02:13,289 --> 00:02:18,707 Sometimes we bring in three and you meet one a day. 22 00:02:18,707 --> 00:02:24,300 The EX-Center simply wouldn't work without the Role Model Program. 23 00:02:24,592 --> 00:02:28,826 It's the spirit of the clinic... working together as a team. 24 00:02:28,933 --> 00:02:36,184 The patient, the patient organization, and professionals. 25 00:02:36,815 --> 00:02:42,657 We professionals only do a small part of what the EX-Center has to offer. 26 00:02:42,657 --> 00:02:45,896 This is about doing things together. 27 00:02:45,896 --> 00:02:53,290 The role models are also people who can instruct... 28 00:02:53,290 --> 00:03:02,290 For a child learning to dress themselves, the role model shows them how they do it. 29 00:03:06,059 --> 00:03:11,415 It's not me, the occupational therapist, giving instructions. It's other patients. 30 00:03:11,415 --> 00:03:17,540 It's someone to look up to who says, "This is how I do it." 31 00:03:17,540 --> 00:03:32,817 The role model and I offer lots of ideas, but the patient decides their own method. 32 00:03:32,817 --> 00:03:44,777 We want to spark the patient's own creativity, to see possibilities, not obstacles. 33 00:03:44,777 --> 00:03:53,707 My name is Carina Essberg and I have differences on all four limbs. 34 00:03:53,707 --> 00:03:59,546 I use prosthetics for my legs, not much for my hands... 35 00:04:01,578 --> 00:04:08,816 ...but I have other assistive devices for eating, which I show. 36 00:04:08,816 --> 00:04:18,528 ...and devices for working out, and swimming, which I can show. 37 00:04:19,989 --> 00:04:27,672 I have a license, so I can show how I drive. 38 00:04:28,365 --> 00:04:40,667 I can show how you can swim any stroke, even if you're missing a leg. 39 00:04:41,667 --> 00:04:49,342 I became an instructor, and have taught kids at my own swim school. 40 00:04:50,358 --> 00:04:55,362 The kids think it's fun to learn from someone who is like them. 41 00:04:56,116 --> 00:05:04,344 We don't invite just anyone to be a role model. 42 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. 43 00:05:11,917 --> 00:05:23,271 Personal chemistry too...it's not easy to meet a stranger and be vulnerable. 44 00:05:24,333 --> 00:05:33,234 The EX-Center doesn't just offer rehabilitation... 45 00:05:33,588 --> 00:05:39,172 We also gather and disseminate information. 46 00:05:39,525 --> 00:05:48,637 We have built an on-line database-- our "TipBase" 47 00:05:48,637 --> 00:05:57,665 filled with advice, tips, products adaptations, assistive technology. 48 00:05:57,665 --> 00:06:06,117 Working with a patient organization hasn't been problem-free... 49 00:06:06,117 --> 00:06:13,316 We come from different worlds but that's also the point... 50 00:06:13,316 --> 00:06:24,480 My expertise as a professional comes from being together with our patients 51 00:06:24,480 --> 00:06:29,433 ...to see them in their daily lives. 52 00:06:29,433 --> 00:06:36,881 When we travel internationally to talk about our clinic, I've noticed that some professionals 53 00:06:36,881 --> 00:06:45,253 don't want daily contact with patients, they want to distance themselves... 54 00:06:45,253 --> 00:06:47,131 ...but for us it's the opposite. 55 00:06:47,131 --> 00:06:53,965 We have to be close...because everything I know, I've learned from them. 56 00:06:55,226 --> 00:07:04,071 In order to work this closely with patients, professionals have to first admit 57 00:07:04,071 --> 00:07:10,988 that their patients have knowledge that they don't, 58 00:07:10,988 --> 00:07:15,490 ...and then we have to accept that we don't make the decisions. 59 00:07:15,490 --> 00:07:23,503 We're not the recipients of care, either. The patients should have authority. 60 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. 61 00:07:31,573 --> 00:07:37,166 We also have meetings for patients. 62 00:07:39,416 --> 00:07:56,413 We have lectures,we share experiences, do group work around a topic 63 00:08:03,001 --> 00:08:11,692 It's a form of training and of modelling as well. 64 00:08:11,692 --> 00:08:19,553 I met a patient who was not originally from Sweden. Her parents came too... 65 00:08:22,822 --> 00:08:31,964 ...and she wondered what career path she should choose. 66 00:08:31,964 --> 00:08:36,656 I told her she could be anything she wanted. 67 00:08:36,656 --> 00:08:46,239 The choice should be based on her dreams, not her disability. 68 00:08:46,239 --> 00:08:54,542 And she was really glad to hear that. She was only 14 years old. 69 00:08:56,204 --> 00:08:59,336 She's a lawyer today. 70 00:08:59,859 --> 00:09:07,504 I'm convinced that the Role Model program makes it possible for the care team 71 00:09:07,812 --> 00:09:19,033 to provide better service and helped them become better listeners. 72 00:09:19,033 --> 00:09:27,033 It's helped them hear what matters to patients...and their ideas. 73 00:09:27,033 --> 00:09:38,409 Many thanks to Marie, Christina and Carina for sharing their experiences at the EX-Center.