SNN July 2018

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THE BAIL BULLETIN HAPPY MIDYEAR GREETINGS FROM ALL OF THE BAIL TEAM! In 2018 the BAIL team had the privilege of meeting with the Hon Carmel Sepuloni (Minister for Social Development and Disability Issues) twice. The first was in April at the Beehive alongside the Hon Iain Lees Galloway, and the second meeting was in May on-site at Burwood Hospital campus. We were able to give Carmel a tour of the Spinal Unit, and talk to her about the work we do at BAIL. It was a great opportunity to highlight our dedication to research based advocacy and reiterate the need to address the inequality for people with a disability on non- ACC funding. In early 2018 BAIL hosted a very successful consumer forum which was attended by a variety of people connected through the experience of living with a disability. The purpose of the forum was to understand what the most important research priorities were for people living with disability, and better understand how to make research more engaging. Based on this forum we have developed a survey asking people to rank the topics they consider should be most prioritised by researchers. We have received great feedback so thank you to everyone who has participated to date. If you would like to complete the survey please visit: https://www.surveymonkey.com/r/ResearchPrioritiesSurvey KNOWLEDGE INTO ACTION Rachelle Martin has recently joined the BAIL team as a Clinical Researcher. Rachelle has just completed her PhD which evaluated the effectiveness of Therapeutic Horseback Riding (THR) for children living with the experience of disability. In summary, findings from the research suggest that THR contributes to improved participation in valued life roles for children experiencing disability, regardless of their diagnosis. THR was found to be an accessible activity, allowing meaningful participation for children with a disability and riders experienced the THR therapeutic landscape in a context which promoted their capacities and strengths, rather than their difficulties. THR also provided opportunities for a broad range of learning experiences, with the child playing an active part in their own learning within the intervention. These opportunities contributed to a rider’s enlarged self-concept regarding how they moved, what they perceived themselves to be good at, who they connected with, and how well they coped with change. Rachelle had the privilege of reporting back to the New Zealand Riding for the Disabled Association (NZRDA) Board and at the NZRDA national training seminar for THR coaches, therapists, volunteers and regional board members – turning research into action! It was valuable to be able to talk through the key findings, and then to start to discuss in what ways the conclusions and recommendations could be implemented within national policies and processes, and in how THR is delivered within each of the 56 RDA groups spread across NZ. A real highlight was coming away with a collection of questions and suggestions from people who attended the workshop. These will help guide the development of a range of resources (e.g. online videos, information sheets and training packages) to be used across the NZRDA organisation. So far in 2018, BAIL has conducted many interesting and interactive workshops and presentations at Burwood Hospital. Videos of our lectures and presentations are posted on our website, so please check-in and also make sure to keep up-todate on BAIL’s activities www.burwood.org.nz. Please contact our Operations Manager, Kathy Duncan, if you wish to be added to our newsletter subscription Kathy.Duncan@burwood.org.nz From all the BAIL team, we wish you all the best for the rest of the year! POEM - PAIN Pain. What words can be used to describe this feeling? Burning. Searing. Encompassing. Overwhelming. Tingling. Isolating. Withdrawn. Subdued. Limiting. Scary. Stinging. Frustrating. Angry. Hopeless. Beaten. Cold. Unable. Spasm. Shaking. Uninspiring. Embrace it, accept it, and fight it. Don’t let the flame go out and don’t let the bastards get you down. This experience, this being in the world, is all encompassing and very powerful. It takes over your existence, your ability to think, your ideas, your focus, your desires, your hope, your identity. You disappear. It severely limits your ability to be, and interact with, your family and others around you. The smallest tasks are completely overwhelming. Just opening your eyes is a success. Concentrating and interacting in conversation is fighting back. Having the energy to think of ways to mitigate the pain is exhausting: even painful. A hot cup of tea. A hot shower relieving my head, my neck, and my shoulders. Stretching, arnica cream, medication, warm weather, sunshine, silence, laughter, and another hot cup of tea. The painkillers are starting to take hold and the world slowly comes into focus. Ideas enter my mind. Inspiration begins to return and the flame burns brighter. I feel hope: there is beauty, there is future, and there is love from those around me. There is collective resistance against the challenge; there is strength. There are no rules and there are no limits: the world and life really is an opportunity to be explored: is there a better panacea than that? (Anonymous). 21
Page 1 and 2: AJ POUOA We meet one of New Zealand
Page 3 and 4: EDITORIAL GET BACK TO THE REAL WORL
Page 5 and 6: 5
Page 7 and 8: AJ Pouoa is making a big difference
Page 9 and 10: KALEIDOSCOPE By Noretta Boland, Kal
Page 11 and 12: IMPROVING OUR UNDERSTANDING OF SPIN
Page 13 and 14: “Now I can drive more safely usin
Page 15 and 16: We sometimes take the knowledge we
Page 17 and 18: JOURNALS / MAGAZINES Forward: life
Page 19: KNOW YOUR RIGHTS with John Miller L
Page 23 and 24: TIPS FROM YOU • Wear a beanie •
Page 25 and 26: “It was not just lying in bed ‘
Page 27 and 28: Stand with Confidence www.euromedic
Page 29 and 30: house to make it an accessible home
Page 31 and 32: Stand Without Compromise For more i

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