Multiple Sclerosis Advisory Council | Non-profit organisation

Multiple Sclerosis Advisory Council

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24.01.2022 This Q & A session on pilates may be of interest to some of you. Alison

24.01.2022 MSL has launched a new online tool 'My NDIS Filter' It helps you sort through all the information and tailors a free report just for YOU. All you have to do is answer a few questions. Alison https://www.ms.org.au/national-disabili/my-ndis-filter.aspx

23.01.2022 People with Multiple Sclerosis - Vic are holding their annual conference on Sat 4th May. Are you keen to hear about current MS treatments and research that is underway? If so, don't miss the conference where A/Prof Anneke van der Walt will provide a very worthwhile update for people living with MS. Registrations are closing soon so don't miss your opportunity to be involved. Can't attend in person then take advantage of the live streaming of the event. Knowledge is Power for anyone living with MS!

20.01.2022 How do you manage your heat sensitivity? Researchers at the University of Sydney would love to hear your ideas. Alison

19.01.2022 MSL will be running a number of webinars over the next few weeks. Have a look at what's on. https://www.ms.org.au//education/ms-education-programs.aspx There are also lots recorded in the webinar library https://www.ms.org.au/support-servic//webinar-library.aspx

19.01.2022 Some news from MSL EXTENDED MS CONNECT HOURS STARTING 1 JULY MSL will be trialling new EXTENDED hours as of 1st July to make it easier for you to contact them. Call or live chat from 8am to 6pm and talk to any of the MS Connect Specialists.1800 042 138... Email anytime [email protected] See more

18.01.2022 The Multiple Sclerosis Advisory Council for Victoria (MSAC Vic) is recruiting! Applications are sought from people interested in joining the Multiple Sclerosis Advisory Council for Victoria, (MSAC-Vic). MSAC-Vic is a community advisory board made up of people with multiple sclerosis and family members of people with multiple sclerosis. The Council reports to and advises the board of Multiple Sclerosis Limited, (MS), the pre-eminent source of information, advice and services ...for people living with multiple sclerosis within ACT, NSW, Victoria and Tasmania, on issues primarily to do with MS’s communication with and services to people with MS. MSAC-Vic aims to represent the needs and views of the whole multiple sclerosis community. MSAC-Vic is seeking up to four new members. Any interested member of the Victorian multiple sclerosis community is welcome to apply, including young people with MS, recently diagnosed individuals, people living in a rural or regional area, and people from culturally diverse backgrounds, and any other interested MS community members. For a position description, more information about MSAC or the application process, please contact Kim Farrugia on [email protected] (preferred contact method) or (03) 9845 2702. Applications close on Monday 8th October 2018 at 5pm.

18.01.2022 Step Training for People with MS. This research study is recruiting people in Metropolitan Sydney. You can find more information about the study here: https://www.neura.edu.au/clinical-trial/step-training-ms/ Alison

18.01.2022 An interesting read. Alison

18.01.2022 Accessibility Weekend is a FREE event providing access to Victoria's favourite attractions for people who use a wheelchair and their carer. Join us to celebrate access and inclusion for people with a physical disability.

18.01.2022 MS Australia would like to hear from anyone who has experienced similar issues. Alison

16.01.2022 Contact MS Connect for information on a number of topics including continence issues. Alison

14.01.2022 Did you see the Insight program on SBS last night? If you missed it, you can catch up by following the links on their Facebook page to SBS On Demand.

14.01.2022 MSL have asked us to share this news from The Summer Foundation. The Summer Foundation is launching 'The Housing Hub' a new website that helps people with disability to connect with the housing market place. They will host a number of information sessions to demonstrate The Housing Hub. For more information contact Olga Elia at The Summer Foundation on (03) 9894 7006. Alison

14.01.2022 No, NDIS doesn't invalidate your Health Care Card There’s been some confusion about Health Care Cards and the NDIS namely people being told they can no longer use their Health Care Card that was associated with the Mobility Allowance once they’ve started on an NDIS plan. So let’s clear it up: Your NDIS plan DOES NOT affect your eligibility to keep your Health Care Card associated with the Mobility Allowance. If you’re on an NDIS plan and your Health Care Card has been canc...elled, Centrelink will reinstate it. What will cease if you had a Mobility Allowance before moving to an NDIS plan is the allowance itself but this can be replaced by funding for transport in your NDIS plan. So make sure your NDIS Planner or LAC knows you’re receiving this allowance during your planning discussions with them. MSL can support you in speaking to Centrelink, so call MS Connect on 1800 042 138 to tell us about your circumstances. We’ve also got plenty of information available in the common questions section of our NDIS Hub. This article was in the latest MS Intouch. Alison

14.01.2022 It's National Carers Week. Thank you to all carers for everything you do, not just this week but all year round. Alison

12.01.2022 Parking is a topic near to many hearts. This blog is is about an experience that many will relate to. Alison http://www.msconnection.org//August-2017/You-Shouldn-t-be-

11.01.2022 QUESTIONS ABOUT MSL. ASK THE BOARD. Comments we’ve seen on the face book pages and heard from fellow PwMS suggest that many of you have questions about the MS organisation (MSL) and where it’s heading as the NDIS rolls out. A Meet the Board webinar is scheduled for late November, and to help them prepare, the Board has asked us to identify some issues you would like them to discuss. Maybe you have questions about how MSL can help with your NDIS plan, or what services they... now provide, or how the organisation is supporting people over 65 years old who are not eligible for the NDIS. Or maybe you are wondering about how fundraised money is spent, or you have questions/concerns about something totally different. Please email your suggested topics to us at [email protected] by Sunday 29 October. Of course, there may not be time to address every issue, but there may be further opportunities to ask questions in face-to-face community forums scheduled in 2018. The exact date and time of the webinar will be widely advertised, so stay tuned. Alison See more

11.01.2022 For all you budding artists, the MS Art Show is accepting entries until 7th June. Alison

10.01.2022 There are lots of great webinars on the MSL website. Alison

10.01.2022 MS Chair, Peter Day, and MS CEO, Robyn Hunter invite you to participate in a Community Engagement Forum via webinar where you will have an opportunity to converse with the MSL Board. Access to webinar via desktop, laptop, tablet, or smartphone once you have registered below. To register, please click on/copy the following link: https://attendee.gotowebinar.com/regist/4579337673255812611 RSVP by Tuesday 21 November 2017 by registering on the link above.

09.01.2022 An MSL program which we have been asked to share. Alison SUPPORTING CARER WELLBEING 26 October to 30 November 2017 Thursdays 1:30pm to 3pm... RSVP - Tuesday 24th October MS Connect on 1800 042 138 Aim: To provide an opportunity to share information, education and support, to stay well and connected. Audience: Family members or carers of people living with multiple sclerosis including partners, parents or siblings. We will support you to choose topics and speakers relevant to your needs as a group Program: 10 people are connected through teleconference 1.5 hours per week 6 weeks Possible topics: Understanding carers needs Strategies for wellness Self-care: services and supports Impact on relationships See more

09.01.2022 MSAC-Victoria wants to hear your opinions, and get your feedback, so we have developed a very short survey on MS Connect. We are interested in your experience with MS Connect or, importantly, if you have never contacted the service, we’d like to know why. MS Connect is available in Vic, NSW, ACT and TAS. The survey is anonymous, and we hope you will take a few minutes to complete it wherever you may live. You can get started by clicking on the link below. The survey will close 31 August. Many thanks Alison. https://www.surveymonkey.com/r/PT2MTSM

09.01.2022 Message from Esis Tawfik, Senior Manager MS Connect MS ART show We are very excited to announce that applications are now open for this year’s MS ART show. If you express your art through paintings, photography, craft, jewellery making, pottery, sculptures we would love to hear from you. Please send your expression of interest to [email protected] or contact MS Connect on 1800 042 138 and we will get back to you with the details.

09.01.2022 Message from Multiple Sclerosis Limited As part of the Victorian. And proud of it. campaign, the Victorian Government is hosting a Mothers day luncheon for a group of 100 seniors (women) from across Victoria at the Sea Life Melbourne Aquarium on Friday May 11th 2018 from 12-2pm. The event aims to celebrate the everyday examples of contributions and belonging that senior Victorians and mums from all walks of life make big or small and will feature an address from the Minister... for Women/Commissioner for Seniors, a high profile inspirational guest speaker, a 3 course lunch, performances and an all day access pass to Sea Life Aquarium for all attendees. We are thrilled to have been offered this opportunity and have 8 free tickets to this event to give away. Criteria is that you a female 60 years of age or above and can get to the aquarium in Melbourne CBD or live no further than a 30 km radius (the organisers will organise travel for you). Please reply to [email protected] to book your spot basically the first 8 to respond will be accepted.

08.01.2022 MSAC-Vic sends best wishes for the New Year. May it treat you kindly and may your MS do what you tell it! We hope everyone has a very relaxing summer break and we'll be back in February. Alison

08.01.2022 Congratulations MSRA on receiving this esteemed award. Alison

08.01.2022 Step training for people with MS research study has come to Victoria. There has been a fantastic start with recruitment but they are still looking for more participants. For more information go to https://www.neura.edu.au/clinical-trial/step-training-ms/

08.01.2022 If you are thinking of a unique gift for Father’s day (or a birthday or just to treat yourself because you are WORTH it!) please consider purchasing a piece of art from the 2018 MS ART EXHIBITION https://www.ms.org.au/events-fu/ms-art-exhibition-2018.aspx. We have made is super easy this year, and you can make your purchase from the comfort of your chair (a flat shipping charge of $20 only). All proceeds go directly to the artists with a small percentage going back to MS to ...help support our services. The 2018 Winner of the Barry Allen Art Award Penny Alexandra Lifetime Digital Photography

07.01.2022 Great news for Victorian wheelchair users who have modified their cars to drive. Alison

06.01.2022 SBS TV’s national program Insight is in the early planning stages for a program dedicated to MS. As you probably know, Insight is recorded in front of a live studio audience, including experts and those with a lived experience. SBS is currently recruiting for a studio audience, and is also seeking feedback on the question, How are you managing your Multiple Sclerosis The email contacts at SBS are: [email protected] and [email protected] to share your stor...y. We’d really encourage you to join in the conversation and share your stories on the SBS Facebook page, and for those living in and around Sydney (or visiting Sydney at this time) we’d also encourage you to apply to be in the studio audience. Alison

04.01.2022 MSL have a fairly new 'Telegroup Program' They have a new group starting soon 'Afterhours Telegroup for Working People with MS' Date: First Thursday evening of the month starting October 5th Time: 7-8pm This is an opportunity to connect working people with MS to share information and support after hours. ... Up to 10 people are connected over the phone once a month for one hour. It is up to the group what topics and information they would like to share. Guest speakers can be arranged to discuss key areas identified by the group or it can just be a social opportunity to connect. The group will be facilitated by Charlene and Andrew who are trained peer support volunteers who are working full time. Contact MS connect on 1800 042 138 or [email protected] for further information.

03.01.2022 Seeing MS Award nominations for 2017 are now OPEN! MSL presents the prestigious Seeing MS Award to a special person each year, in recognition of their outstanding effort in exposing the invisible disease. The Seeing MS Award recipient will demonstrate how they have:... helped the general community understand multiple sclerosis at a national or state/territory level and had a positive impact on the MS community. Here is the link where you can nominate someone you think meets these criteria. https://www.ms.org.au//ne/seeing-ms-award-nominations.aspx: Nominations close September 22 with the winner announced at the MSL AGM on 25 October 2017. Alison

03.01.2022 MSL is running the following Teleconference program. SUPPORTING CARER WELLBEING Aim: To provide an opportunity to share information, education and support to stay well and connected.... Audience: Family members or carers of people living with multiple sclerosis including partners, parents or siblings. THE PROGRAM Program: 10 people connected via Teleconference 1.5 hours per week 6 weeks Topics: Understanding MS symptoms Diet & exercise for wellness Strategies to support emotions Stress management & self-care Services & supports Tuesday Evenings 1st May - 5th June @ 7pm - 8:30pm. Contact MS Connect on 1800 042 138

02.01.2022 RESPITE SURVEY MSAC-Vic has been aware for some time that the availability of both long- and short-term respite care is an issue. Because respite itself can be multifaceted, occurring in the home, the community or care facilities with the need to consider respite also varying, we would like to better understand the needs and experiences of the MS community. To this end, we have developed a questionnaire for people with MS (PwMS) and carers to learn about your experiences wi...th respite and give us a picture of what is currently happening in this area in Victoria. This information will help us MSAC-Vic has been aware for some time that the availability of both long- and short-term respite care is an issue. Because respite itself can be multifaceted, occurring in the home, the community or care facilities with the need to consider respite also varying, we would like to better understand the needs and experiences of the MS community. We have developed a questionnaire for people with MS (PwMS) and carers to learn about your experiences with respite and give us a picture of what is currently happening in this area in Victoria. This information will help us evaluate respite needs, the level of services available, and the steps PwMS/carers need to take to arrange this type of care. Importantly, your input will allow us to better advise MSL on unmet needs. The survey shouldn’t take long, and we hope you can spare a few minutes to complete it. We greatly appreciate your input. The survey will close Friday 6 September. To start, click on this link. https://www.surveymonkey.com/r/XCQQ5NG Kind regards, MSAC-Vic

02.01.2022 HELP GET OCREVUS ONTO THE PBS FOR PRIMARY PROGRESSIVE MS. The Pharmaceutical Benefits Advisory Committee meeting in November this year will be considering Ocrevus for listing on the PBS for primary progressive MS. Affordable access to all MS treatments is paramount, but most intensely so for those with progressive forms of MS who, have no treatment options available. Members of the MS community can have their voice heard by making a submission to the PBAC via the pbs.gov.au ...website before 4 October We can help persuade the Pharmaceutical Benefits Advisory Committee to recommend Ocrevus for listing on the PBS for primary progressive MS, by making a submission using the link below http://www.health.gov.au//Cont/PBAC_online_submission_form This is important and there is some urgency as the deadline for submissions is 4 Oct. Alison

01.01.2022 Call for Participants by the Centre for Health Equity - The University of Melbourne Melbourne School of Population and Global Health Project: Knowledge and view...s on fatigue in chronic illness If you are aged between 18 and 65, have a chronic illness and experience persistent fatigue, I would like to talk to you! I am a PhD student at the University of Melbourne, doing a study on what life is like for people who experience chronic fatigue, whether as the result of a medical condition known to cause fatigue, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or as a result of some other medical condition; examples include Rheumatoid Arthritis, Multiple Sclerosis (MS) and Inflammatory Bowel Disease (IBD). I am interested in hearing from people with all kinds of different chronic illnesses, not just those suggested above or those traditionally 'known' to cause fatigue. Due to the limitations in length and scope of the PhD project, I cannot include people who do not have a diagnosis of a 'physical' medical condition, so if you have a diagnosis of primary insomnia or a mental health condition, but no other diagnoses, I am not able to include you in my research at this time. However, if you have been diagnosed with both a mental and a physical health condition (e.g. arthritis and depression), then you do qualify for participation in the study. People who have multiple physical medical conditions are also welcome to participate. Participation will involve an interview with me about your fatigue and its impact on your life either by email, phone (including Skype or FaceTime) or face-to-face. A face-to-face interview would take place in a mutually-agreed upon location (e.g. a meeting room on the University of Melbourne campus, a shopping centre cafe, or your own home). I estimate that the interview would take approximately one hour (however, the length of the interview may differ depending on your needs). If you would like to participate or find out more, please contact me at [email protected] Monika Dryburgh, PhD candidate Centre for Health Equity, Melbourne School of Population and Global Health The University of Melbourne Read more .. Fatigue is a symptom commonly experienced by people with chronic illnesses, and often has a large impact on quality of life. Much research conducted on fatigue however, fails to ask people with chronic fatigue about their experience. This project seeks to describe a range of experiences of chronic illness related fatigue for working aged Australians. The aim of the study is to describe the experience of chronic illness-related fatigue for working age Australians with physical illnesses and/or disabilities, and how they experience the medical system. Interviewing you will help me to do this by giving me valuable insight into what life with chronic fatigue is like. I will also be interviewing some healthcare professionals and/or researchers with a particular interest in fatigue in chronic illness. What is Chronic Illness-related Fatigue? Fatigue is a subjective, unpleasant symptom which incorporates total body feelings ranging from tiredness to exhaustion creating an unrelenting overall condition which interferes with individuals' ability to function in their normal capacity (Ream & Richardson, 1996: 527). It is made up of physical, cognitive and emotional components. Chronic or persistent fatigue, is usually defined as fatigue which lasts for six months or more. It does not have to be present twenty-four hours a day to be considered chronic. Chronic fatigue is a common experience for many people with a wide variety of chronic illnesses and/or disabilities. It goes beyond the normal varieties of feeling tired or sleepy that everyone feels: it is more intense, lasts longer and can be completely overwhelming. Sometimes people who experience chronic fatigue due to a chronic illness or disability will receive a diagnosis of Chronic Fatigue Syndrome, but more often not, especially if there is a growing awareness in the medical professional that their illness or disability causes fatigue. (e.g. it is well-recognised by many doctors that Multiple Sclerosis causes chronic fatigue). The project is being conducted by Ms Monika Dryburgh, a PhD student in the Centre for Health Equity within the Melbourne School of Population and Global Health at the University of Melbourne, under the supervision of Dr Louise Keogh, Dr Richard Chenhall and Dr Philomena Horsley. This project has been approved by the University of Melbourne Health Sciences Human Ethics Sub-Committee. The approval number is 1441634.1. What will I be asked to do? If you agree to participate, I will contact you to arrange an interview on the topic of sleep, fatigue and chronic illness. I will ask you about your experiences with illness, disability and fatigue, how it affects you, and how it affects your interaction with the medical system. The interviews can be conducted via email, face-to-face or over video call (FaceTime or Skype), according to your needs and preferences. The discussion can also be broken up into multiple sessions if necessary. The time of day and location of the interview is also up to you. I will also ask you to provide some basic demographic information, and to fill out two short surveys measuring fatigue and sleepiness (the SF-30 and the ESS). Recording the interview With your permission, the interview will be audio recorded (for face-to-face and video call interviews) or collated into a transcript (for email interviews) so that I can ensure that I have an accurate record of what you say. When the recording or email record of interview has been transcribed, you will be provided (via email or post) with a copy of the transcript, for your input regarding any corrections, deletions or comments. It is not compulsory to read, comment on, or return the transcript. Location and time of day Face-to-face interview will take place at a mutually agreed-upon time and place; for example, I could travel to your home, or we could meet in a public place. Email and video call interviews can take place at a place convenient to you where you have internet access. Face-to -face and video call interviews will take place at a mutually agreed-upon time; if you are participating in an email interview, you can participate whenever you like after I have sent the questions. You can also request all the questions at once or to have them in smaller batches. Time commitment I estimate that the total time commitment required of you will be 10-15 minutes to complete the surveys, around one hour for the interview itself, plus some additional time later (half an hour to an hour) for looking over the interview transcript and making comments, if you choose to do this. However, the length of the interview may differ depending on your needs. If you become excessively fatigued or have a flare-up of other symptoms we will be able to suspend the interview and continue later if you want. There will also be the option of continuing on another day, via email or FaceTime/Skype interview. Setting a time limit on length of interview sessions There is no set minimum length of time for interviews; however, as a practical guideline, it would be best to think of interviews as likely to last at least twenty minutes. If you want to set a time limit before the interview begins, according to your energy levels and other commitments that day, I would also welcome that. There will also be the option of continuing on another day, via Skype/FaceTime, or via email. The time structure of the interviews is up to you. For example, if you know that you will never be able to do an interview session for longer than 15 minutes, but expect that you would like to talk for longer than that overall, we can plan multiple interview sessions across an afternoon, or across different days. If you need to suspend the interview If you begin to feel excessively fatigued or otherwise unwell during the interview, the interview can be halted and resumed later, or not, at your choice. I don’t want to impact negatively on your life in conducting my interview! If you feel distressed during or after the interview and need advice or support, you can contact Lifeline Australia (13 11 14, or chat online at www.lifeline.org.au) or beyondblue (1300 22 4636, or chat online at www.beyondblue.org.au). How will my confidentiality be protected? I will protect your anonymity and the confidentiality of your interview responses to the fullest possible extent, within the limits of the law. Your name and contact details will be kept in a password-protected computer file kept separate from your interview data. Your name and contact details will only be able to be linked to your responses by me and my supervisors, for example to check where I should send your interview transcript. In the final report, you will be referred to by a pseudonym of your choosing, unless you prefer to be identified by your own name. If you choose to be anonymous, I will remove any references to personal information that might allow someone to guess your identity, however, you should note that as the number of people I seek to interview is very small (around thirty), there is a small possibility that someone may still be able to identify you. Your data will be kept digitally and in hard copy and will be stored securely by the Melbourne School of Population & Global Health for five years from the date of completion of my thesis, before being destroyed. How will I receive feedback? When my thesis is complete, I will write up a brief summary of the findings. I will send you a copy of this upon request. It is also probable that the results will be presented at academic conferences and submitted for publication in academic health and/or social sciences journals. Can I withdraw from the study? Your participation in this study is completely voluntary. If you would like to withdraw at any stage, or to withdraw any unprocessed data you have supplied (interviews or parts of interviews), you are free to do so. Once the transcript of your interview has been finalised, it can no longer be withdrawn. I will consider the transcript finalised when I receive your comments/corrections, or if I do not hear from you within sixty days of you having received the transcript. Can I tell other people about the study? Yes, you are encouraged to tell other people about the study. You can pass on my email and mailing address to anyone who might be interested. Where can I get further information? For further information about this project and what to expect as a participant, you can contact me at [email protected]. You can also contact my principal supervisor, Dr Louise Keogh, by email at [email protected], or on 03 8344 0692. If at any time you have any concerns regarding the conduct of the project, which you do not wish to discuss with me or my supervisor, you can contact: Executive Officer Human Research Ethics University of Melbourne VIC 3010 (03) 8344 2073 How do I agree to participate? If you would like to participate, please indicate that you have read and understood this information by signing the accompanying consent form and returning it to me. I will then contact you by email or phone to arrange a mutually convenient time for an interview. You can email a scan of your signed consent form to [email protected], or mail it to the following address: Monika Dryburgh, c/o Centre for Health Equity Melbourne School of Population and Global Health 207 Bouverie Street The University of Melbourne VIC 3010

01.01.2022 A date for your diary. Attend in person or watch the live stream. Alison