Our Projects & Programs
The Multiple Sclerosis and Employment Forum
The Multiple Sclerosis and Employment Forum was held on 1st June 2011 at the Hotel Grand Chancellor in Hobart. This was made possible by the generous sponsorship of Novartis Pharmaceuticals Australia Pty Ltd.
The Forum was initiated in response to current research on the economic impact of Multiple Sclerosis in Australia, together with evidence from the Client Services team of the Multiple Sclerosis Society of Tasmania, illustrating that many of the Society’s clients require support to deal with employment issues. In addition, the national theme for 2011 World MS Awareness Week – 26th May to 5th June – was employment. The theme of the Forum was both relevant and timely.
The aim of the Multiple Sclerosis and Employment Forum was to raise awareness in the employment, health, community services and disability sectors of the ways in which a diagnosis of MS impacts on an individual’s ability to maintain an active role in employment, and the ways in which an employer can maximize the opportunities for a person living with MS to continue to work. To this end, the Forum’s target audience was drawn from organisations including government departments, disability services, employment services, healthcare services, major employers and allied health professionals.
A total of 40 people gathered in Hobart for the Forum. Minister Cassy O’Connor, Minister for Human Services, conducted the official opening, and the participants then heard presentations by Dr Rex Simmons, Mr Stephen Jolly, Ms Robin Banks, Ms Roz Smart and Ms Alex Newton. In addition, a presentation by two clients of the MS Society and one employer gave personal insights into workplace experiences.
During the lunch break a Mini Expo provided the participants with information on the services offered by the Centrelink Financial Information Service, Manpower, the National Disability Coordination Office, the Anti-Discrimination Commission, WISE Employment and the Multiple Sclerosis Society of Tasmania.
The Australian MS Longitudinal Study and the Economic Impact of MS
Dr Rex Simmons, Principal Research Fellow at Canberra Hospital, is the project manager for the (AMSLS). Rex spoke about the processes, participation and projects of the Australian MS Longitudinal Study and the structure of their database. He explained the nature of the surveys that provide the information for the study and the type of information collected. Rex further presented on the AMSLS Economic Impact of MS Study that was conducted in 2003 and repeated in 2007-8.
Rex also discussed the National MS Employment Survey organised by MS Research Australia and conducted in 2009- 2010, the data from which is still being analysed. This survey looked at data relating to persons with MS in employment compared to the general population.
In a second short presentation, Rex also shared with the Forum some information from the research of Professor Andrew Palmer of the Menzies Research Institute of Tasmania and his colleagues. This information, entitled Prevalence and Costs of Multiple Sclerosis in Australia 2010, looked at the prevalence of MS in Australia and the associated economic costs
MS and the Issues that Affect Employment
Mr Stephen Jolly spoke about the impact of MS on employment and on everyday life, and gave information about the Disability Employment Services, Employment Support Service delivered by MS Australia.
Stephen discussed the symptoms of MS and the ways in which these symptoms can impact on a person’s everyday life and on employment. Stephen further discussed practical ways in which symptoms could be managed in the workplace to enable a person living with MS to remain in employment and to enjoy all the inherent benefits of doing so. Read more click here.
Discrimination in the Workplace
Anti-Discrimination Commissioner Ms Robin Banks spoke about the legislation governing Disability Discrimination and discussed the types of discrimination in the workplace, the grounds for applying anti-discrimination laws and the processes of discrimination complaints. Senior Training, Education and Development Officer Ms Roz Smart described her role and the training opportunities available in the area of workplace diversity and anti-discrimination.
Workplace Experiences
This part of the program featured three speakers - two clients of MS Tasmania who have been diagnosed with MS and who have continued in employment, and Kerri Rafferty, who is the Safety and Wellbeing Advisor for James Boag and Sons / Lion Nathan.
The two clients of MS Tasmania generously shared their experience of MS and described the ways in which it impacted on their lives and their ability to continue working. They further discussed the issues surrounding disclosure of their diagnosis and the support that has been provided by their respective employers.
Kerri Rafferty discussed the commitment of James Boag and Sons / Lion Nathan to provide support for employees, including a staff member who is living with MS. She described the nature of this support, which is designed in consultation with the employee. Kerri explained that the approach is part of the company’s Achievement Culture, of which wellbeing is a key element.
Future Directions
Ms Alex Newton, Program Manager for the Operational Support Team at WISE Employment, spoke about the role of WISE in supporting disadvantaged members of the community and providing assistance to job seekers and employers under the Australian Government’s Disability Employment Services.
The feedback from the evaluation forms completed by the participants was overwhelmingly positive. Every speaker was very well received, with almost 100% of the responses ranking each presentation excellent, very good or good. Every respondent also indicated that they would recommend the Forum to others.
The written comments included:
- Really informative day – very good speakers. Thanks for an enriching day
- Fantastic and diverse information. Thank you very much
- Good variety of speakers and content
- Great to have personal stories from MS clients and employer
The Multiple Sclerosis and Employment Forum was a very successful day and it provided information that was current and relevant to a range of key stakeholders, who either directly or indirectly may be supporting Tasmanians with Multiple Sclerosis.
Liz Freeman, Occupational Therapy Tasmania - Belinda McDermott, WISE Employment Services - Darlene McLennan, National Disability Coordination Officer
Lynsey Spaulding, Senior Case Manager and Michael Mortensen, RN/MS Support Services
Research, Aids & Equipment Forum
On 24th March 2011, the MS Society held a Research, Aids and Equipment Forum in Launceston, generously sponsored by Bayer Schering Pharma.
The Forum aimed to provide people with MS and their families with information about moving towards self-management, by acquiring up-to-date and relevant information about current and future research including clinical trials in Tasmania, and also to provide information about and practical experience of assistive aids and equipment.
All registered clients of MS Tasmania and their families were invited to attend the forum, which was provided at no charge to the participants. To allow for maximum participation, coach transport from Burnie and from Hobart was arranged at a small charge which a number of people chose to use.
One hundred and nine clients and supporters attended the Forum, with many people travelling from the South and North-West of the State. The inclement weather on the day did not deter people from attending and this was a clear reflection of the level of interest in the Forum’s research focus.
Of those in attendance on the day, 92 people completed the evaluation form. The feedback on the day was overwhelmingly positive with 95% of the participants saying that they would recommend the Forum to others. The responses relating to each individual presenter were also very positive, with participants indicating a high level of satisfaction with the content and presentation style of every session.
There were four presenters on the day, including:
Megan Varlow, Clinical Psychologist, MS Australia click here to view full presentation
Active Strategies to Manage Pain
Megan discussed the incidence of pain in MS, citing studies that demonstrate the prevalence of pain is high in people with MS, with between 48% and 66% reporting pain among their symptoms. Megan said that 40-57% of people with MS report constant pain.
Megan explained the impact of pain on the lives of people with MS, including lower quality of life, increased doctors’ visits, increased levels of stress and an impact on employment.
She then discussed the recommended treatments for pain in MS, outlining the importance of consulting a general practitioner and neurologist for help with pain management, together with the role that can be played by the support of family and friends. Megan also discussed types of medication that might be beneficial in pain management.
Finally Megan emphasised the importance of utilising practical, active pain management strategies to maintain function despite pain, includingeg activity pacing, relaxation and stress management, and challenging unhelpful thoughts. Megan also mentioned specialist pain clinics as well as accessing publications that are available through the MS Society.
Sue McGregor Clinical Research Nurse, MS Society of Tasmania
MS Clinical Research in Tasmania
Sue began her presentation by explaining that an opportunity arose almost three years ago for the collaboration between the Neurological Department of the Royal Hobart Hospital (MS Clinic) and the MS Society to assist in providing patients access to clinical trials in new and emerging therapies for multiple sclerosis. This collaboration has allowed patients, for the first time, to access clinical trials that previously had only been available on mainland Australia. Under the leadership of Dr Michael Dreyer, Director of Neurology and principal investigator, the first clinical trial commenced recruitment in 2008.
Sue went on to describe the following clinical trials that are currently being undertaken with Tasmanian participants, and to expalin the factors impacting on patient participation. She concluded by emphasising that the clinical trials adhere to the conditions of Good Clinical Practice (GCP), which is an international ethical and scientific quality standard for designing, conducting, recording and reporting trials that involve the participation of human subjects.
Dr Jim Stankovich, Biostatistician, Menzies Research Centre click here to view full presentation
The Genetics of MS
Jim explained the genetic complexity of MS and discussed the current research into genetic risk factors and the genes that affect the immune system. He went on to explain the latest genetic testing procedures and the genes that have been identified as possibly being causative factors in MS.
Jim also discussed the studies currently being undertaken by ANZGene – the Australian and New Zealand MS Genetics Consortium. He also pointed out the interconnectedness of research into the role played by vitamin D, ethnic ancestry and genetics in causing MS.
Associate Professor Bruce Taylor, Menzies Research Centre click here to view full presentation
MS Research in Tasmania – Looking Forward
Bruce began his presentation by discussing the incidence of MS in history, naming historical figures who showed evidence of the symptoms of MS. He then mapped the typical activity of MS over time in a person who has been diagnosed.
Bruce went on to explain the likely causes of MS, pointing out the interplay of infectious agents, environmental factors and genetic factors. He described the geographic gradient worldwide and within Australia, and the prevalence of MS in Tasmania. He also pointed out the incidence in females, the risk in relatives and the effects of smoking.
Bruce then talked about the current research into the role of UV radiation and vitamin D in MS, explaining that there is evidence at an ecological level that vitamin D may be important in preventing relapses and onset of MS.
Assistive Aids and Equipment
During the lunch break Independent Living Centre of Tasmania presented an interactive display of assistive aids and equipment to enable clients to look at the latest items available.
Presenter Megan Varlow & forum participant Hanna Street
GP Education Forums
It is vital to ensure that Tasmania’s General Practitioners and Practice Nurses are given the opportunity to access the latest information in the field of diagnosis, management and treatment of Multiple Sclerosis. With this in mind, the Client Services Team has organised a series of seminar evenings for GPs and nurses, in partnership with the three GP Networks – GP South, GP Northwest and GP North.
Associate Professor Bruce Taylor will be speaking on the topic of the Contemporary Management of Multiple Sclerosis, and a member of the Client Services Team will be explaining the services of the MS Society and the referral process.
The seminar evenings will be held in May in Ulverstone and Launceston, and have been made possible by the generous support of Sanofi Aventis.
General Practitioner Education Seminar
A series of three General Practitioner Education seminars have been held across Tasmania this year, supported by sponsorship from Sanofi-Aventis.
The purpose of the seminars was to educate GPs and Practice Nurses aboutthe complexities of Multiple Sclerosis (MS), the latest research, diagnostic indicators, treatment options, the referral process and the support services provided by the Multiple Sclerosis Society of Tasmania.
The seminars were organised in collaboration with the three General Practice networks – GP South, GP Northwest and GP North, a partnership that also has the benefit of strengthening the relationship between MS Tasmania and these organizations.
Across the three venues – Hobart, Ulverstone and Launceston - Associate Professor Bruce Taylor, who generously donated his time and expertise, addressed a total of 88 GPs and Practice Nurses on The Contemporary Management of Multiple Sclerosis. His presentation included information on the types of MS, symptoms, diagnosis and disease progression. He also discussed the incidence of MS in Tasmania and across the world, as well as current thinking on the causes of the disease and treatment therapies.
MS Society Nurses Teresa Warren and Kim McCarthy clearly described the referral process, and reinforced the presentation with a handout to summarise the process that GPs need to follow if they suspect a diagnosis of MS. MS Society’s Senior Case Manager Lynsey Spaulding was also in attendance at each venue, and the MS Society provided a table of resources and brochures for the GPs and Practice Nurses to take with them.
The evaluations completed by the attendees were very positive, with all respondents indicating a high level of satisfaction with the overall presentation and content of the seminar. All respondents also felt that the event increased their understanding of the complexities of MS, diagnosis review and available treatment, and their knowledge of current MS research and trials and referral pathways.
Information is Power (Stage 2)
The second Information is Power seminar was held around the state in April, following on from the first seminar in November 2010. All clients of MS Tasmania were invited to the seminars and a total of 67 people attended in Launceston, Hobart and Ulverstone. The seminars were made possible by the generous sponsorship of Biogen Idec Australia Pty Ltd.
Eating for Good Health
The session on Eating for Good Health was presented by dietitians Sonia Valtas (in Hobart), Emily Gatenby (in Launceston) and Sara Beyer (in Ulverstone). This presentation included general information on healthy eating and wise food choices, incorporating foods from all the food groups. The role of nutrition in managing MS was also explored, together with suggestions for healthy meals and snacks and tips for making food preparation more manageable. Click here to read more.
Exercise
The presentation entitled Exercise for Health and Well-being featured physiotherapists Karen Ashworth (in Hobart), Scott Beeston (Launceston) and Edwin Roberts (Ulverstone), and included information about exercising to maintain fitness, strength and flexibility with MS.
Discrimination
Discrimination was the subject of the presentation at all three venues by Kim Hambley, who is the Manager and Principal Solicitor at the Launceston Community Legal Service. Kim discussed Disability Discrimination Law and explained the jurisdiction of Federal and Tasmanian State authorities in this field. She discussed the types of discrimination – both in the workplace and in other areas – and the grounds for applying anti-discrimination laws. Kim also outlined the avenues and processes of discrimination complaints, and the role of the Community Legal Service.
Disclosure
Case Managers Lynsey Spaulding (in Hobart) and Helmuth Seidensticker (Launceston and Ulverstone) spoke about MS and Employment – Disclosure. Lynsey and Helmuth emphasised that the decision to disclose a diagnosis of MS to an employer and work colleagues is a personal choice, although there are some circumstances in which disclosure may be compulsory. They outlined the advantages and disadvantages of disclosure and the issues to be considered when making the decision about disclosure.
Stress Management and Dealing with Emotions
CounsellorsSharon Wilkinson (in Hobart) and Nicky Snare (Launceston and Ulverstone) spoke on the subject of Stress Management and Dealing with Emotions. Sharon and Nicky identified the many stressors faced by people with MS and the warning signs of stress. They also gave practical information on stress reduction, including fast “stress-busters” and relaxation techniques. Click here to read more about MS & Stress Management and click here to read more about Stress Management Techniques.
The evaluations from all three days indicated a very high level of satisfaction among those who attended, with many indicating that they would recommend the forum to others. The participants in Ulverstone were even lucky enough to see dolphins pass by the surf club where the seminar was held!
Comments from the participants included:
Excellent – (I) would love to attend another one if it was offered to gain more knowledge.
Very informative
More seminars please!
Very impressive and knowledgeable
Excellent relevant information for MS
(A) particularly good presentation
Very friendly and approachable (speaker)
She knows her stuff!
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