MULTIPLE SCLEROSIS SOCIETY OF THE ACT ANNUAL REPORT 2006 – 2007 MULTIPLE SCLEROSIS SOCIETY OF THE ACTT ANNUAL REPORT 2006 – 2007 HONORARY LIFE MEMBERS William Penson Pam Judge Lady Enid Cummings* Miss Gloria McKerrow* Sir John Overall CBE, MC & Bar* Daphne Hargreaves CONTENTS John Mann 0 Honorary Life Members 10 Chief Executive Officer’s Report Dianne Moir 2 Multiple Sclerosis (MS) at a Glance 11 Sharon Eacott: MS ACT Advocate William Gibson* 3 Client Survey 2006 Summary 12 Outreach Services Report Margaret Heap 4 Values 13 Fundraising and Marketing Report Brian Adams 5 Organisational Structure 15 MS Readathon ADM Alan Beaumont AC, RAN (Rtd)* 6 Our Governance 16 Volunteers Mark Goodall 7 President’s Report 17 MSRA Report on MS Research Cover Photos: 8 Treasurer’s Report 18 Financial Report Fun Run Walk 2006 walkers, MS Advocate Dr Mary Webb, * denotes deceased MS Readathon 2006 9 Mary Webb: MS ACT Advocate 35 Sponsors and Supporters CLIENT AND MEMBER MS IN AUSTRALIA: SURVEY SUMMARY AT A GLANCE OCTOBER 2006 Prevalence • Australians with MS pay $160 million Carers There were 159 respondents included in The most common ways to manage 83% always and 12% mostly feel treated per year out of their own pockets the analysis, 95% with MS and 4% carers, impacting symptoms were rest (30%) with care and respect when contacted • In 2005 16,080 people • Informal carers provide an average in health costs partners and family members. and medication (21%). by the MSS. No one disagreed with had MS in Australia 12.3 hours a week to people with MS this statement. 95% are happy to make QLD: 2321; NSW: 4555; • The cost of replacement care is contact with the MSS as the need arises, VIC: 5087: TAS: 658; Employment The ratio of male to female respondents The most common sources of advice on $260 million (43% of direct cost of MS) and 30% are managing their MS so did SA: 1278; NT:38; was 1 to 3.6. The average age was symptom management were doctor (26%) • Lower rate of full time employment not contact in the last year. WA: 1645; ACT: 500 50 years (range 25-72), age at diagnosis and neurologist. 64% see a GP for MS, than the Australian population Private Health Insurance was 39 years and years since diagnosis with an average of 5 visits in the last year. • 75% are women (19% v 38%) was 11 years. One quarter would like the MS Society to • 70% of people with MS hold private • 87% are of working age • 80% of people with MS lose their develop social activities. health insurance despite the rising 85% see a neurologist for MS, with job within 10 years of diagnosis • Average age of diagnosis is 30 years costs and lower incomes – compared 51% were unemployed and 49% an average of 2 visits in the last year. • Prevalence in Tasmania 8-10 times • 30% higher representation in to 43% of other Australians employed. The employed work on average 59% find the Wall of Fame of interest, with part time employment 32 hours per week.. these respondents more likely to be female that of North Queensland along • Current products are not suitable in all 25% had been to hospital for MS and have low impact MS. 21% do not find the latitude gradient • Higher occupational skill level than cases for people with chronic illness in the last year. it of interest, but only 5% indicated they • Prevalence of MS increasing by the Australian population The majority (90%) lives in ACT, and would prefer it to be removed. nearly 7% to 2010 when it may 8% live in NSW. • 48% of people with MS earn less Research Only 10% were aware of the home increase to 10% pa than $300 per week compared with medicines review program, but 44% 39% of the Australian population • Current research investment in 18% have trouble getting to the MS were interested in more information. 84% receive sufficient information about MSS services. The most common source Symptoms & Impacts • Annual lost productivity is estimated Australia is 30% below average Society and 13% have trouble getting disease spending was phone the MSS (49%) at $160 million to appointments and service providers. Physiotherapy was the service most • Extreme fatigue and chronic pain • Main Australian research into The majority (72%) never use wheelchair referred (14%). It also had the most MS concentrates on Genetics, accessible taxis. 82% have ready access to the internet, • Impaired mobility and vision Care services interest (35%) followed by dietician epidemiology, Genetics and and 53% have visited the MSS website. • High co-morbidity with depression (32%) and podiatrist (29%). • 20% of all dollars spent in health neurobiology including adult stem When asked how much MS affects daily Of those who have visited, 73% were • Relationship and services in Australia on MS are spent cell research and proteomics satisfied with the information provided. activities, 37% said more than a little but 72% engage in regular exercise. The employment problems in the aged care system (study of cell chemistry) not a lot, followed by a little (30%), a lot majority had made changes to diet (68%) • High costs of chronic illness – • There is difficulty accessing basic • New treatments are coming through (21%) and not at all (9%). The categories and exercise (64%), half (51%) changed 87% read the Swag newsletter, with 45% can be as high as 20% of income Health and Community Care (HACC) for clinical trials – despite being were combined for subsequent analysis, dietary supplementation and over a quarter mostly happy, 25% always happy, 13% spent on health disability services recognised for 160 years, only 2 with 59% having high impact MS and 39% (27%) changed to meditation. About a sometimes happy and 1% not happy with treatments have been released since with low impact MS. third were interested in more information the current standard. The aspect with the most “very important” ratings was research Burden of disease Welfare 1998. Another treatment is now on these aspects. available overseas (Tysabri) and Those with high impact MS were older, updates (47%). 72% were interested in • MS costs Australia $2 billion per year • 40% of working age people with has been approved for use in Australia; themed issues of Swag, and 74% were have had MS for more years, more likely 23% need services they don’t receive, MS are recipients of disability however, it first needs to be added to happy with the title Swag. 86% agree that • Loss of productivity costs to be male, unemployed, and have trouble and 15% need more access to services support pension - equating to the PBS (anticipated in November the current frequency is appropriate. $150 million per year with accessibility. they already receive. 5% Australian Population 2007). A raft of potential treatments is • The replacement cost of informal in phase 2 and 3 clinical trials. 82% indicated they are financial members care provided to Australians with 56% have someone who supports them The most common sources of additional of the MS Society MS is $250 million with daily activities or care needs. These support were community services (9%), respondents were significantly older, have household help (8%) and carers (7%). had MS for more years and more likely to The services with the highest proportion have high impact MS. of “very satisfied” ratings were 85% feel the MS Society is providing immunotherapy training (88%), remedial Prevalence of MS in the ACT is around them with a satisfactory service. The 98 per 100,000, this compares to 71 Fatigue was the most common symptom massage therapy (79%) and support average satisfaction rating was 8 out of groups (76%) for NSW, 100 for Victoria and 136 for needing information or support (68%), 10. MSS has met their needs with the Tasmania. The cooler the weather, the and was also the most impacting progression of MS, the most common higher the incidence of MS. symptom (56%). response was well (42%) followed by very well (33%) and not very well (8%). 2 © 2006 Tribe Research P|L (www.triberesearch.com.au | 02 9264 4432) (All rights reserved) ORGANISATIONAL VALUES OF MULTIPLE STRUCTURE The Multiple Sclerosis Society of the ACT (MS ACT) is one of six State-based MS ACT Societies that operate as interdependent SCLEROSIS divisions of a nationwide network that STAFF exists to support and provide services to people with MS, their families and carers, Chief Executive Officer Fundraising Team SOCIETY and to fund research into the disease. Each MS Society operates under the umbrella Robbie Costmeyer, P Eng., Peter Hurford, from 30th Apr 2007. of Multiple Sclerosis Australia. (MSA) Dip Mech Eng, M Mgt Economics Glenda Tow, BA, Grad Dip Lib., OF THE ACT until 4th Jan 2007 The ultimate goal of MSA, through its Outreach Team Simon Srbovski, from 19th Feb 2007 research arm, Multiple Sclerosis Research Samantha Cursley, B Sc., B A., Catherine New, BA, Dip of Prof Writing, Australia (MSRA), is to help eliminate Grad Dip Appl Psychology, until 8th Feb 2007. MS by funding research into the nature, Care and Compassion: Grad Dip Edu., from 5th March 2007. Michael Nasser, Dip Marketing, causes, treatment, diagnosis and Sue Donaldson, B App Sc (OT), 13th Dec 2006 to 25th Mar 2007 Commitment to providing care and management of the disease. Grad. Dip. Community Counselling, support for our clients, each other Teena Cotterill, until 18 Dec 2006. until 26th Feb 2007. and the community we serve. MSA is governed by a Board that meets Helena Paul, RN quarterly and an Executive Committee MS Readathon Coordinator Sue Ellerman, Respect: (EXCO) of three which meets on a more Simon O’Dea, B Communications and frequent basis to manage the more urgent B Applied Sc (Health Education) The objective, unbiased consideration Public Relations, from 21st Mar 2007.