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MISSION, VISION, AIMS & VALUES MISSION “To enable and empower people affected by Multiple Sclerosis to live the life of their choice to their fullest potential” VISION MS Ireland has a vision of Irish society where all people affected by MS live positive and active lives in the community AIMS The principal objectives for which MS Ireland exists are: » to facilitate people with MS to control their lives and environment, to live with dignity and participate in the community » to provide support for the families and carers of people with MS » to co-operate with the medical, scientific, social and caring professions to promote scientific research into the cause of, cure for and management of MS, and the alleviation of medical and social symptoms » to exchange and disseminate information relating to MS » to provide an identifiable focal point by developing an efficient, effective and caring organisation to serve the needs of people affected by MS VALUES Supportive “We support individuals whether they are People with Multiple Sclerosis (PwMS), staff or volunteers so that we can work together to fulfil our mission” Transparent “Being open and honest in everything that we do” Informative “Communicate reliable, accurate and useful information” Empowering “Through the provision of information, advocacy and support services we enable people to make informed choices” MS IRELAND ANNUAL REPORT & ACCOUNTS 2019 2 CONTENTS PAGE 4 STAKEHOLDER MAP PAGE 5-8 CHIEF EXECUTIVE & CHAIRPERSON WELCOME PAGE 9 STRATEGIC PRIORITIES PAGE 10-21 ACHIEVING IN SERVICES PAGE 22-28 ACHIEVING IN ADVOCACY PAGE 29-33 ACHIEVING IN RESEARCH PAGE 34-47 ACHIEVING IN ORGANISATIONAL CAPACITY PAGE 48-62 ACHIEVING IN GOVERNANCE & REGULATION MS IRELAND ANNUAL REPORT & ACCOUNTS 2019 3 STAKEHOLDER MAP Health Service Researchers Executive Companies (HSE) Registration Pharmaceutical Office Companies (CRO) MPOWER THO Elected International D E SE N AF Representatives Organisations A F LE EC B MS Ireland T (EMSP, Progressive MS A E D Alliance, MSIF) N Service Members E B O Users Y T Volunteers M E - TR Umbrella TIV A S R NS Government Funders O P Organisations P A P R (National) Departments U E (Education, Environment, S N (NAI, DFI, IPPOSI, MRCG, T Care Alliance) Health, Transport, Social Carers People living Board Protection, Revenue) with Multiple Sclerosis G Staff I N Donors L Hospital N I Suppliers F R A I O E Consultants/ T T O R M W N O Nurses L A P E TI M T I VE - E V Family Voluntary O E P Members Branches T T H S E E L Fundraisers L Non-Profit Allied Health IF L E FU O R Organisations Professionals F EI THE TH (AHP’s) IR CHOICE TO Health Charities Information & Regulatory Quality Authority Authority (HIQA) (CRA) Media Academic Institutions The Multiple Sclerosis Society of Ireland, 80 Northumberland Road, Dublin 4 T: (01) 678 1600 | MS Info Line: 1850 233 233 MS IRELAND ANNUAL REPORT & ACCOUNTS 2019 E: [email protected] | W: ms-society.ie | CHY No:4 05365 CRA: 20007867 | CRN: 296573 WORKING TOGETHER CHIEF EXECUTIVE & CHAIRPERSON WELCOME The Multiple Sclerosis Society of Ireland is the only national organisation providing information, support and advocacy services to the MS community. We work with people with MS, their families and carers and a range of key stakeholders including health professionals, students and others interested in or concerned about MS to ensure that we meet our goals. We are delighted to welcome you to a review of MS Ireland’s activities and services throughout 2019. While we continue to operate in a challenging environment with restrictions on funding, nevertheless, 2019 was an exciting and thoroughly encouraging year. MS Ireland’s dedicated team of staff and volunteers throughout the country have remained as steadfast as ever in their determination, have achieved a great deal, and have continued to work on behalf of people affected by MS in Ireland. This report will highlight and celebrate the successes, achievements and challenges that the organisation has faced over the last 12 months. We continued working with the Neurological for a medical card. This was a recommendation Alliance of Ireland (NAI) and its members made in the ‘Make Work Pay’ report that MS on neurorehabilitation. In February 2019, the Ireland was involved in. National Neuro-rehabilitation Implementation Strategy was published. This strategy We were lucky to have been given our very own encompassed a ten-step plan to develop neuro- ‘MS House’, which was kindly donated to us by rehabilitation services in Ireland over a three-year Merck pharmaceuticals. The house, which was a period which MS Ireland contributed to. portable demonstration unit, allowed people to experience first-hand some of the symptoms and Throughout the year, we continued our work challenges that people living with MS may face, with the Disability Federation of Ireland (DFI), even as they go about their daily tasks in their who advocate on behalf of people living with own homes. The MS house was brought to some disabilities. The highlight of 2019 was an event of our large events throughout the country, such held in DFI offices with Minister for Health Simon as our national conference in Limerick and our Harris and Minister of State for Disability Issues Care Centre in Dublin on World MS Day, and it Finian McGrath, in relation to an announcement of received a fantastic response from our community. an increase in the earnings disregard for people in receipt of disability allowance who are applying MS IRELAND ANNUAL REPORT & ACCOUNTS 2019 5 CHIEF EXECUTIVE & CHAIRPERSON WELCOME In 2019, we were also delighted to launch our Novartis and Ipsos MRBI, in which over 1,000 new website www.ms-society.ie. Our old website members of the pubic were asked questions on felt a bit stale as it had remained relatively all things MS-related, testing their knowledge of unchanged for over 10 years, so, it was long the condition. The survey brought some interesting overdue a refresh! The website project took over results, with 44% of the population having either a year to complete, and involved several months a poor or a limited understanding of MS, while of meticulous research, planning, and content 1 in 3 people claimed to have a friend or family creation involving the whole organisation. Our member living with MS. The results from the survey website is an extremely vital information source for were used to shape our strategic plan. people living with MS, their friends, families and carers, and is also used by our brilliant fundraisers In February, we were delighted to learn the news to sign up for our various campaigns. The new that the famed Irish band Stockton’s Wing had website has made fundraising easier with new reunited and announced both a new tour and payment options for our donors and increased single, ‘We Had It All’. The band kindly decided functionality while the website is fully optimised for to donate all proceeds from the sale of their new all screens , phones and tablets. We really look single to MS Ireland, and also launched the track forward to seeing how our new site grows and at a really special event in our National MS Care develops in the digital age. Centre. On the day, the staff and residents were treated to some brilliant live performances by the Last year, we also carried out our first national band and special guest Finbarr Furey in what was survey of the general public on their awareness a truly memorable afternoon. The band toured and understanding of Multiple Sclerosis. This throughout Ireland in 2019, promoting MS Ireland survey was carried out in partnership with along the way. MS IRELAND ANNUAL REPORT & ACCOUNTS 2019 6 CHIEF EXECUTIVE & CHAIRPERSON WELCOME The MS Information Line, MS Care Centre and Our fundraising team celebrated the 32nd year of our regional services continued to be very busy, our flagship fundraiser the MS Readathon, which providing vital support, information and services was launched by Lucy Kennedy and star pupils to the MS community despite having very from John Scottus primary school at the National limited resources. World MS Day 2019 was a Museum of Ireland. In 2019, over 349 schools great success, with our team using the theme of took part in the Readathon, with over 10,400 ‘visibility’ and the hashtag #MyinvisilbeMS. The readers raising a grand total of €350,000. Some Invisible MS campaign concentrated on raising other fundraising activities included skydives, awareness of the invisible symptoms of MS and treks, the ever-popular Women’s Mini Marathon, the unseen impact MS can have on a person’s and our abseil challenge, amongst many other quality of life. exiting campaigns. In 2019, we were delighted to continue our exciting partnership with the Leinster After the overwhelming success of last year’s Rugby team. In both April and December, we had inaugural event, we held a second MS Explored 2 match day takeovers at the RDS. MS Ireland event in October, which was created for the volunteers where on hand around the grounds of interests of younger people living with Multiple the RDS.