Working towards a brighter future

Today (May 30th) is World MS day (WMSD), an annual global awareness raising campaign for multiple sclerosis - a debilitating disease which affects the lives of more than two million people around the world. In the run-up to WMSD, patient advocacy groups from twenty countries met last weekend in Zurich, Switzerland (May 24th) at a unique Patient Summit which brought together MS societies, activists, MS bloggers and social media experts to learn from each other about how to communicate the challenges of living and working with MS to a wider audience. MS is the leading cause of neurological disability among young and middle-aged adults. Symptoms usually start between the ages of 25 and 31 - a time when adult life is just beginning, when careers are being launched and when plans are being laid for the future. One of the most devastating consequences of MS in this relatively young population is unemployment. A key objective of the Patient Summit was to debate how best to convince employers and policy makers that helping people with MS to remain actively employed is good for both patients and for society. There is growing evidence that helping people with MS continue to work can play a vital role in their well-being,, said Christoph Thalheim, Deputy CEO & Director of External Affairs for the European MS Platform (EMSP) which represents the interests of 38 MS Societies and more than half a million people affected by MS. Mr Thalheim presented poignant photographs and stories collected as part of the 'UNDER PRESSURE' exhibition, which launched last month at the European Parliament, Brussels. The moving images of patients and their carers together with their personal testimonies vividly demonstrate how national health and social policies influence - for better or worse - those living with MS. Further MS testimonies are being collected as part of World MS Day, which this year is built around the '1000 Faces of MS' concept. This puts people with MS at the heart of the campaign. People living with and affected by MS can create an on-line 'postcard' to share their story with the world. At the Zurich meeting, Mr Thalheim said that although progress has been made in improving MS care, many EU countries still have far to go. The EMSP has been tracking the wide disparities in MS care which currently exist between eleven EU countries - such as the continuing shortage of neurologists in Ireland, inconsistent access to treatment in the UK, low access to medication in Belarus and Poland. In Greece the MS Society has made many gains, but fears these may lost due to the current economic crisis, he said. Dr Christoph Lotter Vice Director of the Swiss MS Society emphasised the importance of people with MS remaining professionally active. "Two and half million people are affected with MS worldwide, with 500,000 people in Europe. As 70% of MS cases occur between the ages of 20 and 40 years, most people with MS are in employment at diagnosis." He added that retaining employees, even on a part-time basis can result in substantial savings for society, employers and insurance companies. Dr Erich Knülle, Specialist in internal medicine and occupational health described how a 'top-down' approach has helped the Ford Motor Company, Germany, shift the focus of employment policy 'from disability to ability'. Offering employees help by reducing or adapting their work hours and modifying their work environment has helped reintegrate 300 out of 500 chronically ill employees and slashed rates of sick leave amongst these 500 from 25% to the average for the plant as a whole. Dr Stefan Schmitt, Director of Global Advocacy, Novartis Pharma AG, said that Novartis had learned much from Ford's initiative and had launched a pilot scheme for employees with MS at the Novartis Rhine Valley Sites Social media is playing growing role in MS awareness, said Christoph Bornschein, CEO of the German social media/digital brand communication consultancy TLGG. He estimates that of Facebook's 842 million plus users, more than 300,000 are a member of an MS group or pages and are actively discussing their MS. There are also a growing number of mobile apps designed to help people with MS manage their illness. MS Groups increasingly are leveraging social media. George Pepper and Rebecca Aldam described the work of Shift.ms a UK-based social network for young people with MS. Employment issues are a recurring theme on the site; "These concern stress, work/life balance, disclosure (to tell or not to tell employers), the attitude of employers and colleagues, rights at work, and how symptoms and relapses affect your work," said Rebecca. Isabella Baroni of AISM (Associazione Italiana Sclerosi Multipla) said that the Italian MS society starting using social media in 2008 and had found it offered fantastic opportunities to build relationships with everyone touched by MS - patients, their families, volunteers, health care professionals and many others.