At a local level MS Ireland’s advocacy agenda focusses on the range of individual issues faced by our clients. Our team of Regional Community Workers work closely with people to identify their needs and find solutions.
At a national level MS Ireland’s advocacy agenda is based on significant national policies and decisions that affect the entire MS community.
In 2016, MS Ireland produced an Advocacy Statement which outlined 6 key priority areas for advocacy and campaigning. The 6 key areas in the statement are:
MS Ireland has produced an Advocacy Strategy, which outlines MS Ireland’s advocacy priorities for the lifetime of the current Strategic Plan. In addition this document outlines the activities that will be undertaken to achieve these priorities.
MS Ireland also produces organisational position papers which explain our stance on various issues relating to MS and suggest realistic solutions. You can download our position papers below:
Creating awareness of MS and educating the public and our representatives about MS is a key aspect of advocating. The more people are aware of MS and the issues people with MS face, the more opportunity we have to encourage people to help us change the system.
We also work with various other organisations who have similar advocacy agendas. Below are some of the partnerships, collaborations and working groups we are involved in:
Neurological Alliance of Ireland (NAI)
We work with the NAI and their other member organisations on various issues of common interest, including neurorehabilitation and investment in neurology services. You can read more about NAI’s various campaigns here
Disability Federation of Ireland (DFI)
We participate in various campaigns with DFI including their ‘Disable Inequality’ campaign. Our Information, Advocacy and Research Officer Harriet also works closely with individual staff members in DFI on various issues including employment, housing and assistive technology.
MS Ireland is a partner for the yearly awareness campaign Carers Week. We are also members of Care Alliance’s Research Advisory Group which is an opportunity to identify issues of common interest relating to carers and develop policy and advocacy responses to them.
Medical Research Charities Group (MRCG)
MS Ireland attends board meetings of the MRCG and we also sit on their Communications and Advocacy Working Group. This gives us the chance to feed into MRCG’s policy and advocacy work on issues such as government investment in medical research and development of patient registries.
HSE National Patients Forum
MS Ireland is now a member of the HSE National Patients’ Forum. It is envisaged that this Forum will become the first point of reference for HSE divisions and clinical care programmes when seeking an input from patients/service users in the planning, design and delivery of services and will act as a sounding board for implementation of new and existing national programmes. As a result of membership of the Forum we have been in a position to submit questions directly to members of the HSE senior management team and also make a submission to the Clinical Advisory Group which is looking at the issue of discretionary medical cards.
Community Living Task Group
MS Ireland is a member of the Community Living Task Group which has been set up as part of the strategy to deliver the National Housing Strategy for People with Disabilities. This will be an opportunity for us to feed into policy relating to the provision of accommodation for people with disabilities.
We welcome comments and feedback, please send to Harriet Doig at firstname.lastname@example.org.
Issue 4 is out now! MS Research is a bi-annual research eZine. In each edition we will be sharing the latest updates from scientific and social MS research, from here in Ireland and internationally. In this issue Research prioritisation survey results Research event reports Causes of MS Biotin Physiotherapy Psychology Stem cells Myelin repair ECTRIMS And so much more…. Get in touch Contact Harriet Doig, Information, Advocacy and Research Officer: email email@example.com or call (01) 6781600
New international research published into treatment expectations of people with MS New international research finds that people living with MS prioritise slowing disease progression when considering treatment choices. People with MS want therapies that reduce the number of relapses they suffer and to achieve better control of symptoms like fatigue and pain. The TaP-MS survey, published on 8th December, gathered over 1,000 responses from people with MS in countries ranging from the US, Canada and Australia to Sweden, Germany, France and the UK. It found that as well as seeking to stop disease progression people with MS want more vitality and energy. A new University College London School of Pharmacy report (Greater Expectations: the Future Hopes of People with Multiple Sclerosis, also published last week) highlights the value of early diagnosis and universal access to medicines that people with MS and their doctors judge are most likely to benefit them. It stresses the need for personalised combinations of medical, pharmaceutical, nursing, psychological, social and economic support for people with MS and calls for regular auditing of care delivery standards. Greater Expectations argues that current economic evaluation methods can under-estimate the true value of better MS treatments. Fears about the affordability of high quality health and social care can also be exaggerated. The UCL School of Pharmacy report in addition points to the potential for MS prevention programmes aimed at reducing vitamin D deficiency related risks and cutting smoking and obesity rates amongst teenagers. However, providing disease modifying treatments and investing in ongoing biomedical research are central to further reducing MS related harm. Greater Expectations’ recommendations include: Governments throughout Europe should publicly commit to providing everyone with MS with the treatments that they, their neurologists and other professional advisers judge will offer them maximum benefit; There ought to be open access to reliable, up-to-date, figures on all forms of MS DMT use on a country by country and locality basis; Care funders should provide adequate facilities for the early identification of MS and monitoring treatment outcomes. This includes assuring good access to neurologists and to MRI scanning (Ireland has the lowest number of neurologists per heard in Europe and long waiting times to access MRI) as well as maintaining high quality disease registries; People with MS and organisations representing them have a vital part to play in raising MS care standards, preventing access inequalities and contributing to pharmaceutical literacy Download TaP-MS (Treatment Expectations and Priorities of People with MS) survey Download Greater Expectations: the Future Hopes of People with Multiple Sclerosis Further reading MS Ireland's Time to Act report on the importance of early diagnosis and treatment in MS MS Treatment Decisions - MS Ireland’s guide to making informed decisions about MS treatment options
Many people with multiple sclerosis experience falls, which can have significant consequences for the individual. The MS Research Team at the University of Limerick, led by Professor Susan Coote, have developed a falls prevention programme for people with multiple sclerosis and we would like to assess how suitable and effective the programme is. What do I have to do? The 'Better Balance' programme consists of 12 weeks of twice-weekly classes run by a chartered physiotherapist. The classes will consist of 45 minutes of exercises aimed at improving balance, strength and walking and 45 minutes of education on topics such as fear of falling, task analysis, getting up from the floor, what devices can assist you – these will include group discussions and problem solving. There will also be a home exercise programme provided to each participant. The classes will take place in Limerick and Galway and will be offered in the morning and/or evening depending on the preference of the individuals attending. Beginning in January, interested individuals will be asked to attend an assessment day where a chartered physiotherapist will test your strength, balance, walking and feelings about falls. We will then give you falls diaries to complete for two months. This is like a calendar where you will write down if you had a fall. After these two months, the classes will begin. When the 12 weeks of classes are finished you will again have your strength, balance, walking and feelings about falls assessed and complete another two months of falls diaries to see if the intervention has been successful. After completing the two months of falls diaries you will attend one last assessment with the researcher to assess your strength, balance, walking and feelings about falls. Who can participate? To be eligible to take part you must have multiple sclerosis, be over the age of 18 years, have experienced a fall in the last three months, and be able to walk for 10 metres with or without a walking aid (one stick or one crutch). Get in touch If you would be interested in taking part in this study or have any further questions about the study you can contact the researchers by calling Laura Comber on 086 0231335 or email Laura.firstname.lastname@example.org or Prof. Susan Coote on (061) 234278 or email email@example.com
Letter to Minister Simon Harris regarding ocrelizumab Today, (Monday, 11th December) MS Ireland have written to Minister for Health Simon Harris regarding new medication ocrelizumab, which is the first ever medication to be indicated for primary progressive MS. MS Ireland are asking the Minister to take action to ensure that this medication is made available to people with MS in Ireland as soon as possible. Further reading Download letter to Minister Simon Harris. Information about ocrelizumab Get in touch Questions or comments regarding this letter can be directed to Harriet Doig, Information, Advocacy and Research Officer – firstname.lastname@example.org
Irish life sciences company, Genomics Medicine Ireland (GMI) have announced an important scientific research study aimed at unlocking the mystery of the genetic and lifestyle factors that contribute to MS. Volunteers with MS currently being treated at St. Vincent’s University Hospital, Tallaght Hospital, Cork University Hospital or Altnagelvin Hospital in Derry are invited to participate in the study which aims to identify these factors in order to find better treatments, diagnoses and, ultimately, a cure for MS. GMI also hopes to rollout additional study sites around the country in future. MS Ireland welcomes this exciting new study as an opportunity to further understand the causes and mechanisms of MS, which will hopefully lead to better management and treatment of the disease in the future. Further information on the study is available in the third issue of our research eZine, Interested volunteers should speak with their clinical team at one of the current research sites for more information. Further information: Read the full press release from Genomics Medicine Ireland RTE News
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