MS Ireland
Informing, Supporting and Caring for the MS Community
Almost 10,000 young readers expected to take part in the sponsored reading campaign helping people with MS We have launched the 31st MS Readathon, entering a new era for the sponsored reading initiative. We were joined by MS ambassador Jordan Byrne, 23, who is living with MS, charity partner Lei...
Published by MS Readathon Team on Thursday September 06 2018 10:12 AM
Briefing Document and Position Paper on the need for an MS registry in Ireland MS Ireland has produced a Briefing Document and Position Paper on the need to establish an MS Patient Registry in Ireland. The paper outlines: What patient registries are Why registries are important ...
Published by MS Ireland on Monday October 23 2017 09:23 AM
How to get involved We will join with individuals and organisations across the world to mark World MS Day on Wednesday, 31st of May. This is one of the highlights of our year when we come together to celebrate and empower the 9,000 people living with Multiple Sclerosis in Ireland. The them...
Published by MS Ireland on Friday May 05 2017 09:24 AM
Will YOUR photo make our 2017 calendar? Following on from last year's incredibly successful competition where we discovered that there are hundreds of talented photographers across the country, we're delighted to announce that we are on the hunt for images again! We are creating a 2017 calendar...
Published by MS Ireland on Friday July 29 2016 11:32 AM
MS Ireland has been approached by a production company, Tick Tock films, with the following request: “We are putting together a documentary about the legalisation of cannabis for medical use in Ireland. We are reaching out to people with MS in hopes that they can share their story with us....
Published by Tick Tock Production Company on Wednesday July 27 2016 11:23 AM
St Patrick’s Cathedral ‘Lighting up Blue’ for the 10th National Carers Week in Ireland Family Carers will have the opportunity to take part in events in every county this week as the 10th National Carers Week (13–19 June) is launched in Dublin today by Nuala Carey. Nation...
Published by Care Alliance Ireland on Monday June 13 2016 11:01 AM
Apply now to become a Director We are currently seeking candidates to go on to our panel of potential Board members. Members, branches, council, the board and staff may propose candidates. All nominations must be proposed and seconded by members. The nominating committee review the applica...
Published by MS Ireland on Friday March 11 2016 01:46 PM
Care Alliance Ireland launch factsheet for carers As part of National Carers Week 2015, Care Alliance Ireland launched a four-page factsheet on Family Carers in Ireland. The factsheet provides important information pulled from the 2011 Census and other sources. This information is provided in sh...
Published by Care Alliance Ireland on Friday July 03 2015 09:45 AM
MS community shouts out ‘Together we’re stronger than MS’ to announce World MS Day 2015 Multiple Sclerosis Ireland today announced World MS Day 2015, which will take place Wednesday May 27th under the banner ‘Together we’re stronger than MS’. Ireland’s w...
Published by MS Ireland on Friday May 08 2015 04:44 PM
Together we're stronger than MS We will be joining with people and organisations across the world to mark World MS Day on Wednesday, 27th of May. This is one of the highlights of our year when the whole world comes together to celebrate and empower people living with MS. The theme for this year...
Published by MS Ireland on Thursday May 07 2015 09:10 AM
This week, Joan Jordan champions her professional revitalisation and shares with us all the joys of returning to the workforce. Sorry for the spoiler in the title. You already know how this one is going to play out. Girl studies hard and gets a computer science place in Trinity College. Girl works her arse off and builds a nice little life for herself and her family. Girl is winning. Girl firmly believes that bad things happen to other people. She has plans, you see…… Mike Tyson nailed it when he said, “everyone has a plan ‘till they get punched in the mouth.” Next thing- girl is punch drunk and wondering how on earth she got into this position? More importantly, how was she going to get out of it? When the editorial team asked me what they wanted to write about this week, I must say that I felt a bit anxious. I still feel shame over having to throw in the towel and stop working in 2009. I didn’t get formally diagnosed until 2010 and until then, lived with the unsettling conviction that something was really, really, really, wrong with me. I HAD to stop working. End of story. It was destroying me every day. Not knowing what was destroying me made it even worse. People like explanations and I just did not have one to give. I didn’t realise how important having a job was to my standing in society. It’s one thing to stop working as a lifestyle decision – another entirely when you feel forced into it. People ask difficult questions. Social outings and meeting new people became awkward. I also felt terribly guilty about not having my own money. Actually, the story didn’t end there. After chasing a lot of dead ends, I retrained and now work 15 hours a week from home. I do my work in the mornings before cog-fog sets in. My business card says that I am the EUPATI Content Coordinator. I love my job and do not take it for granted for a second. I’m even happy to be back paying taxes! Long story short, it was not easy to get back into gainful employment, but it is possible. If one good thing has out of all I went through when I had to stop working, it’s that I learned more about compassion. Being kind is important (and that includes being kind to yourself). Don’t judge others when you are not standing in their shoes. If you feel that you are stuck in a situation through no fault of your own- seek help. I’m glad I went to Citizens Information to find out what my options were when I had to stop working. Dedicated to MS Without whom this blog would not have been possible.
A Health Research Board funded study called ‘Patients’ Preferences for Health’ are looking for volunteers You are invited to participate in a study which will explore “Patients’ Preferences for Health”. In general, people have preferences of being in one state of health over another. This can often be a preference to have good health over bad, or to be in good health for so long and to be in less well health for a shorter period of time. By asking the public in Ireland to make these decisions or trade-offs we can say something about the general preferences of people in Ireland. Preferences gathered in this way are often used to guide choices around decisions in relation to health and using preferences from the general public is deemed to be a fair way of deciding on how to assign healthcare resources. However, it is likely that a person’s experience of being in a health state will alter their preferences compared against those who are only imagining being in that state. As such, this work will examine the differences between patients with Multiple Sclerosis (MS) valuations of health states, and those of the general population to see if this is actually the case. Before you decide whether you would like to be part of this research study, it is important that you understand why we are carrying out this research and what it will involve. Download participant information Get in touch If you are interested in helping with this study, please contact Dr. Stephen Erskine at erskines@tcd.ie
NCPE report The National Centre for Pharmaco-economics (NCPE) have completed their evaluation of Ocrelizumab for the treatment of adult patients with early primary progressive Multiple Sclerosis (PPMS), and have sent the final report to the HSE CPU. The web summary is now available on the National Centre for Pharmacoeconomics website. >> Read more The NCPE report recommends that ocrelizumab for the treatment of adult patients with early PPMS not be considered for reimbursement. MS Ireland have secured a meeting with the Minister for Health, Simon Harris on October 25th in relation to the issues of access to medicines. Related articles March 2018 >> January 2018 >> Access to Medicines Campaign Handbook >>
Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people. Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many. It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets. People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be. At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer. MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card. Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support. Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease. Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS. It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future. All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us.
Briefing in Leinster House Today, MS Ireland presented the MS Care Centre Business Case to TDs and Senators in Leinster House. We were overwhelmed by the support shown by your local representatives at today's event. In a video released to coincide with the presentation, Mark Mitchell shares why further investment is important and the services offered at the Care Centre. Watch here The MS Care Centre is a state-of-the-art respite facility. Admitting and welcoming 400 people annually, the Care Centre not only provides people living with MS and their caregivers a break but delivers a range of therapeutic services, neurological assessments and social activities. Due to decreased income, the Care Centre only opens 40 weeks per year. MS Ireland are requesting a further €600,000 in annual investment due to the increased demand on the service. This would see the Care Centre open 350 days per year from 2019 and provide an extra 1,128 bed-nights annually. MS Ireland will continue to campaign to secure additional funding to open our respite service 350 days per year. Thank you for contacting your local representatives. Your involvement and action makes a difference. #ISupportMS
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22 October 2018: Group led yoga class for people with MS and family/friends, starts 17th September.
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