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Latest News

The MS Grieving Process: Denial and Isolation

This week Willeke van Eeckhoutte delves into the universal experience of grieving after being diagnosed with multiple sclerosis. From the ever-popular denial to the stories we tell ourselves and to being present in your daily life, read on to discover how she found her way forward…. Nothing is as numbing to the soul as being diagnosed with an incurable illness like MS. When that illness is also progressive and affects your brain, spinal cord and optic nerves, you can safely call it a double whammy...and a bit! In 2002 I moved to Ireland, the country of my dreams. At work, strong friendships were formed from the get-go and family members visited regularly. I was also studying for a degree in Psychology and when I had time to spare, I travelled around Ireland during weekends and holidays. Life was hectic and good. Fast-forward to 2005. Five months after experiencing my first MS symptoms, I stepped into A&E with excruciating facial pain and fatigue. These symptoms invariably marred my days- there was no number a pain severity scale. My diagnosis followed soon after... it still feels as if it happened yesterday. I remember what I wore, what I said, what I forgot to ask... as well as staring in my neurologist’s eyes looking for reassurance. I also remember standing in the hallway outside the MS clinic, texting everyone, saying “I am OK! It’s MS but I am OK!” Denial had arrived. “The illness is mine, but the tragedy is theirs.” Third Star, 2010 Denial set in almost instantly. The visceral impact I thought would happen during the MS clinic, didn’t. When my neurologist said I would have to change my lifestyle, I thought, “What an odd thing to say to someone who just changed her lifestyle when I moved to Ireland.” “No can do!” I said afterwards to the friend who went to the hospital with me—and who I conveniently forgot to take into the consultation room with me. She later dragged me off to a fancy restaurant because in her own words, “I was so in denial!” Not facing up to the truth as a coping mechanism prevented me from going off the rails that day, so much so I was talking about the ‘D-thing’ in quite a matter-of-fact way. Family and friends were asking if I was OK as the lack of tears puzzled them. I asked them in return if they were OK because they seemed to make so much more of the diagnosis than I was. When I eventually went to bed that night, my thoughts were fragmented and skewed. I was happier knowing what was causing the maddening facial pain and relentless fatigue rather than being sad about the difficult journey ahead of me. I didn’t see the need to quit my job nor the urgency to throw my life around again. This was a stance I eventually had to review 4.5 years post-diagnosis. This was diagnosis-denial 1-on-1 For about five weeks, I said “I’m fine!” Non-acceptance would intervene when new symptoms arrived and trigeminal neuralgia went up a notch. It stopped me from thinking about all the implications of such a harsh diagnosis. Before denial dissipated, I still had a litany of questions that required answers I couldn’t find. I could be forgiven for not being even remotely aware that my body was in a slow process of relinquishing power and control? Did those glimmering lesions on my brain show up one day fully formed? Why, after just 2.5 years, did MS have to attack the life I had dreamt of? Please don’t tell me family and friends will walk out of my life because I’m “just not the same anymore”? Have I just lost the best part about myself? All the above went unanswered because the time and effort spent on finding the right answers by being negative were more energy-sapping than being positive was. Interferon side effects helped drip-feed reality into my consciousness. Its numbing effect lost its potency, but I finally understood that being in denial is the opposite of having hope. Hope was where I was headed and hope is where I live to this day. Check out Willeke’s blog Ireland, MS and Me
Call For New Board Members

Apply now to become a Director We are currently seeking candidates including candidates with MS research or community development experience 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. Nominations of retiring Board members seeking re-election must be submitted to the Nominations Committee. Other nominations may be submitted either directly to the Nominations Committee, or alternatively, under the provisions of Article 56 of MS Ireland’s Constitution, nominations may also be submitted directly to the Registered Office (MS Ireland’s National Office, 80 Northumberland Road, Dublin 4 D04 T856) and marked for the attention of the Company Secretary. The Nominating Committee will review all nominations, except those submitted to the Company Secretary under Article 56, and will recommend to the Board candidates to go forward for election by the Members at the AGM. Any Member nominated via Article 56 will have their candidacy put before the Members at the AGM. The Nominating Committee will take into account the range of skills necessary for board membership and where possible, the geographical spread, the gender balance, the experience and the qualifications of the candidates. All candidates must be in compliance with the requirements for Directors as set out in the Companies Act 2014, the Charities Act 2009 and MS Ireland’s Constitution and will be asked to sign a declaration to that effect. The Nominations Committee, on behalf of the Board, needs to be satisfied that no candidate, who legally cannot serve as a Board member, or who has been disqualified or restricted from being a Board member, is put before the Members at the AGM. Closing date for receipt of applications Applicants, wishing to apply for a position on the Board in September 2019, are invited to submit their application form by 5pm on Friday, 31st May 2019.
Notice of 2019 Annual General Meeting

20th Annual General Meeting (59th AGM since MS Ireland’s foundation) Dear Member, In an effort to reduce costs and with the passing of our Constitution in 2016, we are now able to send AGM notices to you by email. However, we need your consent that you will access the accompanying AGM financial documentation on our website instead of by post. We will be contacting you by email or phone in the coming weeks to seek your agreement on this and to get your email address. Alternatively please complete the attached slip and return to Alice McKeon, MS Ireland, National Office, 80 Northumberland Road, Dublin 4.D04 T856 We would like to thank those members who have already consented to accessing the AGM financial documentation on our website. The AGM legal notice will be sent to each member by email (where we have an email address for you) or by post along with the next issue of MS News. The Annual General Meeting of the Multiple Sclerosis Society of Ireland, at which Board members are elected, normally takes place on the same weekend as the annual conference which this year is scheduled to take place on Saturday, 21st September in the Radisson Blu Hotel, Limerick (time to be confirmed). The results of the vote for the board vacancies and motions, if any, plus the council’s nomination to the board will be announced at the AGM. The procedures for motions and board nominations are listed hereunder. Every registered member is entitled to a vote. For those unable to attend the AGM, proxy papers will be available on our website three weeks prior to the AGM and must be returned to National Office, MS Ireland, 80 Northumberland Rd, Dublin 4 D04 T856 before 5pm on Thursday, 19th September 2019. Ava Battles Company Secretary Motions Any member or branch may forward a motion to the Governance Committee who will decide on their acceptability for putting before the AGM. Closing date for receipt of motions is Friday, 16th August 2019. Call for Board Members We are currently seeking candidates including candidates with MS research or community development experience 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. Nominations of retiring Board members seeking re-election must be submitted to the Nominations Committee. Other nominations may be submitted either directly to the Nominations Committee, or alternatively, under the provisions of Article 56 of MS Ireland’s Constitution, nominations may also be submitted directly to the Registered Office (MS Ireland’s National Office, 80 Northumberland Road, Dublin 4 D04 T856) and marked for the attention of the Company Secretary. The Nominating Committee will review all nominations, except those submitted to the Company Secretary under Article 56, and will recommend to the Board candidates to go forward for election by the Members at the AGM. Any Member nominated via Article 56 will have their candidacy put before the Members at the AGM. The Nominating Committee will take into account the range of skills necessary for board membership and where possible, the geographical spread, the gender balance, the experience and the qualifications of the candidates. All candidates must be in compliance with the requirements for Directors as set out in the Companies Act 2014, the Charities Act 2009 and MS Ireland’s Constitution and will be asked to sign a declaration to that effect. The Nominations Committee, on behalf of the Board, needs to be satisfied that no candidate, who legally cannot serve as a Board member, or who has been disqualified or restricted from being a Board member, is put before the Members at the AGM. Closing date for receipt of applications Applicants, wishing to apply for a position on the Board in September 2019, are invited to submit their application form by 5pm on Friday, 31st May 2019.
He Said / She Said MS

This week we get to share in a conversation between two MS and Me bloggers, Fergal Hughes and Willeke van Eeckhoutte. Read on for their personal take on some of the issues MS brings to their lives. Life. It's tough. Life with MS is tougher than life without MS of course. That said, I doubt that any of us MSers would say our life is tougher than someone else’s...anyone else's, MS or no MS! “Walk a mile in someone else’s shoes” and all that. Still, MS does have more than its fair share of negative points and it gives us more than our fair share of ‘bad days’. With our new friendship, we (Willeke van Eeckhoutte and Fergal Hughes) find we enjoy convincing each other that it’s not all bad and that every cloud has a silver lining. REDUCED CAPABILITIES WvE: Life with MS put a big exclamation mark in my life... and I wasn’t having it! No more hillwalking or thinking of chasing cows in the middle of nowhere only to realise there is a bull just 150 metres ahead of me! FH: Even though some capabilities may have been taken from you, you just need to remind yourself that you can still do what you can do and, well, you'll keep doing it. The goalposts may have been moved – personally, what I now consider to be a major achievement is certainly different to what it was some years ago – but I’m pretty sure you have the confidence and strength to deal with it and adapt. CONCENTRATION FH: Me, I work as a software engineer. This is both brilliant and not so brilliant. My job requires that I sit down for 8 hours a day. This means there’s minimal call for me to be physical but it also means I get minimum chance to be mobile or to work the muscles. Also, my mind has to constantly be in tip-top condition … and with MS that can be a struggle. WvE: My experience is that lately, it seems that my concentration and memory have gone to tatters. My prospective memory especially has led to awkward situations because I agree to do certain tasks, but then I can’t remember that I had to remember to perform that task. The intention is there and unless I sticky-tape notes to every wall of the house, I often find myself apologising. FATIGUE WvE: This is no joke. It takes 100% true grit trying to stay awake for five minutes once I put my head on my pillow. Can you imagine having a relationship like this? I have to watch episodes of my favourite shows five or six times to see the whole 45-minute program! What’s your secret, Fergal? FH: Combatting fatigue is no easy matter, Willeke. I’ve found that a regular schedule for going to bed at a particular time every evening and getting up at roughly the same time every morning helps me … as long as I stick to it! As long as I give my body and mind the best possible chance, the closer to a ‘normal life’ I get. MY FUTURE FH: I'm a worrier. It's alright saying I live in the 'here and now’ but shouldn't I at least consider the worst possible future … so I'll be prepared for it if it did happen. WvE: As a great philosopher once said, ‘Don’t worry, be happy’. Kidding. But hey, always remember, you can’t control the future. You can maybe have an effect on today and this week but let the long-term future take care of itself. A BURDEN ON OTHERS WvE: I feel shut out when people tell me I don’t need to worry about certain news, that I have enough on my mind already. I tell them again and again that they don’t need to worry about what I live with, but I cannot convince them. Backup or tips needed here, Fergal! FH: No one wants to feel like a burden on family or friends. But come on, Willeke, we can’t control how others feel. And anyway, we might be wrong! I KNEW I WAS DEPRESSED BUT WAS AFRAID OF REACHING OUT FH: I waited too long to get help and felt there wasn’t much support available in my community. When I eventually found a therapist, it was expensive enough for the amount of time I was given. WvE: I’m sorry to hear that Fergal. People with MS need more readily available access to mental health services. Once I opened up, I felt relief knowing I was not the only one. Therapists might have group sessions also for ‘people with chronic illnesses’.
Sláintecare Action Plan 2019

Minister for Health publishes Sláintecare Action Plan 2019 outlining approach for delivery of Sláintecare and milestones to be achieved by the end of the year Minister for Health Simon Harris TD has today published the Sláintecare Action Plan 2019, outlining the project management structures and governance approach for the 10-year implementation of Sláintecare and the actions and milestones for 2019. The Action Plan, developed by the Sláintecare Programme Implementation Office, is a fundamental enabler in the delivery of the Sláintecare vision for reformed health and social care services in Ireland. Minister Harris said "Sláintecare will deliver a health and social care service that meets the needs of our population and attracts and retains the very best healthcare professionals, managers and staff. Our core objective is to shift the majority of care from the acute to the community setting to bring care closer to home for service users. “This will help us reduce waiting lists and waiting times and ultimately meet our goal of improving population health. Over a ten-year period, Sláintecare will deliver a service that offers the right care, in the right place, at the right time. “To implement this ambitious reform programme, it is essential that we establish a clear, accountable and structured annual plan for delivery, and the 2019 Action Plan that I am publishing today is just that. It is a detailed and comprehensive plan for 2019 which firmly establishes a programmatic approach to the delivery of the Sláintecare Strategy. “As the Action Plan sets out, considerable work is already underway to deliver on the commitments made in the Sláintecare Implementation Strategy. Earlier this year, my Department announced the appointment of eight new members of the HSE Board, one of the key recommendations of Sláintecare. Enhancing governance and accountability in the health and social care service is integral to Sláintecare reform and the new HSE Board will work with the HSE to implement Sláintecare.” Executive Director of the Sláintecare Programme Implementation Office, Laura Magahy said “The 2019 Action Plan uses a Citizen Care Masterplan Framework to underpin the project delivery of the very ambitious Sláintecare Strategy. It is essential that all parts of the health and social care system are involved in Sláintecare as these actions will be delivered through and with these partners. "2019 will see us putting in place some essential building blocks to ensure that by the end of the reform programme, the right care is being delivered in the right place, at the right time.” Anne O’Connor, Interim Director General of the HSE, said “This Plan sets out the key activities that will guide the reform of the health services in 2019 and beyond. The HSE looks forward to working in partnership with our stakeholders in order to deliver on these important actions.” The publication of the Action Plan follows the second meeting of the Sláintecare Implementation Advisory Council (SIAC), chaired by Dr Tom Keane, which met on Wednesday 27th February. Sláintecare Implementation Advisory Council Chair, Dr Tom Keane, said: “This Action Plan is deeply rooted in the original vision set out by the Joint Oireachtas Committee on the Future of Healthcare, and one which has been informed by stakeholders from across the health and social care service. "As I know from experience, implementation does not happen overnight. However, with the keen focus on structured delivery that this Action Plan presents, I am confident that we have identified and sequenced the first essential steps needed to create the foundations for an Irish health and social care service that, in due course, will provide the right service, in the right place, at the right time”. The key Sláintecare actions to be delivered in 2019 include the following: Workstream 1: Service Re-design and Supporting Infrastructure Scale projects to improve the management of chronic disease and older people’s services so that care can be provided at or close to home Plan bed and diagnostic capacity to meet the needs of our growing population Prototype a Citizen Health Portal, continue EHR roll-out and explore scale-up of telehealth solutions Workstream 2: Safe Care, Coordinated Governance and Value for Money Define and agree a new organisational and operational structure for the future reconfigured health and social care service, including respective roles of the Department of Health, the HSE and regional and community organisations Develop a roadmap and policy proposals for how to provide universal services at no or low cost to the patient/service user Review the recommendations from the Independent Review examining the removal of private practice from public acute hospitals Progress the Patient Safety Bill Workstream 3: Teams of the Future Engage with the education sector and training bodies to agree new ways of training multidisciplinary teams Implement the recommendations in the Strategic Review of Medical Training and Career Structures Identify projects which support staff to work to the full scope of their licence to ensure that patients are seen at the lowest level of complexity possible Workstream 4: Sharing Progress Commence the development of an evaluation and reporting framework Launch the €20m Sláintecare Integration Fund for 2019 to test, learn from and support the implementation of new models of integrated care Roll-out a Citizen and Staff Engagement and Empowerment Programme which will be scaled and sustained throughout the 10-year implementation period Read the full Sláintecare Action Plan 2019 on the Department of Health website.

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The MS Grieving Process: Denial and Isolation

Call For New Board Members

Notice of 2019 Annual General Meeting

He Said / She Said MS

Sláintecare Action Plan 2019

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