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MS Ireland has become aware that some people with MS have been affected by the recent decision by the HSE to withdraw reimbursement of Versatis medicated plasters for all conditions besides the licensed indication, which is post-shingles pain. Some people with MS have been prescribed this treatment for neuropathic pain. MS Ireland supports an evidence-based approach to treatment and care in MS. Whilst the evidence base for use of Versatis plasters for conditions besides post-shingles pain is limited, a number of people with MS have found that Versatis helps significantly with managing neuropathic pain and therefore has greatly improved their quality of life. People with MS who have been affected by this decision can ask their GP to lodge an appeal on their behalf to continue having the medication covered. MS Ireland also calls on the Government and the HSE to look to develop a fair and transparent system to ensure that this treatment continues to be made available to people with MS for whom it is found to be safe and effective.
Do you have a bucket list? This week for her first blog, Rosie McCormack writes about hers and how she dealt with all the holes in her bucket list post-diagnosis. About six months before the relapse that led to my diagnosis, I was out running and I suddenly became so aware of how lucky I was. The beauty in every single step, the ease of breath. It hit me how quickly it could all be snatched away. I realise now how eerie that premonition - of sorts- feels but that reminder to stay mindful stuck with me on every single run and walk after that. However, it wasn’t until I heard those three words on a sunny afternoon in mid-May that it really hit me how quickly my ever-expanding bucket list could be destroyed. So, only a few hours after receiving my MS diagnosis, I went home, laced up my runners and signed up for the half marathon I’d always talked myself out of…. Oh, and I ordered a pizza and ate A LOT of chocolate! I cherished the time spent training for that half marathon - it gave me the headspace I needed to come to terms with what MS might mean. “MS will not stop me doing the things I love,” was my daily mantra as I fought back against the disease, pounding the pavements as I went. But then it did exactly that. Nine months after completing that beautiful half marathon, I found myself in need of a wheelchair, a stick and at the start of what has since become a life of chronic pain. And yet, as I watched one bucket list wash away, another one formed and started to overflow with ideas. Even in the days I needed a wheelchair to leave the house and never saw myself without it, never mind managing a lap of the park without it, my bucket list was no less extensive. From deciding that the marathon I never got to do would be replaced by a skydive in 2018 (shhh don’t tell my mother!) and accepting the help of a wheelchair to enable me to continue seeing the world - with Alaska and it’s whales and wildlife coming up trumps - to deciding I would one day walk around my favourite park again (and I did!), getting a dog, getting married and choosing to enjoy and to really cherish the beauty of the everyday despite MS and chronic pain. In 2015, my bucket list involved a half marathon. In 2016 it involved just wanting to sit in the park and in 2017 it involved managing a single lap of that park. Because that’s the thing with MS, the bucket list regularly gets reset and that’s okay. You see, each and everyone of us is far more resilient and amazing than we realise. So while MS may seem like a thousand bullet holes through the middle of your bucket list, it’s also the fuel for a far more powerful and beautiful one to come. So, believe in yourself, take a deep breath and get busy planning. Further reading! Rosie has a personal blog where she writes about her life, running and keeping the bucket list overflowing! Check out https://sherunswithms.wordpress.com/
Twenty-nine Irish charities receive donations from The Hospital Saturday Fund MS Ireland was one of twenty-nine Irish charities to receive a donation from The Hospital Saturday Fund at a special reception in Dublin recently. In total, €134,500 was donated to the medical charities and organisations at the event, which was hosted by Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha. Among the beneficiaries was Chronic Pain Ireland which received a donation to help support vital workshops on pain self-management techniques. Cystic Fibrosis received a grant towards their independent living group and DEBRA Ireland’s grant will be used to provide a weekend camp for those with the genetic skin condition EB. Also receiving grants were Fighting Blindness to purchase a RetCam scanner machine and the Irish Motor Neurone Disease Association will use their grant to fund specialised communication aids. A grant was made to Dublin Wicklow Mountain Rescue Team to support their important work as well as the Kevin Bell Repatriation Trust to assist families of those bereaved overseas. Speaking at the reception, The Lord Mayor celebrated the extraordinary work of all the charities receiving donations from the Hospital Saturday Fund. Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha, who nominated St Francis Hospice as his chosen charity, remarked that this donation means that the hospice will now have the benefit of a special therapeutic bath for use by the patients in the specialist palliative care unit and this will provide pain relief and comfort to those patients. Paul Jackson, Chief Executive, Hospital Saturday Fund said: “We are delighted to continue the tradition of supporting many charities in Ireland, many of which are less well-known. The Hospital Saturday Fund is honoured to support the efforts of such deserving charities and help in some way towards the exceptional, tireless work that they do. We are delighted to have increased our grant making funds to €1.4 million in 2018 and this is an increase of 100% over the last five years”. In 2018 the Hospital Saturday Fund will give €1.4m in donations and grants to medical charities for care and research, hospices and hospitals across the UK and Ireland. Assistance will also be given to individuals whose illness or disability has caused financial difficulties. Charities receiving grants at the event: Alzheimer Society of Ireland Aspire - Asperger Syndrome Aspire Ireland Barnardos Republic of Ireland CASA Breakhouse Cheshire Ireland Chronic Pain Ireland Cleft Lip and Palate Association CRY Ireland - Cardiac Risk in the Young, Cystic Fibrosis Ireland DEBRA Ireland Dublin Simon Community Dublin Well Women Centre Dublin Wicklow Mountain Rescue Team Helium Arts Huntington's Disease Association of Ireland Irish Community Rapid Response Irish Motor Neurone Disease Association Kevin Bell Repatriation Trust Lauralynn - Ireland's Children's Hospice Look Good Feel Better Ireland MS Ireland Neurofibromatosis Association of Ireland Oesophageal Cancer Fund Our Lady's Hospice & Care Services Spina Bifida Hydrocephalus Ireland Temple Street Foundation St Francis Hospice (Lord Mayor’s Nominated Charity) Fighting Blindness (Expression of Thanks speech)
MS Ireland has made a Patient Group Submission to the National Centre for Pharmaco-economics regarding Ocrevus (ocrelizumab) Ocrelizumab is first and only approved disease-modifying medicine for people with early primary progressive MS. The medication is currently being assessed by the NCPE to determine if a recommendation will be made to the HSE that it should be reimbursed by the health system in Ireland. This process is expected to take some months. The Patient Group Submission is an important opportunity to make sure that the voice of people with MS is heard as part of this process. Download our submission In December 2017, MS Ireland wrote to the Minister for Health asking that he consider introducing a pilot scheme whereby Ocrevus would be made available to people with primary progressive MS (PPMS) while price negotiations are ongoing. Download MS Ireland's letter MS Ireland awaits a response to this letter. You can help by contacting your local TD, sending them a copy of the letter and asking them to bring it to the attention of the Minister for Health. Make your voice heard lobbying your local TD
This week, Emma Rogan is reminiscing about mornings in a cold drafty boarding school in the Midlands. Read on for her take on the next forty days and forty nights. In my school days I got involved in the Christian Union, a group of young Christians in my school. I got seriously into my Bible and all things God-dy. Every morning, before everyone else in the school was awake and the bustle of hundreds of other children echoed through the drafty old building, I’d sit on the stairs doing Bible study. When considering this piece on Lent, I thought back to those days, reading about the forty days and forty nights Jesus spent in the desert and trying to figure out what was it all about? To be honest, I was a little jealous that Jesus had ALL that time to himself! When I was reflecting on that story, I thought about being in a place without the company of others, without basic necessities among thorny prickly plants? For three days and nights, during a trip to India, myself and a friend went on a camel safari in the Thar Desert. Scorching in the day, the sun beat down on us and freezing in the night, we got tucked up in our sleeping mats. But for people with MS there are always reminders of a desolate place- I’ve never been so alone than on the days and months after my MS diagnosis. The uncertainty, the devastation, the morbid thoughts of a life un-lived and then there was all the choices I had NO clue how to make. MS is my barren desert; that desert represents to me what life is like in the first few months and even years of life with MS. But I eventually walked out of that desert. There are still some thorny parts of me and one of them is distraction from myself. I’m prone to sitting surrounded by books, gleefully sitting alone for hours, absorbed or turning on the radio first thing to get a dose of politics or sitting scrolling, scrolling, scrolling through my Twitter feed. Distraction and denial of what was going on in my ‘real’ life. My phone is always with me, I’m rarely uncontactable and there’s always a source of information (wanted or otherwise), close by. This is really useful for us if we want to be distracted from what really matters and I’ve been distracted from what really matters. In my early life, I learned that Lent was a time to give things up (chocolate, sweets, my Granny’s butterfly buns!) but also a time to make some new habits like being kinder to my siblings or being more helpful. The habit of sitting in the quiet of the early morning is something I’ve returned to in recent years. The habit isn’t easy but the simple process has subtly helped me deal with issues in healthier ways. It helps me deal with vagaries of MS, the depression, the fatigue, the balance issues, the cognitive issues. There have been times when my belief system has been wrung out, left to crisp up in the pounding noise of MRI scanner or when my dignity flowed down the leg of my trousers as my damaged/very sensitive bladder emptied before I could even pretend to be near the facilities. I protect my mornings because it is in this sacred space I connect with my inner strength and power. No matter what is going on in the day, how bad my MS is playing up, when things get too much, I can tap into that peace and strength. The morning time I spend on my own, meditating, reflecting on a piece of writing, has given me greater understanding of myself. I think this is where this Lent thing started. Someone had a great idea to get away from it all, to find peace and to listen to their inner power. For the next forty days, I’ll go with doing something every day that makes my or someone else life, a little bit better. “There is guidance for each of us, and by lowly listening we shall hear the right word... . Place yourself in the middle of the stream of power and wisdom which flows into your life. Then, without effort, you are impelled to truth and to perfect contentment.” Ralph Waldo Emerson. Check out Emma’s blog or get chatting on Twitter
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