MS Ireland
Informing, Supporting and Caring for the MS Community
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The terms MS Society Ireland, Multiple Sclerosis Society of Ireland, MS Ireland, us or we refer to the owner of the website whose registered office is 80 Northumberland Road Dublin 2, Charity Number: 5365, Registration Number in Ireland: 296 573. The term ‘you’ refers to the user or viewer of our website.
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MS Ireland has published our Pre-Budget Submission for 2018. Our key asks are: Investment of €3 million in neurology services Investment of €7 million in neurorehabilitation services Investment of €50 million in community services for people with disabilities €30 million increase for the Housing Adaptation Grant scheme Automatic entitlement to a GP Visit Card for those in receipt of the Long Term Illness Scheme Read our Pre-Budget Submission here. This submission has been prepared by Harriet Doig, Information, Advocacy and Research Officer. Questions and comments can be directed to harrietd@ms-society.ie
and the lucky winners are... The draw for our Annual Summer Raffle took place on Friday, 21st July at our National Office. Taking some time out from her training for the upcoming Women's Rugby World Cup, Jenny Murphy popped into HQ for our Summer Raffle draw. We are delighted to announce this year’s winners: 1st prize: Michelle O’Connor, Dublin 2nd prize: Eilish Boyle, Cork 3rd prize: A. Costello, Galway Congratulations to all our winners and a huge THANK YOU to everyone who supported this year’s Summer Raffle. The funds raised will make a huge difference to services in our Care Centre.
Continual delays in reimbursement of new medications One year ago, the Irish Pharmaceutical Healthcare Association (IPHA) made a Framework Agreement with the Irish government on the pricing and supply of medicines. The agreement had two purposes (1) to save money and (2) to have timely access to medicines in the Irish health services. A year on, there are still serious delays in new medications being made available in Ireland. Ireland currently ranks 16th out of 26 countries in Europe in terms of the number of authorised medicines being made available and a number of medications that have been approved for reimbursement by the HSE are being referred to the Department of Health due to a lack of available funding. Of nine medications currently awaiting approval by the Department of Health, it has been 2½ years on average since the outcome of the HSE’s ‘Rapid Review’ (which is carried out to determine if a full health technology assessment (HTA) to assess the cost-effectiveness of a medication is required). MS Ireland believes that these delays in making new medications available are unacceptable, particularly given the strong scientific evidence that the earlier after diagnosis someone with MS is treated with an appropriate medication, the better their long term outcomes will be. There are some potential new therapies for MS in the pipeline, including two new treatments currently under review by the European Medicines Agency (EMA). If licensed, MS Ireland believes these treatments should be made available to people with MS in Ireland as soon as possible and we call on all parties involved to try and find solutions to the problems with the current systems for medications access. Further reading Read the full press release from IPHA Read MS Ireland’s Briefing Document on the Systems in Ireland for Medications Access and Reimbursement Read MS Ireland’s Time to Act Report on Early Diagnosis and Treatment
This week from the MS & Me archives series - Lucina Russell discusses how words people use to speak about people with MS has an impact on our identity. There’s also mention of dating and road frontage! I’ve always hated labels. As a child, it was the itchy, scratchy ones on the back of new tee-shirts that had to be cut off before wearing them. In later years, it’s the other ‘labels’ that have caused me more discomfort. The labels that stick, that brand you. The ones that are hard to shake off once you have them. Ones like ‘MS Sufferer’. Big label. Huge connotations. I should say that I absolutely and respectfully acknowledge that there are many people with Multiple Sclerosis whose journey with this illness is a lot rockier than mine, who ‘suffer’ more than I. I am conscious of those people particularly when I write this and I understand that they may disagree with me, because their experiences are different than mine and may feel that their rockier road should be recognised as such. However, I write this taking a broad view, thinking of myself and the many people that I have encountered who have MS since my diagnosis. When you apply the ‘MS (or other chronic medical condition) sufferer’ label, you are allowing the label to consume the person, with the individual coming a close second. The media are divils for it. Maybe ‘MS sufferer’ makes a better headline than ‘person with MS’, but in my opinion, it’s neither a useful nor always accurate description. To me, that horrible noun takes away their humanity, their personality and suggests other words like ‘invalid’ ‘victim’ and even ‘martyr’. It’s not how I want my children to speak of me, even if my health deteriorates. The people with MS that I know are citizens, tax payers, parents, lovers, advocates, sisters, brothers, bloggers, daughters, sons, engineers, philosophers, fundraisers, athletes, who also happen to be have a common monkey on their back. And deal with it they do. With courage, dignity, zest, humour and yes, at times, with anger, disillusion, disappointment and fear. While I am on my soap box, the phrase ‘MS patient’ bothers me too. It conjures up images of a person passively nodding in agreement to the words of the Master. Most people I know with MS are very well informed, active and educated participants in the decision making around their wellness and health care plan. In my opinion, a person with MS, or any other illness is only a ‘patient’ when they are in a consultation with, or being treated by their GP, neurologist, or other specialist. Once they walk out of that room, they are back to regular old Citizen Me, getting on with life. Perhaps it would be useful to apply these labels to two personality profiles, one looking for a new job and the other, a date ‘Award-winning civil engineer with 20 years’ experience on large scale international project and Multiple Sclerosis Sufferer seeks exciting new challenge’ or ‘Twenty-something fun loving girl, with ten acres, including road frontage, looking for a man to share her dreams. MS patient’ To me, the ‘award-winning’ engineer and even the much sought-after ‘road frontage’ pales into the background, with the medical condition to the fore, in bright shiny lights. On a number of occasions, I have contacted radio stations and newspapers about their use of the phrase ‘MS sufferer’, to ask them to consider their use of language, but I have yet to receive a response from any of them. That won’t stop me from calling them out about the lazy linguistic choices that put me and other people with MS in badly-labelled boxes. Maybe the words they use don’t really matter to them, but they do to me. For now, I’ll put away my soap box, but in an easily accessible place!
Book your place now MS Ireland will host the annual MS National Conference on Saturday, 23rd September in the Radisson Blu Hotel, Sligo. The theme of this year’s conference is 'Quality of Life' Highlights of the day include: Dr. Orla Gray, Neurologist, Queens Hospital, Belfast Elaine King, IAHIP Psychotherapist Workshops: Pierce Richardson, Disability Federation of Ireland Dr. Sinead Hynes, OT, NUIG William Ryan, Continence Nurse Mary Ananda Shakti – Laughter Yoga Our Annual General Meeting; Council Meeting; National Annual MS Awards; Research results from 'My MS My Needs and Quality of Life will also take place on the day. Get in touch For futher details contact our team: Email western@ms-society.ie or call (091) 768630. Please retrun booking forms by Wedneday, 14th September 2017. First published June 2017
What are the research priorities of the MS Community in Ireland? Have your say!
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