MS Ireland was delighted to host the 2013 National Meeting in Galway on the 28th of September. In addition to providing lots of information about aspects of MS we also held our AGM, elected a new board and announced our national award winners.
Dr Susan Coote kicked things off with a presentation about keeping active. She outlined some simple ways to remain as active as possible regardless of ability. Her advice was to start small, stand more than sit and set short-terms goals as well as long term.
Trevis Gleason hosted a panel discussion which covered employment, exercise, being online and volunteering with MS Ireland. Willeke, Grace, Anne-Marie and Mark (all people with MS) spoke about how they approached these subjects.
We were delighted to welcome Professor Alan Thompson to speak about his recent work on progressive forms of MS. Professor Thompson gave an overview of the various pieces of research currently taking place and outlined the future work of the new alliance.
Professor Alan Thompson, Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London
‘Putting Your Priorities First – Driving The Progressive Agenda’: A look at new and exciting research in progressive forms of MS. View presentation here (1 hour 4mins)
Dr Susan Coote, Lecturer, Physiotherapy Department, University of Limerick
‘The Benefits of Being Active’: A practical overview of strategies and resources to remain as active as possible. View presentation here (51mins)
Trevis Gleason hosts a panel discussion covering employment, exercise, being online and volunteering.
The highlight of the day was the presentation of the three national awards. These awards are given to those who demonstrate courage, dedication and great care for those around them. We were delighted to present the 2013 awards to these fantastic women:
MS Person of the Year: Elsie Ryan
Volunteer of the Year: Ronnie Jackson
Carer of the Year: Catherine Carey
Manfred Huschka was re-elected to the Board and Edel O’Kelly joins for the first time. Edel a qualified solicitor, working for a large firm in Dublin. Her mother has MS.
Joe Cahill and Sean Murphy stepped down and we would like to thank them for their diligent and passionate service to the Board of MS Ireland. Sean was and will continue to be a vital volunteer in the Cork City voluntary Branch and Joe, an ex health services employee and consultant, will continue to support the work of MS Ireland.
The chair of the finance committee gave an update on the financial status of MS Ireland. The Chief Executive gave an overview of the activities of MS last year. She encouraged us to celebrate the combined work of the organisation and reflect on the real difference we make to people with MS and their families.
View of AGM Annual Review presentation
Our 2014 calendar was officially launched at our National Meeting Day and is available through our online shop and a number of retailers nationwide
We need 'focus' in our everyday lives to achieve our goals or targets. We need self-discipline to stay on track. Our battle with Multiple Sclerosis is a never ending battle and there are very few lulls in the fighting and because of that we need focus more than most. The need for focus begins with little things, with attainable targets. We need 'our little victories' as Claire Mitchell wrote in her recent blog. The longest journey begins with one step. Take the first step and set yourself a target, the second step is to set a route plan to reach the target and the third step is a celebration having reached your goal. These two lines from the poem ‘Don’t Quit’ define focus in my opinion ...'when care is pressing you down a bit, rest if you must, but don’t you quit'. We need our little victories to encourage us to keep going. Start small with realistic and attainable targets. There is no point in saying that I am going to walk one mile every day as an immediate target. Start small. I will walk 100 yards a day for the next week and then increase it to 200 etc. Re-assess your goals on a regular basis and don’t be afraid to downsize. Work within a comfort zone but strive to move outside of it. Stay mentally strong because very often mental strength is more important than physical strength. Decide on your goal. Weigh up the benefits of reaching your target and consider the disbenefits of inaction. Seek the help of a professional in deciding the route to your target and choose a realistic time frame within which to achieve it. Unrealistic targets or timescales will only disappoint you and this will ultimately break your determination and destroy your focus. Keep a daily record of what you achieve and this can help you determine whether you are doing what you should be doing. This is an instance when more than the thought counts. There are a number of different words to describe focus when taken in the context of this blog; self discipline and perseverance being the two that I like most. Focus is only important if you have set yourself a goal, a target to be achieved or a destination to be reached. Thus, if you don’t have a target you can never reach it. An ill-defined target is of no use. You cannot set out a pathway to achieve a goal unless you have set a goal. Putting it at its simplest; if you want something and don’t have the cash to pay for it you save. If you save enough you get your desired product. (Borrowing doesn’t count!!). While you are saving there will be tough choices to be made; if I buy this I can’t save that money and my target is still out of reach but if I don’t buy and save my target is nearer to my grasp. Some authors on the importance of focus, recommend telling people about goals in the hope that they will then act as monitors of your progress. Personally, I believe in keeping my goals to myself, however I do keep a daily log. Honesty with oneself is very important, dishonesty is only fooling yourself and ultimately leads to disappointment!
MINISTER KELLY RESTORES FUNDING TO HEALTH, DISABILITY & OTHER ORGANISATIONS UNDER SSNO SCHEME The Minister for the Environment, Community and Local Government, Alan Kelly TD announced today (18 July, 2014) that funding is being restored to a number of health, disability and other organisations for a twelve month period, following a review in relation to the SSNO scheme. The funding is being made available to the majority of organisations who were unsuccessful in their applications under the Scheme to Support National Organisations (SSNO) but had received funding previously from it up to 30 June 2014 and submitted a valid application in 2014. Minister Kelly is making available bridging finance totalling just under €1.3 million for a 12 month period to avoid a sudden and adverse impact on these organisations. The funding for each organisation will be restored based on their allocation so far this year. Alan Kelly said: “While I am restoring the funding to these organisations for a twelve month period, it is essential that, that time is used to find a more long-term sustainable solution to the funding problems of these organisations. In all, 30 organisations will have their funding restored until July of next year and the services and advocacy they provide should continue for that period.” “In agreement with my colleague Kathleen Lynch TD, Minister of State at the Department of Health with Special Responsibility for Primary Care, Mental Health and Disability, the public funding of national organisations in the health and disability sector will be reviewed with a view to rationalising the funding of these organisations to ensure efficiency in the use of public money and avoidance of duplication, while providing appropriate support to organisations working in the sector.” This additional funding will amount to €1.28m for the 12 month period to end June 2015. While it was known that the existing scheme was ending at the end of last month and applications were sought for the new scheme with no guarantee of continued funding, it is clear that organisations had become increasingly dependent on this funding. In the circumstances the Minister has decided to allocate this bridging funding for a twelve month period while a review takes place; the arrangements for this review will be finalised shortly. Alan Kelly said that: “The review should result in a system of support and funding for core costs of organisations delivering front line services in the health and disability sector in a way that avoids duplication and is cost effective.” This bridging funding in 2014/2015 is once off transitional funding and will enable organisations to plan for their future whether with or without State support such as that provided under the Scheme to Support National Organisations.
This week blogger Lucina Russell shares her experience of public and private health insurance. This business of Public v Private has intrigued me since I read the Brian Friel play 'Philadelphia Here I Come', in secondary school. The play illustrates the conflict between Public and Private Gar's thoughts and actions, through the reveal of his past experience, present feelings and future fantasies. This has absolutely nothing to do with the topic of Health Insurance, but it makes me look well educated, or at least shows that I have a good memory … It was around that age that my mother started hammering home the 'Essential Tips for Being Grown Up'. One of the best pieces of advice she gave me was not to say bad things on your friends' boyfriends if they split up, in case they got back together again. I should have listened ! Another piece of advice was to get Private Health Insurance as soon as I could. Once I had a steady income, I got the insurance in place. It made me feel very grown up and secure. I had a twin pregnancy 7 years ago and forked out €3,000 on top of my policy for the care that I got. I must say, I had top class treatment, but if I did it all over again, I'd prefer to spend the money on something else … A three grand shopping spree sounds rather appealing. Four years ago after a very scary weekend with blurred vision and terrible headaches, an optomologist told me that I had Optic Neuritis. She referred me onto a Neurologist and made an appointment for an MRI. My MRI appointment was four days later, the Neurologist appointment for a fortnight later. I went home to wait. In the meantime, I was very sick. The headaches persisted, I had constant nausea and my eye closed with the strain of the blurring. My young children wanted to climb all over me, but I wasn't able for them. In the end, I just couldn't wait any longer and went to A&E in the private hospital, where my appointment was scheduled two weeks later. After spending €350 on blood tests and a few hours monitoring, I was told that I should go home and wait. They said they couldn't do anything without the MRI results. I asked if they could do them there and then to speed up the process. It would cost another €700 (at least). There was no guarantee that they would then admit me. So I went home, with a heavy heart and an empty wallet. I had my MRI, as scheduled a few days later. A friend suggested that I get a referral letter from my GP and to head for A&E in Beaumont Hospital. That's what I did. After a rather unpleasant and almost surreal night on a chair in a packed A&E Department, I was admitted to the Neurology ward the following morning, had a lumbar puncture done and started a five day course of IV steroids. The care was super. I felt listened to and my opinions and fragile state respected. I asked the staff what difference my Private Health care made to the care that I received. The reply was 'none'. Basically, if you are sick enough to be in a Neurology ward, you're in. I found that the aftercare available to all MS patients in Beaumont is equally good. I particularly like the telephone service, where you can phone an MS nurse and just have a chat. I had a further health scare earlier this year, which involved a Fast Track trip through the Breast Check unit in St James's Hospital. While frightened by the speed in which the tests took place, I was very impressed by the rigors of the tests and the level of communication from the medical team. Thankfully, all was well, but either way, I felt that I would receive the best care available. Family members had similar experiences positive experiences on the oncology and cardiac services, again all through the public system. I don't consider these services as 'free of charge' though. Isn't that why we pay hefty taxes? When the subject of the benefits of private insurance is discussed, elective surgery is often mentioned, for operations such as a hip replacement. An elderly relation of mine has a hip replacement recently, but only after a long and painful summer of injections into her knee by a private consultant, who didn't associate the pain in her knee with her hip. So it seems that private hospitals make mistakes too. Furthermore, when she has a heart attack after the surgery, she was rushed to the neighbouring public hospital by for treatment. As a result of these experiences, I've been thinking long and hard about the benefit of private health insurance. I listen to the media, talking about a public health system in shambles. I know about the patients sleeping on hospital trolleys. I remembered my mother's advice. I considered my long term health needs. I thought about my ever decreasing bank balance. In the end, I cancelled my health insurance policy. Just please don't tell me Ma!
DFI Calls On Government to Restore SSNO Funding to Disability Organisations The Disability Federation of Ireland (DFI) today called on Government to restore €1.2 million in funding lost to 26 disability organisations before the commencement of summer recess in the Oireachtas tomorrow. 26 disability organisations - including MS Ireland - saw their funding through the Scheme to Support National Organisations (SSNO), run by the Department of the Environment, Community and Local Government, revoked on 30th June. Last night, the Minister of State with responsibility for the implementation of the National Disability Strategy (NDS), Kathleen Lynch, confirmed that she was not advised of this development. Furthermore, following yesterday’s designation of responsibilities to Ministers of State, Minister Lynch is no longer assigned to the Department of Justice and Equality, where responsibility for the whole-of-government implementation of the NDS rests. She is now solely attached to the Department of Health, where her portfolio includes disability, mental health and primary care. Chief Executive of DFI, John Dolan, explained, “This demonstrates the evident confusion as to where and with whom responsibility for the NDS lies: this needs to be cleared up immediately. People with disabilities are very concerned with any signal that the SSNO funding and other disability issues are to be dealt with through a Minister assigned only to Health”. He continued, “There is a continuing lack of priority and understanding at the centre of Government around the core reason for the NDS, namely to ensure that people with disabilities can fully participate across all areas of public life and in the community. DFI has advocated for some time for Government to assign a Senior Minister for Disability Inclusion. Not alone have the Taoiseach and Tánaiste failed to do this, but the appointment of the Minister for State adds more confusion and confirms that Government is not competently dealing with its ‘priority’ social justice issue”. DFI is calling on all T.D.s and Senators to show their solidarity with disabled people and their families, who are now being adversely affected by this withdrawal of funding, and to support the determined implementation of the NDS. They can demonstrate this today by attending the Private Members Motion on disability issues, presented by Deputy Finian McGrath on behalf of the Technical Group, resuming at 7.30pm this evening. Mr Dolan concluded, “People with disabilities and their families need to be assured that, by the time the Dáil closes for summer recess tomorrow, this vital funding to their organisations will be back in place. We are urging Government to reinstate the €1.2 million funding to the 26 disability organisations who lost it, and to take immediate action to protect and invest in the future of people with disabilities in Ireland”. MS Ireland is an active member of the DFI and supports this call for SSNO funding to be restored.
Official charity partner with the Helly Hansen Killarney Adventure Race Irelands biggest adventure race, the Helly Hansen Killarney Adventure Race, have partnered with MS Ireland as its charity partner for this year’s much anticipated race. With the success of last year’s adventure race in Killarney which saw over 2,000 people running, kayaking and cycling around Killarney lakes and mountains, it is set to be another sell out. Ava Battles, Chief Executive of MS Ireland, said at the launch night, ‘’We are delighted to be involved with the Helly Hansen Killarney Adventure Race, and we hope it will raise awareness of Multiple Sclerosis and generate much needed funding through sponsorship. Over 8,000 Irish people and many thousands more who share their lives live with MS, the most common disabling neurological condition in the country. We know that increased physical exercise can significantly reduce some MS symptoms so we would encourage people to sign up now and get active for MS.” Liam Delahunty is a dad of four from Waterford and was diagnosed with MS in 2007. He has decided over the next 18 months he will take part in 24 adventure races around Ireland. Liam says, “I just want to show other people with MS and the public that MS can still mean an active life. Exercise has changed the way MS affects me and changed my attitude to everything. I’m daring to change perception and hope others join in along the way to take part in Killarney! The challenge is not just for the grizzly hard core adventurers as there are different route options to suit all levels of fitness. If you are looking for a Challenge in 2014 then the Killarney Adventure Race is one adventure you won’t want to miss!” The adventure race events are organized by Killarney based company Elite Event Management. Race organizer Oliver Kirwan said, “Liam’s story is inspirational and we are encouraging everyone who takes part to raise money for MS Ireland. Don’t forget that there is a relay team option so you can share the challenge with friends! We encourage everyone to make this your goal and support Liam in 2014. Do you want to join team MS Ireland? Team MS Ireland participants get €10 off race entry! Why not register your interest for the Helly Hansen Killarney Adventure Race
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