MS Ireland has formally committed to complying with the Statement of Guiding Principles for Fundraising
MS Ireland is fully committed to achieving the standards contained
within the Statement of Guiding Principles for Fundraising.
• Improve fundraising practice
• Promote high levels of accountability and transparency by organisations fundraising from the public
• Provide clarity and assurances to donors and prospective donors about the organisations they support.
The Board of MS Ireland have considered the Statement and believe we meet the standards it sets out. Where we have not complied with the Statement we have provided an explanation.
MS Ireland's report on our fundraising activities is available in our most recent Annual Report 2015
We welcome your feedback on our performance via any of the contact points provided. Read our Feedback and Complaints Procedure.
The Statement of Guiding Principles for Fundraising is a guide to best practice developed by a steering group set up in response to the Charities Act 2009.
The Board of MS Ireland endorse the following "Donor Charter"
• As a charity seeking donations from the public, we, the Multiple Sclerosis Society of Ireland, (MS Ireland) aim to comply with the Statement of Guiding Principles for Fundraising.
• Our pledge is to treat all our donors with respect, honesty and openness.
• We commit to being accountable and transparent so that donors and prospective donors can have full confidence in MS Ireland.
• We promise we will effectively apply your gifts to use for their intended purposes.
• We commit that you, our donors and prospective donors will:
• Be informed of the organisation’s mission, and of the way the organisation intends to use donated resources.
• Be informed of the identity of those serving on the organisation’s governing board, and that the board will exercise prudent judgement in its stewardship responsibilities.
• Have access to the organisation’s most recent financial statements.
• Be assured your gifts will be used for the purposes for which they were given.
• Receive appropriate acknowledgement and recognition.
• Be assured that information about your donation is handled with respect and with confidentiality to the extent provided by law.
• Expect that all relationships with individuals representing the charity will be dealt with professionally.
• Be informed whether those seeking donations are volunteers, employees of the organisation or hired third party agents.
• Have easily available the agreed procedures for making and responding to complaints.
• Have the opportunity for any names to be deleted from mailing lists. MS Ireland mailing lists are not shared with third parties.
• Receive prompt, truthful and forthright answers to questions you might have of the organisation.
If you do have a comment about any aspect of our work, you can contact MS Ireland in writing, by telephone or email. In the first instance, your comment will be dealt with by our CEO. Please give us as much information as possible and let us know how you would like us to respond, providing relevant contact details.
Write to: Chief Executive, MS Ireland, 80 Northumberland Road, Dublin 4 Tel: 01 6781600 Email: firstname.lastname@example.org
The Statement of Guiding Principles for Fundraising sets out the following in relation to Disclosure:
“Donors have the right to be informed of the status and authority of those soliciting donations; for example, donors will be informed if fundraisers are employees of the organisation or third party agents”.
MS Ireland is open about whether those seeking donations on its behalf are volunteers, employees of the organisation or are third party agents. Anyone fundraising on behalf of MS Ireland must ensure that prospective donors are aware of their status, i.e. volunteers, employees or third party agents.
If or when a member of the public enquires about the employment standing of a fundraiser they must receive an honest and open answer. The standing in this case relates to whether or not a fundraiser is a volunteer, a paid employee of the charitable organisation or a third party agent working on behalf of the charity.
As a valued supporter of MS Ireland, the board know it is important that we facilitate any feedback or complaints that you may have. If for any reason, you should feel aggrieved then we will endeavour to do our utmost to make sure that we come to a satisfactory resolution. We feel it is important that we learn from our mistakes so your feedback is very important to us.
We are committed to ensuring that all our communications and dealings with the general public and supporters are of the highest possible standard. We listen and respond to your views so that we can continue to improve. We are committed to upholding the Statement of Guiding Principles for Fundraising available on www.ictr.ie We welcome all feedback.
Therefore we aim to ensure that:
• it is as easy as possible to make a complaint;
• we treat as a complaint any clear expression of dissatisfaction with our operations which calls for a response;
• we treat it seriously whether it is made by telephone, letter, fax, email or in person;
• we deal with it quickly and politely;
• we respond accordingly - for example, with an explanation, or an apology where we have got things wrong, and information on any action taken etc;
• we learn from complaints, use them to improve, and monitor them at our Board.
If you have feedback or a complaint about any of our work you can contact our Chief Executive by email, telephone or in writing:
Ava Battles, Chief Executive, MS Ireland, 80 Northumberland Road, Dublin 4; Tel: 01 6781600; Email: email@example.com
If your complaint is received over the phone we will endeavour to have it resolved there and then (where possible), if it is received by email, fax or post we will acknowledge it within 7 days and do everything to resolve any complaints within 14 working days. If this is not possible, we will explain why and provide a new deadline.
If you are not happy with our response, you may get in touch again by writing to MS Ireland’s Chairman. The Chairman will ensure that your appeal is considered at Board level and will respond within two weeks of this consideration by Board members.
Finally, if you feel that you are not satisfied, we can direct you to an independent monitoring group who will assess your complaint in an objective manner.
In our ‘MS & Money' series this week’s blog is from Willeke Van Eeckhoutte. She looks at money, employment and early retirement. Having MS means that unpredictability is part of your life. Like Emma wrote in her first piece about MS and money, “Having MS can affect our ability to earn. Not earning can cause a financial crisis and a financial crisis can affect our peace of mind causing great stress and emotional wobbles.” On my day of diagnosis, my neurologist at Beaumont Hospital, said, “From now on you should change your lifestyle, and work.” At first, changing my lifestyle was not an option. I never realised, though, that on a physical level, my body had already decided for me. Stress and anxiety flood your mind, and immediately you think, “Will I have to give up my job, and if so, for how long?” Retiring from work isn’t an easy question because you don’t want to become a liability to your colleagues or yourself, so it brings a lot of ‘What ifs…” and “I don’t want to lose my…” In fact, it took me a good while trying to find a definitive answer to that question. At some stage, the level of fatigue, trigeminal neuralgia, and other symptoms became a hurdle too many, and even sitting down in front of a computer for an hour in the office had me crying of facial and eye pain. Again, my body had decided for me even though my mind didn’t want to give up any freedom working had given me. Being on a disability allowance or invalidity pension teaches you how to be creative with money. Absolutely, you want to remain financially independent for as long as possible. There are many things to consider, i.e. will you be able to live on the level of income for example, which social welfare benefits you might avail of, can you still do some work or what is the outcome of your occupational doctor’s exams, etc. The prospect of having to rely on a weekly social welfare income is daunting. So many things depend on that social welfare payment because life in Ireland is expensive, and money seems to fly out the front door faster than it is coming in. Bills and rent require rescheduling, and you need to learn to squeeze as much money out of what is left. You can sometimes swap Debenhams for Penney’s or the weekly take away for a monthly one and instead lose weight with healthier food. Try and cut credit cards in two or phone a money advice line that can help you sort out outstanding bills, credit cards or bank loans. If you feel that giving up work is the only option left, do some research beforehand on the Citizens Information website where you can find a checklist for people with long-term illness or disabilities, be aware though that some benefits are means tested while others are not. If you need a hand filling in paperwork related to benefits, you can find a Citizen Information Centre here. Being retired has been the blessing my MS needed. I still have lots of trouble with fatigue despite using several treatment options and trigeminal neuralgia remains an ungentle reminder of my illness. What has been a blessing is that whenever I now feel I need to withdraw to rest because of stabbing facial pain or fatigue, I can do so without an employer telling me to go back to work. It sounds so simple, but it has changed life for the better. Financially, life is a challenge. For example, buying luxurious coats, shoes, and handbags, or buying an expensive new laptop or jetting off somewhere far, far away, now those things belong in the past. But, life is about adaptation. And as time goes on, you begin to realise that maybe you should have retired sooner. It didn't turn me into a wealthy, female version of Richard Branson, but it has given me another chance of starting over. Yes, with less money in the bank, but emotionally stronger and richer than I ever thought possible. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter
Life Hacks The video is about ‘life hacks’. Life hacks are tips or tricks that help to make everyday tasks easier. For the filming, we’ll need you to hold up a card to camera and record your voice saying the tip (off camera), we’ll provide you with the tip and the card. We need people who can take part in a few hours of filming in Cork city or Dublin either on these dates: Cork - 9th or 15th May Dublin - 8th or 17th May The video will be released for World MS Day on Wednesday, 31st May. Get in touch If you’re interested in taking part please email Aoife Kirwan at firstname.lastname@example.org and we’ll be in touch to arrange the date and confirm the venue. Thanks!
Exploring Parents' Experiences of a Multiple Sclerosis Diagnosis in their young adult sons/daughters Aim of Study Volunteers are needed to take part in a study that aims to explore the lived experiences of parents presented with an MS diagnosis of their young adult sons/daughters. Who can participate? Parents of young adults aged between 20-40, with a diagnosis of any stage of MS are invited to participate. What do I have to do? As a participant in this study, you will be asked to take part in a private and confidential interview with the researcher, at a day, time and location most convenient for you. Your participation would involve one meeting with the researcher that will last approximately 60 minutes. Participation in this study is completely voluntary. All queries are confidential. Get in touch For more information or to volunteer for this study please contact: Ciara O’Meara, Masters Health Sciences (Nursing Education) Student, School of Nursing & Midwifery, NUIG at email@example.com This study has been reviewed and ethical approval received through the National University of Ireland, Galway.
On 6 April, the Government released a report “Make Work Pay”, designed to help people with disabilities and long term illnesses to achieve their ambitions and find work, and to remove the many barriers which prevent them from doing so. MS Ireland made a submission as part of the consultation process during the development of this report. The report was launched by Leo Varadkar, Minister for Social Protection; Simon Harris, Minister for Health and Finian McGrath, Minister with Special Responsibility for Persons with Disabilities at the Chester Beatty Library, Dublin Castle. The report makes 24 recommendations, several of which will be acted on immediately. Key recommendations include the following: People with a long-term disability payment who move off the payment to get a job will retain their Free Travel Pass for a period of five years Significantly raising the earnings level disregard for people in receipt of Disability Allowance or Partial Capacity Benefit when assessing eligibility for a Medical Card Dispensing of the requirement that work must be of a ‘rehabilitative nature’ to qualify for the Medical Card and Disability Allowance earnings disregard A Fast-Track return to Disability Allowance, Invalidity Pension, the Medical Card and other supports for people where employment does not work out Development of a ‘Ready Reckoner’ to calculate the net benefits and financial implications of working MS Ireland warmly welcomes many of the recommendations in the report and we are pleased to note that a number of the points made in our submission have been addressed. In particular we welcome the recognition of episodic and unpredictable conditions such as MS and the need to make it easier to reapply for supports if forced to suddenly withdraw from the workforce. We are also very pleased to note the focus on the Medical Card and how vital this is as a support for people with disabilities and long-term illnesses. The threat of losing the Medical Card can be a powerful disincentive to taking up employment and it is very positive to see the Government acknowledging this and taking measures to address it. The report also makes a number of recommendations about communications from the Department of Social Protection and the role of the Intreo Centres in particular. MS Ireland had noted in our submission that there is a need for more training for Intreo Centre staff on working with people with long term illnesses and disabilities, a need for better systems for the Department to communicate key information to disability organisations so they can disseminate it to their members, and the need for named case workers in Intreo Centres to avoid people having to repeat information and processes. All of these points have been addressed in the recommendations. Whilst the report is broadly extremely positive, some concerns still remain - whilst the proposal to raise the earnings disregard for Medical Card applicants on Disability Allowance and Invalidity Pension is very welcome, the Government also needs to consider that people who do not qualify for these payments may still struggle on low incomes and rely heavily on the Medical Card. Therefore there is still a need for a more flexible Medical Card application process that takes account of the additional costs of living with a disability or long term illness. Further reading You can read the full report here The Executive Summary (including the recommendations) can be found here Read MS Ireland’s submission to the Make Work Pay consultation
'This weeks blog is from Lucinda Russell. She takes us on a journey of clinics, friendship and what ifs? Read on for a fresh take on the day.' In the early days of my diagnosis with Multiple Sclerosis in 2011, everything about my neurology appointments in Beaumont Hospital caused me anxiety – from getting lost en-route and then kicking myself for driving through the city, instead of the motorway, out of fear of accidentally driving into the Dublin Port Tunnel and orientating myself within the hospital, to the cost of the car-parking. Now, the MRI and follow up appointments are just another date in the diary. Until the day arrives. It’s here. I’m early. Without thought, I make my way to Clinic B. Neurology and the Fracture Clinic share a registration desk. It seems like an odd match, brains and broken bones. Still, it’s a people-watchers dream. The logistics of it all is like an awkward choreography, as patients hobble, or are wheeled about with various strappings and supports, making their way to somewhere else. Despite the busyness of the place, there is a comforting sense of calm. The linoleum on the floor is remarkably shiny and the space is bright and airy. There is a lot to focus on, to distract myself about why I’m here. I’m experiencing a period of really good health and the appointment almost seems unnecessary. I don’t have time for this and I don’t have time to be sick. I am called before my scheduled time. I abandon the blog post that I had started to tap into my phone. I am greeted by a neurologist whom I haven’t met previously. No student doctors shadowing this time. Like all of the neurology team that I have encountered to date, this woman is warm and friendly, compassionate. She is thorough in her physical examination of me, testing my strength and reflexes. It feels like I am as strong as I ever was. She is concerned that I haven’t had any recent blood tests and I feel silly saying that I forgotten to organise these in advance of our meeting - it is in my best interest after all. An award for ‘Patient Taking Charge’, I will not win. The neurologist talks me tells through the results of my recent MRI scan. No new significant lesions, but some minor ones. ‘How minor is minor’?, I ask. She excuses herself and says that she will speak with the senior neurologist. The minutes seem long now. My head spins. ‘Is there something she doesn’t want to tell me? News that she would prefer her senior delivered'? I think of My Lovely Friend who was diagnosed with breast cancer very recently. She’s the same age as me, also with a young family and largely managing on her own. She’s a stunner. The type of girl who turned the heads of the handsome guys in college. I recall our phone call when she tells me her news and the plans for the next few months. Chemotherapy, surgery and radiation.She tells me that she has bought a wig. I can’t remember what I said to her, but I know that I cursed a lot. I think about her children and I think of mine. The uncomfortable 'what if'? questions they ask that I'd prefer not answer. I worry about how we will cope if I could no longer work to financially support them. I have thoughts of people I know with advanced MS and what an unforgiving disease this can be. I wonder if I could still feel feminine if I looked, moved, or sounded differently. I think about My Lovely Friend’s upcoming surgery and how invasive it will be on her womanliness. A strong willed lady, she has a plan, will roll her sleeves up and get through this. I wish I lived closer, so I could offer her more practical support. The neurologist returns and the news is good. Really good. The minor lesions on my scan are old, in the sense that they were visible on last year’s scan. There are no new lesions. Those that are there have shrunk. The drugs are doing what they are intended to do, although it's not the case for other people. It's as good as it can be. I can feel the relief in my body as she completes the paperwork and refers me to haematology for blood tests. My needle aversion hasn’t lessened and I need to lie down. The blood flows easily. The sun shines. Today is a good day.
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