MS Ireland
Informing, Supporting and Caring for the MS Community
The Multiple Sclerosis Society of Ireland ("MS Ireland") is a charity, registered in Ireland as CHY05365, with its head office at 80 Northumberland Road, Dublin, Ireland, email: info@ms-society.ie.
You should know what information we collect and how we use it.
The objectives for which MS Ireland exists are:
· to facilitate people with MS to control their lives and environment, to live with dignity and participate in the community,
· to provide support for the families and carers of people with MS,
· to co-operate with the medical, scientific, social and caring professions to promote scientific research into the cause of, cure for and management of MS, and the alleviation of medical and social symptoms,
· to exchange and disseminate information relating to MS, and
· to provide an identifiable focal point by developing an efficient, effective and caring organisation to serve the needs of people with MS.
MS IRELAND is committed to protecting the privacy of people who use our services, employment candidates and current employees, contacts, fundraisers, business partners, and other third parties we deal with, such as family members.
This Privacy Statement details how MS IRELAND collects, uses, discloses, transfers and stores your personal information. It applies to personal data about you that we collect, use and otherwise process in connection with your relationship with MS IRELAND.
MS IRELAND is a nationwide charity that operates from its headquarters in Northumberland Road in Dublin, the MS Care Centre at 65 Bushy Park Road, Rathgar, Dublin 6, and through employed regional workers and offices. MS IRELAND also has a network of Voluntary Branches, each of which processes personal data submitted to it directly and/or through a client's consent when he or she has ticked the "I would like my details sent to the nearest Voluntary Branch" on MS IRELAND's Lifetime Membership Form or the MS Care Centre Contract of Care. Any personal information processed by MS IRELAND in connection with this Privacy Statement is ultimately controlled by a MS IRELAND as the "data controller" as provided for under the General Data Protection Regulation ("GDPR"), the Irish Data Protection Acts, 1988 to 2018, and the Data Protection Commission (DPC) Guideline for the Charity and Voluntary Sector.
The elected Secretary of each Voluntary Branch is the controller of the personal data processed in that branch.
You may request information about the personal data that MS IRELAND holds about you by emailing us at dataprotection@ms-society.ie or writing to us at 80 Northumberland Road, Dublin, Ireland.
Please note that throughout this Privacy Notice the word "website" refers to https://www.ms-society.ie.
1. INFORMATION COLLECTED BY USING MS IRELAND WEBSITE
1.1 You are not required to provide any personal information to access public areas of MS IRELAND's website.
1.2 However, when you visit the MS IRELAND website we record your IP address and details of your visit, including the date and time. An IP address is an assigned number, similar to a telephone number, which allows your computer to communicate over the internet. In addition to your IP address the following technical information will also be collected: your login information, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform, information about your visit including the full Uniform Resource Locators (URL), clickstream to, through and from the website (including date and time), pages viewed, download errors, page interaction information (such as scrolling clicks) and methods used to browse away from the website.
1.3 MS IRELAND uses this IP information for its legitimate interests to compile statistical data on the use of our website and to track how users navigate through our website in order to enable us to evaluate and improve.
1.4 Personal information such as names, addresses, email addresses, telephone numbers, and other personal data relating to services that we are providing to you will only be collected from users of the website who voluntarily input such information.
1.5 Focus Limited website designer in Bristol, England, acts as a data processor for MS Ireland in relation to the MS IRELAND website. In this capacity, Focus has sight of data regarding: donations, staff, the personal information of clients (including names, addresses, email addresses), enquiries and memberships.
2. CONTACT SALESFORCE DATABASE
2.1 We may retain information you have provided us with in MS IRELAND's contact database. Information that we typically hold in our database includes:
2.1.1 your contact information, including your name; job title; organisation's name; address; phone number(s), email address(es) and other identification information;
2.1.2 the area(s) that you have an interest in,
2.1.3 historical fundraising activity for MS IRELAND.
2.2 Once your details are included in MS IRELAND's contact database we may also record details of any:
2.2.1 MS IRELAND's mailing lists you have subscribed to or unsubscribed from;
2.2.2 mailings (including services updates and event invitations) we have sent you;
2.2.3 hyperlinks you have clicked in any mailing that we have sent you;
2.2.4 meetings we have held with you;
2.2.5 event invitations you have replied to; and
2.2.6 events you have attended.
2.2.7 your care records.
2.3 From time to time we may ask you by email to review your contact details and preferences, and update them as necessary. This not only helps us to keep the contact information we hold about you up-to-date, it also ensures that we only send you information that you have requested and/or is relevant to you.
3. INTERACTIONS WITH MS IRELAND
We retain personal information relating to interactions between MS IRELAND and people who use our services, clients, job applicants and current employees, contacts and business partners, including information relating to the services that we provide. We only retain information that is necessary for the purposes set out in this Privacy Statement.
4. PROCESSING OF YOUR PERSONAL INFORMATION
4.1 MS IRELAND, in the MS Care Centre, the regional offices, and throughout its network of Volunteer Branches, will only collect and process personal information where it has a legal basis for doing so. This includes where MS IRELAND is providing a service to you or fulfilling a Care Centre or Regional Office contract with you, where MS IRELAND has to comply with a legal duty, where you consent to the collection and use, where MS IRELAND has a legitimate interest in collecting and processing the personal information, or where the processing is necessary in the public interest. When personal information is processed, the basis of processing will be in accordance with relevant Irish and EU data privacy laws, our legal obligations and to meet our information security requirements.
4.2 MS IRELAND uses personal information which we have collected from you in order to:
4.2.1 provide you with a more tailored and effective service and/or care;
4.2.2 perform analysis aimed at improving our products, services and technologies for people with MS;
4.2.3 communicate with you through certain mandatory service communications such as welcome letters, appointment reminders and our terms and conditions;
4.2.4 communicate with you in connection with any services that we are providing to you and otherwise perform the services for you that you have engaged us to provide;
4.2.5 ensure compliance with regulatory requirements and applicable law;
4.2.6 provide updates and newsletters, including our MS News magazine by mail and our electronic newsletter, and invitations to events and meetings;
4.2.7 carry out administrative purposes (including within the MS IRELAND regional offices and the network of Voluntary Branches), which may include, for example, accounting and billing, auditing and identification checking;
4.2.8 undertake systems testing, maintenance and development in order to ensure network and information security;
4.2.9 to let you know ways you can get involved in our fundraising and campaigns;
4.2.10 when you are making a donation, registering for a campaign or event, as appropriate, you may be asked to provide personal details such as name, email address, postal address, phone number or payment information as needed;
4.2.11 prevent fraud; and
4.2.12 market our services and products to you where MS IRELAND has a legitimate interest or you have consented to us doing so and in accordance with your preferences.
4.3 MS IRELAND will only collect, use and otherwise process information revealing racial or ethnic origin, political opinions, religious beliefs or relating to your health or sexual orientation or otherwise which is treated by applicable data protection laws as a "sensitive" or "special" category of personal information, where and only to the extent that you have given your explicit consent unless we are otherwise permitted or required to collect, use and process such information under applicable data protection laws, including but not limited to where this is necessary in connection with providing our agreed services to you.
4.4 Any data collection that is optional will be made clear to you. However MS IRELAND may need to collect and process personal information for certain legal compliance purposes or in order to perform certain services for you, including compliance with legal requirements relating to our anti-fraud, anti-money laundering or 'know your customer' obligations. If you choose not to give us this personal information then it may delay or prevent MS IRELAND from meeting MS IRELAND's obligations or it may mean that MS IRELAND cannot perform certain services for you. MS IRELAND will advise you if this is the case.
5. MARKETING and INFORMATION COMMUNICATIONS by MS IRELAND
5.1 We may wish to use the personal information that we collect about you to provide you with relevant marketing communications. This may include sending tailored direct marketing and information e-mails and other communications relating to our services or those of our MS IRELAND regional offices or Voluntary Braches, and sending you invitations to seminars and other events related to the care of yourself or your family member.
5.2 We shall only send such marketing communications to you to the extent that doing so is in the legitimate business interests of MS IRELAND or where you have consented to us doing so. As set out in the Data Subjects Rights table below, you may withdraw that consent at any time by contacting us at dataprotection@ms-society.ie. In addition, each electronic communication that you receive shall have a very clear "unsubscribe" option, which will allow you to stop receiving similar communications in the future.
6. EXCHANGE OF INFORMATION
6.1 MS IRELAND shares data between our regional offices and our Voluntary Branches, where necessary, for the purposes outlined in this Privacy Statement. MS IRELAND ensures that your personal information is shared in accordance with applicable data protection laws, at all times providing protection to your personal information and your rights.
7.1 MS IRELAND has relationships with third parties in order to provide services for people with MS, such as medical professionals. In some instances we may disclose your personal information to third parties where this is necessary to perform the services for which you have engaged MS IRELAND or otherwise in furtherance of an outsourcing or other data processing arrangement. In those circumstances MS IRELAND will ensure that the third party is contractually bound to only process personal information in accordance with applicable data protection laws and with MS IRELAND's specific instructions and requirements, and at all times in a manner that protects your rights under applicable data protection laws. Our suppliers and service providers will be required to meet our standards on processing information and security. The information we provide them, including your information, will only be provided in connection with the performance of their function. They will not be permitted to use your information for any purposes other than those outlined in this Privacy Statement.
7.2 In relation to any other third parties, MS IRELAND will only disclose or transfer your information where you have given your consent or where we are required to do so by law or other regulatory code or practice.
7. TRANSFER OF INFORMATION ABROAD
8.1 In very rare circumstances, personal data may be transferred to or accessed from countries whose laws provide a level of protection for personal data, not always equivalent to the level of protection that may be provided in your own country. In particular if you are located inside the European Economic Area ("EEA") your personal information may be transferred to a country outside of the EEA.
8.2 MS IRELAND ensures that cross border transfers comply with all relevant laws and regulations and in addition, we enforce the highest privacy and data management standards across all our offices through MS IRELAND Data Protection Policy. A copy of that policy may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
8.3 Unless:
8.3.1 you have expressly consented to the transfer of personal information;
8.3.2 the transfer is necessary for the performance of the services for which MS IRELAND has been engaged or the conclusion or performance of a contract concluded in your interests; or
8.3.3 the transfer is otherwise permitted by applicable data protection laws,
MS IRELAND will only transfer your personal information to a country that is deemed to have an adequate level of protection under the applicable data protection law or otherwise where MS IRELAND has put in place adequate safeguards to protect the personal information. In particular where MS IRELAND sends your personal information outside of the EEA, MS IRELAND shall only do so where the recipient of the information is subject to:
8.3.4 binding corporate rules;
8.3.5 standard data protection clauses approved under applicable law;
8.3.6 an approved code of conduct; or
8.3.7 an approved certification mechanism.
8.4 Further details on the safeguards adopted by MS IRELAND may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
8. DATA RETENTION
MS IRELAND shall only retain your personal information for so long as there is a reasonable need to retain the information for the purposes set out in this Privacy Statement. Further details on MS IRELAND's policy in relation to retention periods can be found in our Record Retention Policy. A copy of that policy may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
The MS Care Centre is registered as a provider by the Health Information and Quality Authority (HIQA) and complies with HIQA's Information Management Standards for National Health and Social Care Data Collections.
9. PROTECTION OF YOUR PERSONAL DATA
MS IRELAND is committed to protecting the security of your personal information. We use a variety of security technologies and procedures to help protect your personal information from unauthorized access, use, or disclosure, across all of our computer systems, networks, website, mobile phones, regional offices and Voluntary Branches.
Data Subject Rights
You have rights in respect of the personal data that we collect and process concerning you.
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Access |
You are entitled to details concerning the processing of your personal data. This includes details of the data being processed, the purposes of the processing, any recipients of your data, the period for which the information is processed, the source of the information, any international transfers of the information and how we protect it. You may also request details of any automated decision making, including profiling, of your personal data. You are entitled to a copy of the personal data we process about you. |
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Corrections |
You are entitled to have any incomplete and inaccurate personal information held by us corrected on request.
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Right to be Forgotten |
In some cases, you may request to have your personal data erased where the data is no longer necessary for the purposes for which it was collected and/or processed or you withdraw consent to our use of it. We may advise that we must continue processing your data if there are grounds other than your consent for processing your data, where processing is in compliance with a legal obligation, for reasons of public interest or for the exercise or defense of legal claims. |
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Restrict Processing |
You can ask us to restrict the processing of data MS IRELAND holds about you if you dispute the accuracy of the data we process about you or if you have objected to the grounds upon which we process the information. Where you have asked us to restrict processing the information we shall only hold, process and erase the information as permitted by you or as permitted by the Data Protection Acts, 1988 to 2018 or the GDPR. We will advise you if we do not agree with your request. |
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Data Portability |
Where processing of your data is carried out by automatic means, you are entitled to receive a copy of that information in a machine-readable format and for that to be provided to another data controller, where technically possible. |
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Object |
You may object to MS IRELAND collecting, using and otherwise processing your personal data where the basis for the processing is MS IRELAND's legitimate interests or the processing is in the public interest. In such circumstances we shall cease processing your personal information unless we are legitimately processing the information on a different basis, there are compelling legitimate grounds for continuing to process the personal information, or we are otherwise permitted to under applicable data protection laws, which MS IRELAND will so advise. |
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Withdraw Consent |
Where you have given us consent to process your personal data for any of the purposes outlined in this Privacy Statement and we have no other legal basis for processing, you shall be entitled to withdraw that consent.
datadublin@MS Ireland.law. |
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Right to Complain |
If you have concerns or complaints regarding this Privacy Statement or the manner in which MS IRELAND collects, uses and otherwise processes your personal data we would like to hear from you. If you consider that we have not processed your data according to these rights and we have not addressed your complaint in this regard, you are entitled to lodge a complaint in Ireland to the Data Protection Commission at www.dataprotection.ie. |
This Privacy Statement may be updated from time to time.
The current version of this Privacy Statement can be found on the MS IRELAND website or may otherwise be requested at dataprotection@ms-society.ie.
This policy covers the use of cookies on the MS Ireland website
This policy aims to inform MS Ireland website users that cookies are used on the website and how to go about opting out of cookie usage.
This policy applies to all visitors to the MS Ireland website
Cookies are small text files that are stored on your computer by the websites that you visit. Cookies enable some information about your visit to be recorded and enable websites to recognise a user anonymously based on the information stored in the cookie.
Most websites today use cookies. Cookies are really useful for website providers to monitor how their site is used and what information or content is the most popular. This can help improve content created and how navigation of the site is handled. It can also be used to tailor your experience and ensure that the most relevant information is presented to you based on your preferences. Some cookies are used to enable essential functionality of the website such as shopping or to remember your login details for later visits.
Cookies can be either ‘session’ or ‘persistent’. Session cookies are only stored for the duration of usage of the site and are deleted once the browser is closed. Persistent cookies can remain on your computer for longer specified periods.
There are two types of cookies: First-party cookies that are set by the site you are visiting and Third-party cookies which are set by other sites that have features embedded on the site you are visiting – such as advertisements or YouTube videos.
MS Ireland uses both session and persistent cookies on our website. By using this website you are agreeing to the use of cookies as described in this policy. Our cookies are not used to identify you personally but rather to improve your experience on our website.
We use the following local cookies:
• Google Analytics to track users as they navigate the website – these cookies are named: _utma, _utmt, _utmb, _utmc, _utmz
• AddThis – provides access to social sharing buttons for Facebook, Twitter, etc
• Cookies to allow use of the shopping cart and to process payments
We also use Third-party cookies:
• YouTube to embed video content into our site
• DoubleClick and Google Analytics to allow us to advertise and monitor performance on Google
You can choose not to allow cookies to be used on your machine or delete cookies that are already there. This may have a negative effect on your browsing experiences as a lot of website functionality requires the use of cookies and so some options may no longer work.
Cookies can be controlled through the settings on your browser, use the link specific to the browser you use to get information on how to do this.
• Firefox
MS Ireland use embedded content on the site. You can view the cookie policy of our providers
• YouTube
• AddThis
There are a variety of free tools available that you can use to block cookies to help protect your online privacy. These are listed here for information purposes and do not represent an endorsement of any particular product.
• Ghostery
Contact Information
If you have any questions in relation to this Privacy Statement please contact us at dataprotection@ms-society.ie.
MS Ireland will be holding an event in Leinster House AV room on Wednesday, 3rd October. We need your help in contacting TDs and Senators. Find out more
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We are live streaming talks from our 'Living Well with MS' Conference in Athlone this Saturday, September 22nd. You can join us on the day from anywhere around the world... We are delighted to welcome our guest speakers: 10am: MS Overview and Quality of Life: Professor Gavin Giovanonni, Professor of Neurology Centre: Centre for Neuroscience and Trauma. Research Groups: Neuroimmunology. Barts and The London School of Medicine and Dentistry. 11am: The Importance of Neurorehabilitation in MS: Dr. Jens Bansi, Exercise Scientist; PhD., Rehabilitationszentrum Valens, Switzerland. 12pm: Identifying specific patterns in Genes in people with MS, so as to develop new diagnostic tools, treatments and better our understanding of the progression of MS: Dr. Kate O Brien, Genomics Medicine Ireland 2.30pm: Healthy Brain: Dr. Sabina Brennan, Trinity Brain Health and ADAPT, TCD. Tune in on Saturday, 22nd September from 9.45am. Click the link below and join the conversation. #MSLiving https://youtu.be/14FmBTXwHHM Originally published 18th September 2018
This week Declan Groeger shares with us what it is like being a man living with MS I was diagnosed with Multiple Sclerosis (MS) in 1988. Married with two small children, a mortgage and an overdraft. The day the doctor said “You have MS”, my life changed forever. At that time MS had no known cause, no treatment and no cure. Any plans I had for the future were left swinging in the wind. The cause is still unknown, a cure has still not been found but there are many treatment options available now and more in the pipeline. How did I feel on hearing those unforgettable words? It was 30 years ago and memories dim with time, and MS, but I do remember being overcome with emotions, crying and wondering what path my illness would take. I did take heart from the fact that a maternal uncle had been living with MS for more than 20 years and he was doing fine. Did I feel inadequate after the diagnosis? Certainly not in the immediate aftermath, and probably not in the early years while I was feeling good. I felt so good that I sought a second opinion after ten years. This unfortunately confirmed my diagnosis. Deep down I knew I’d been grasping at straws- the signs and symptoms had become more apparent and I knew the downward slide had begun. I started medicating at this point. I never saw myself in the classic ‘hunter gatherer’ role but I knew that as time passed any role I would, or could, play in our family life would be seriously affected. Jean and I discussed it and agreed that we couldn’t rely on my ability to remain in gainful employment and bring in a steady income and from then on Jean donned the mantle of bread-winner. I was no longer ‘the man of the house’, although I remained in full-time employment for a further 22 years. MS had relegated me to the second division. That was the first knock to my manliness and many more knocks were to follow over the years. I was afraid of being perceived as lazy as long as my illness remained invisible. That’s not to say I wanted everyone to know I had MS. It was my private torment and I didn’t know how to handle its invisibility. All of the people who mattered to me had learned to live with, and accept, my constraints a long time before I did. I slowly came to realise that I was the only one who looked at me the way I looked at me. Jean never made me feel inadequate or lazy, that was all down to me. My share of the housework was to look after the garden but I always felt I should be doing more. One of my earliest pieces of Assistive Technology was a ride-on lawn mower obviously needed to cut the grass but also to move tools etc. around. Every job took much longer for me, used twice as much energy and in 2014 I threw in the towel on that particular activity. I was never a big drinker but I did enjoy having a few pints. I never had a ‘local’ as such but even that ‘not drinking much’ suffered from MS; I was no longer comfortable going to a pub. The prospect of wobbling my way to the bar or toilet became too much of a struggle and I was very much aware of people watching and silently passing judgment. I’m not drunk I have MS. Men of my age group are not great at discussing and sharing our thoughts and feelings and I am no different. I kept my feelings of inadequacy under tight control. There was no reason to burden anyone else; suck it up and get on with life. I would urge other men living with MS not to suffer in silence but to seek out help and talk about it. Useful links AWARE GROW Irish Men’s Sheds
Wait times for people with Multiple Sclerosis among worst in Europe In advance of MS Ireland’s annual meeting, the organisation has called on Minister Simon Harris to honour a commitment to meet and discuss ending the numerous waits that patients with multiple sclerosis suffer. While the HSE does not currently compile information on waiting times for people with multiple sclerosis[i], the MS Barometer[ii] ranked Ireland’s access to treatment and therapies as 23rd out of 25 countries assessed. Approximately 9,000 people in Ireland are living with MS. In a video released to coincide with the annual meeting, Declan Smith - who was diagnosed in 2014 - said: “You’re looking down the road. I can live a fairly normal life with some adjustments, but I can see it getting worse. I know the Minister told MS Ireland that he would speak to them ‘shortly’, but I don’t know what shortly means because it hasn’t happened yet.” Where statistics are available on the wait times for people with MS, there is evidence that the Irish health system subjects patients to long delays: Long waits for appointments. Following preliminary diagnosis, people with MS wait for their first outpatient appointment with a neurologist (as do patients with other neurological conditions). As of June 2018 over 4,000 people were waiting more than 18 months to see a neurologist[iii]. There are also very long waiting lists to access essential physiotherapy[iv]. Patients with an MS diagnosis also wait for their subsequent appointments: in an MS Ireland survey, 44% of people with MS waited more than six months for their most recent neurologist appointment[v]. Long waits for MRIs: a key step in diagnosis is an MRI scan. According to the MS Atlas[vi], Irish patients’ 12 week wait for an MRI is the longest in Europe (along with Sweden and Denmark). By contrast, in Italy patients wait on average 1 week. Long waits for treatment: People with MS are waiting twice as long as recommended to start treatment. The HSE Model of Care for Neurology Services in Ireland, launched in 2016, recommends that people with multiple sclerosis start active treatment within 6 weeks of initial presentation: the best case scenario at the moment is 3 months[vii]. Long waits for new medicines: In Ireland, the government’s process for making a new medicines available to patients takes an average of 348 days. In some cases it can take over 4 years. Ava Battles, Chief Executive of MS Ireland added: “In July, Minister Harris said in the Dail that he would meet with us to ensure new medicines for MS become available in Ireland. No meeting has taken place. I don’t mind waiting to see the Minister, but patients across Ireland are tired of waiting for appointments, for scans, for treatments, and for medicines that are making a difference to the lives of patients who live in other European countries.” “Waiting years for a medicine that your doctor thinks will help you adds significantly to the uncertainty and stress of MS. Anyone who wants to help people with MS get the medicines they need can send a message to the Minister for Health and your local TDs at patientsdeservebetter.com.”
We need YOUR help in contacting TDs and Senators MS Ireland will be holding an event in Leinster House AV room on Wednesday, 3rd October 2018 at 10am. We will be presenting the MS Care Centre Business Case and we will be using the opportunity to call on TDs and Senators to provide a further €600,000 in annual investment which would allow us to cater for the increased demand on our Care Centre. We need your help in contacting TDs and Senators to ask them to come along to the event – if you can attend your local TD’s clinic, please bring the event to their attention and ask them to go along. You can also email them – you can find who your local TD is and get their contact details using this website: https://www.whoismytd.com/ Below is a draft email that you can use – please feel free to adapt the email to include information on your own personal situation and what their support would mean to you. If you receive a response from your TD saying they intend to go along, please let our Information, Advocacy and Research Assistant Aoife Kirwan know so she can follow up with their office to remind them beforehand – email akirwan@ms-society.ie -------------------- Dear Deputy [insert name of TD], My name is [insert your name]. I am asking you to attend an AV room briefing on Wednesday, 3rd October at 10am. This briefing will be delivered by the Multiple Sclerosis Society of Ireland (MS Ireland) regarding a request MS Ireland has put forward for further annual investment in their care centre. The MS Care Centre is a state-of-the-art respite facility. Admitting and welcoming 400 people annually, the care centre not only provides people living with MS and their caregivers a break but delivers a range of therapeutic services, neurological assessments and social activities. Due to decreased income, the care centre only opens 40 weeks per year. MS Ireland are requesting a further €600,000 in annual investment which would allow them to cater for the increased demand on the service. This would see the care centre open 350 days per year, providing an extra 1,128 bed-nights annually. This would allow additional people living with MS the chance to benefit from what the care centre has to offer (there are over 9,000 people living with MS in Ireland). Further investment will not only support people living with MS, it will also support voluntary carers, without whom care in the home would be impossible, putting further pressure on our health system and hospital funding. [If you have any personal details you would like to add in support of our ask, please feel free to write it in] As a member of your constituency, I am asking that you support MS Ireland by doing what you can to help secure this additional funding. Yours sincerely, [insert your name]
This week Teresa McShane tells us about the financial and professional implications of having MS and discovers it’s an emotional journey. Like any long-term illness or disability, MS can have far reaching implications and can literally turn one’s world upside-down. Obviously, all cases are different and vary in severity but in many cases, not only can one’s physical limitations be seriously challenged but also one’s mental, emotional and, more than likely, financial ones. The career aspirations you had may have to be radically overhauled; the lifestyle you had imagined for yourself and your family revised. And ultimately, in order to keep as well as you can, it may mean giving up work at some stage. I had always loved working; it gave me a sense of purpose and belonging. I worked hard from the age of 18 and despite a diagnosis of MS when I was 23, I carried on in employment, through ups and downs, until I was nearly 40. I felt like a worthy member of society who was contributing. It allowed me to live a semi-normal life. Go shopping, go on holiday or treat myself and not feel guilty. This very sense of value I put on myself boosted my self-esteem and mental wellbeing. Like many of my friends with MS that I have spoken to, I was determined to keep going and not be beaten by this inconvenient illness. We forged on like ‘valiant soldiers’ but really, we should have been minding ourselves and listening to our bodies. We dragged ourselves out of those relapses, so we could keep going… until the next one. We were determined to live a ‘normal’ life but found ourselves in a vicious circle of working too hard, exhaustion and sick leave, until finally we copped ourselves on and realised something had to give - or we didn’t and our bodies called time. And that is exactly what happened. So now that I was no longer working, who was I? What was my purpose? I was a leech, a drain on finances, I needed minding, looking after and being supported financially. That mortgage that we took out together when we were both employed now fell on the head of my husband. The monthly outgoings were still the same, but the income was reduced. And when the recession hit and things were oh, so tough, he was the only one who could drag us out of it. All the while I felt like an impotent bystander, a ‘Sitting Duck’! And so began the downward spiral. That mental wellbeing and sense of value I was talking about started to deteriorate - eroded by guilt and feelings of inadequacy. Slowly at first because when I first had to give up work, I assumed I would just take a break and then get right back in the ring. I didn’t realise that one year… two years… 10 years on I would still be outside the workforce and merely a social welfare statistic. But here I was, and that takes its toll on anyone’s emotional and mental resilience. I know I am lucky. When I ceased working I went on Disability and was transferred to the Invalidity Pension the following year. A weekly payment that allowed me NOT to work. This sounds fantastic, you might think - being paid without having to work. Nice one! And for some people, this is the answer to their prayers. But definitely not for all. Many people of my age (48) with MS, who have worked hard to build their careers and have found themselves on Invalidity Pension yearn to go back to work. For starters, the weekly payment doesn’t come close to the full-time weekly wage they were used to and/or needed. But more importantly, they don’t want to be dependent on the State. They don’t want to be dependent on anyone. But common sense must prevail and accepting the way it is doesn’t have to be defeatist. I have been given a valuable commodity… time. Time to take time, to rest when I need to and time to spend valuable moments with my other ‘valiant soldiers!
Calling all bookworms! Sign up to the MS Readathon, Ireland’s largest and longest-running sponsored read for young people.
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