MS Ireland
Informing, Supporting and Caring for the MS Community
Palliative Care Services in Ireland can support the primary care team and hospital teams in responding to complex symptoms – and provide advice about interventions that will maximise the quality of life of the individual with a life limiting disease. Depending on the stage of the disease, this approach is often introduced alongside existing treatments that a patient receives to maximise their independence.
Specialist Palliative care services are provided by the HSE in partnership with voluntary service providers, and these teams work in community settings, acute hospitals and within specialist inpatient units (hospices). Referral to the Specialist Palliative Care team is made by the medical team or GP.
Traditionally specialist palliative care services developed around the needs of people with cancer, however increasingly these services are responding to those with other life limiting disease – including those with MS, who have complex symptoms that cannot be routinely managed by their own specialist or GP. Your local GP, Primary care Team or MS Regional Worker will be able to guide you if this is an area you would like to explore this further. The Irish Hospice Foundation’s Palliative Care for All Programme is currently exploring how palliative care can be extended to everyone who needs it, regardless of the nature of their illness.
As MS progresses, it can be frightening to see your loved one’s abilities change. It is important to talk with your loved one about the kinds of medical care that he/she wants to receive, particularly if MS continues to progress. Talking about this is difficult, but it is crucial if you want to ensure that the wishes of the person with MS are followed in case he/ she can’t communicate those wishes in the future.
Choice belongs to the person who has the illness. Modern medical ethics supports the right of each individual to make his or her own medical decisions within the confines of Irish legislation.
As to cause of death for people with MS, many die of complications related to their disease. However, many also die from issues such as cardiac and vascular disease as well. As more patients with MS survive to older ages, a greater proportion can be expected to die of causes unrelated to MS. It is not unusual for families to uncover conflicts during this process of decision making, as it can trigger strong emotions and unresolved issues. Remember, it is acceptable to agree to disagree.
Often those who are more comfortable with mortality issues can be found on one side and family members who are hoping for a cure and don’t want to talk about end-of-life are on the other. If you know of someone who is skilled in facilitation, invite him or her to the table to help the conversation.
There are many questions that can arise as the end of life approaches. It is important to think about choices that may need to be made. Family members need to be clear on all of these issues:
Decisions revolve around how aggressive medical treatment and management should be. There is no right or wrong answer. It is a matter of personal preference, values, and quality of life. Opinions and thoughts of the same person might differ over time as well, particularly if a critical hospital emergency occurs, so it is important to revisit these medical discussions periodically. See this website for more information on Advanced Healthcare Directives
Because of its focus on quality of life the palliative approach to care is appropriate throughout the journey of those with MS and not just at the end of the life.
For a person with MS, palliative care might include pain relief, the management of swallowing difficulties, or prevention of pressure sores. It could also involve supporting the person to plan ahead and make the most of their life, finding ways to participate and get fulfilment form activities of interest and maintain relationships. Health care professionals are increasingly recognizing the importance of adopting a palliative approach to care of people with MS, and also availing of the advice and support of the specialist palliative care team for symptoms that are complex.
Palliative care can be utilised as a complement to MS comprehensive care; ideally both can be provided in an integrated way to enhance the care that each can offer the person with complex or challenging symptoms and help them plan for their future.
The palliative approach also provides support to families and/or those who are important to the patient, and extends its reach into bereavement. This holistic approach to care should integrated into the routine care of those with life limiting diseases and available in all care settings – i.e. people’s homes, a hospital or a residential care setting, as well as the actual hospice building.
There is no question that it is not always easy to identify a terminal phase of MS, even if someone has been confined to bed with significant health issues for a long time. However, if your loved one is clinically compromised and coping with significant respiratory weakness, UTI infections leading to sepsis, critical nutritional impairment, or other life threatening complications, you might look into hospice as a potential support for you. Although there is no definitive check-list that end of life is near, these might be triggers for seeking hospice support:
Watch talks from Professor Gavin Giovanonni; Dr. Jens Bansi; Dr. Kate O Brien, Genomics Medicine Ireland; Dr. Sabina Brennan.
Download MS Ireland's Care Centre Business Case, presented to TDs and Senators in Leinster House.
My name is Maggie Green… I live in Donegal with my two beautiful children, Abigail (8) and Conor (7), my partner Danny and my Great Dane Blue. I was diagnosed in October 2016 with Relasping Remitting MS ( RRMS) and to say that it came as a shock is an understatement! What I thought was a trapped nerve, turned out to be a life changing diagnosis! Initially, we were terrified and all I could focus on were worst case scenarios, but when I was referred to Professor Niall Tubridy in St. Vincent's Hospital this was a big turning point for me. He helped me to realise that I just needed to keep living my life and to manage my MS as effectively as possible. He also helped me to focus on the positives rather than the negatives. Overall, I have been pretty lucky and I count my blessings every day! I work full time as a primary school teacher, teaching children with autism in Letterkenny Educate Together National School and I love my job. The children I teach are incredible and they teach me something new every single day. My Support Network I come from a very big family and they have been wonderful. They are always there for us when things get tough, and sometimes when you live with MS things can get particularly tough. They are always just a phone call away ready to help in any way they can. My mother and father have been unbelievably supportive and I don't think that we would have gotten through the last few years without them. My children Abigail and Conor know that I have MS and know that sometimes I get very tired easily. They know that my body doesn't always do what I want it to do! We've explained to them that it’s a bit like a computer that has a few faults! Why am I taking part in the Mini Marathon this year? I want to raise more awareness about MS. I want to help raise funds for MS Ireland and the amazing supports they provide to people like me living with MS. I can't change the fact that I have MS but I feel that I need to do something so my something is trying to contribute to the MS community in some small way. I feel really lucky that I am physically able to do this. Although I might not be saying that by the end of the Mini Marathon!!! My partner Danny and I are getting married four weeks after the Mini Marathon and I cannot wait to walk up the aisle and share our special day with family and friends. We have come through a lot but MS is just one part of our story. You can still join Maggie & Team MS Ireland on the 2nd June. Sign up today! Or get in touch with Melanie at melaniec@ms-society.ie #GetActiveForMS
NEW Research shows that 44% of Irish people have poor understanding of the symptoms and nature of Multiple Sclerosis (MS)[1] Research study commissioned by MS Ireland and Novartis Ireland to mark World MS Day 2019 explores the public’s awareness of the visible and invisible symptoms of MS 93% of people in Ireland claim to be aware of MS, more than 44% consider their understanding of the symptoms and details of the condition to be poor with nearly one third of respondents unable to list any symptoms related to MS.1 This new research conducted in April 2019 by IPSOS/MRBI, was revealed to mark World MS Day on 30th May 2019 by MS Ireland and Novartis who join with MS organisations around the world as part of the ‘My Invisible MS’ (#MyInvisibleMS) campaign exploring public awareness around the invisible symptoms of MS and the impact it can have on day to day life. Although more than a third of the population (37%) claim to have a family member, friend, or loved one living with MS, and 66% of people in Ireland believe they have a good understanding of MS, there are still some key aspects of the condition that remain unclear.1 When asked if MS was more prevalent amongst men or women, almost half (45%) of participants responded that MS affects men and women equally. In fact, MS is at least two to three times more common in women than in men.[2] Nine thousand people and their family members live with Multiple Sclerosis across Ireland. Although MS is a progressive neurological condition that can affect a person’s health, lifestyle and relationships, many people with MS find ways to manage and cope with many of the effects and difficulties. Symptoms vary from person to person and each person is affected by the condition differently. Some of the symptoms of MS are immediately obvious. Reduced mobility is often the most visually apparent. Other symptoms such as fatigue, changes in sensation, memory and concentration problems are often ‘invisible’ symptoms and can be difficult to explain to others. Ava Battles, Chief Executive of MS Ireland said, “While many people are aware of MS and the more visible, tangible symptoms that it can cause, the effects of MS can vary greatly from person to person and can often be invisible to those around them. Through this research and our World MS Day activity we hope to raise awareness around the less visible aspects of MS and how it can impact on the day to day life of a person living with the condition.” Loretto Callaghan, General Manager and Country President, Novartis Ireland commented, “We are delighted to support MS Ireland on World MS Day and to bring the results of this research study to the general public. It is so important that the community of people living with MS in Ireland feel that their condition is properly understood by their peers and this is something that can only happen by spreading awareness through initiatives such as World MS Day.” Levels of awareness around the more visible symptoms of MS among the public are relatively high with almost 20% of those surveyed listing muscle degeneration, and 17% naming loss of mobility.1 Only 8% of people identified fatigue as a key symptom despite almost 90% of people living with MS reporting fatigue as a consequence of their condition.1,[3] Commenting on the launch of the research findings, Professor Orla Hardiman, Consultant Neurologist at Beaumont Hospital, Professor of Neurology and Head of the Academic Unit of Neurology in Trinity College Dublin and the HSE National Clinical Lead for Neurology said, “The research findings highlight how prevalent MS is in our society today with nearly 40% of the population being impacted either directly or indirectly by the condition. It’s important that as a community we educate ourselves on the symptoms that affect the day to day lives of people living with MS, especially those that are not immediately apparent and less visible.” Sharon Henvey, World MS Day spokesperson said, “As someone living with Multiple Sclerosis for the past 10 years, World MS Day is a day that means so much to me and my family. It’s a day that shines a spotlight on the 9,000 people in Ireland living with MS and what life is like for us. The theme for this year’s campaign is visibility which I think is crucially important, as some of the symptoms I experience are unseen. I do at times feel that my MS is invisible which can be hard to explain to friends and family, so hopefully, the campaign can create awareness of these unseen symptoms” Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019. [1] Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019. [2] MS Ireland website Available here [3] Societal Cost of Multiple Sclerosis in Ireland 2015 [online]. Available here
Short Story Evening to mark World MS Day Greystones Scribbles - now in its tenth year, would like to invite you to an evening of original short stories at the Glenview Hotel on Thursday, May 30th for a 7.30 pm start until 9.00 pm. Admission is just €7 to include a complimentary glass of wine/soft drink. All proceeds to MS Ireland's East Wicklow Branch. Get in touch Text Mark Mitchell at 087 2453 193.
Local Authority and European Parliament Elections With Local Authority and European Parliament Elections around the corner, now is the time to raise local issues with candidates seeking your vote. MS Ireland are members of the Disability Federation of Ireland (DFI) and the Neurological Alliance of Ireland (NAI). We are supporting their campaigns to make disability and neurology top priorities for candidates in both the Local Authority and European Parliament Elections. We are asking you to get involved too! Local Authority Elections Accessibility Are there accessibility issues in your area? Are there uneven pathways? Are there pedestrian lights that don’t give you adequate time to cross the road? Think about the accessibility issues you face locally. Ask your local authority candidates to commit to ensuring local public services and buildings are accessible for people who live with a disability. Participation Are you aware if people living with disabilities are involved with current decision-making structures locally? Can your local candidate tell you about Public Participation Networks? Ask your candidate to commit to ensure that people living with disabilities are encouraged to take part in local decision making. Planning Is your local candidate aware of the United Nations Convention on the Rights of People with Disabilities (UNCRPD)? Do they know what changes need to be made locally to comply with this convention? Ask your candidate to commit to ensuring that your local authority publishes its implementation plan for the UNCRPD by 2020. Don’t forget to mention the MS Care Centre Business Case In addition to having the power to influence local change, candidates for local authority often have the capacity to raise issues with TD’s and Senators. If a candidate asks for your vote, please make them aware of the MS Ireland Care Centre Business Case and ask them to raise the issue with Elected Local Representatives. The Care Centre Business Case can be downloaded here European Elections European Parliament hopefuls are being asked to pledge support in a number of key areas; Accessibility & Equality Ask European Parliament candidates to commit to making products, services and infrastructure accessible to people with disabilities and to stop discrimination. Ask European Parliament candidates to commit to working at and EU level to ensure equitable access to treatments, services and supports for people with neurological conditions. Investment Ask European Parliament candidates to support the investment of European funds in persons with disabilities. Support Ask European Parliament candidates to support the aims and objectives of the Members of European Parliament (MEP) interest group on Brain, Mind and Pain. Ask your European Parliament candidate to work at EU level to increase awareness of neurological conditions as a major public health and social care issue. Ask candidates to commit to their support on Twitter using #DisabilityVotesCount and #LoveYourBrain2019 Further information: www.disability-federation.ie www.nai.ie
NUI Galway are recruiting Applications are invited from suitably qualified candidates for a part-time, fixed term position (20% FTE) as a Patient Representative Research Assistant with the Discipline of Occupational Therapy at the National University of Ireland, Galway. This position is funded by Health Research Board and is available from July 1st 2019. This is a specific purpose contract circa 30 months. Information on project: The post is an exciting opportunity to be part of a research study of a cognitive rehabilitation intervention for people living with multiple sclerosis. Some people with multiple sclerosis have cognitive symptoms (e.g. difficulty with memory, processing information, attention) that impact their daily lives. The lead researcher has developed a new occupational therapy programme for people with multiple sclerosis that aims to help people deal with these symptoms. The programme will be assessed in this study. How to apply: Applications to include a covering letter, CV, and the contact details of two referees should be sent, via e-mail (in word or PDF only) to Dr Sinéad Hynes at sinead.hynes@nuigalway.ie Please put reference number NUIG-079-19 in subject line of e-mail application.Or by post to Dr Sinéad Hynes, Lecturer in Occupational Therapy, School of Health Sciences, Áras Moyola, NUI Galway. Closing date for receipt of applications: Friday 31st May 2019 at 5.00 pm Interviews are planned to be held on 11th June 2019 All positions are recruited in line with Open, Transparent, Merit (OTM) and Competency based recruitment. National University of Ireland, Galway is an equal opportunities employer.
is a campaign about hope, that together we can raise funds to accelerate Irish and global research into MS and continue to provide services to over 9000 people living with MS In Ireland. Join the campaign NOW!
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