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 our Living Well with MS conference 2018 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.
This week, Joan Jordan champions her professional revitalisation and shares with us all the joys of returning to the workforce. Sorry for the spoiler in the title. You already know how this one is going to play out. Girl studies hard and gets a computer science place in Trinity College. Girl works her arse off and builds a nice little life for herself and her family. Girl is winning. Girl firmly believes that bad things happen to other people. She has plans, you see…… Mike Tyson nailed it when he said, “everyone has a plan ‘till they get punched in the mouth.” Next thing- girl is punch drunk and wondering how on earth she got into this position? More importantly, how was she going to get out of it? When the editorial team asked me what they wanted to write about this week, I must say that I felt a bit anxious. I still feel shame over having to throw in the towel and stop working in 2009. I didn’t get formally diagnosed until 2010 and until then, lived with the unsettling conviction that something was really, really, really, wrong with me. I HAD to stop working. End of story. It was destroying me every day. Not knowing what was destroying me made it even worse. People like explanations and I just did not have one to give. I didn’t realise how important having a job was to my standing in society. It’s one thing to stop working as a lifestyle decision – another entirely when you feel forced into it. People ask difficult questions. Social outings and meeting new people became awkward. I also felt terribly guilty about not having my own money. Actually, the story didn’t end there. After chasing a lot of dead ends, I retrained and now work 15 hours a week from home. I do my work in the mornings before cog-fog sets in. My business card says that I am the EUPATI Content Coordinator. I love my job and do not take it for granted for a second. I’m even happy to be back paying taxes! Long story short, it was not easy to get back into gainful employment, but it is possible. If one good thing has out of all I went through when I had to stop working, it’s that I learned more about compassion. Being kind is important (and that includes being kind to yourself). Don’t judge others when you are not standing in their shoes. If you feel that you are stuck in a situation through no fault of your own- seek help. I’m glad I went to Citizens Information to find out what my options were when I had to stop working. Dedicated to MS Without whom this blog would not have been possible.
A Health Research Board funded study called ‘Patients’ Preferences for Health’ are looking for volunteers You are invited to participate in a study which will explore “Patients’ Preferences for Health”. In general, people have preferences of being in one state of health over another. This can often be a preference to have good health over bad, or to be in good health for so long and to be in less well health for a shorter period of time. By asking the public in Ireland to make these decisions or trade-offs we can say something about the general preferences of people in Ireland. Preferences gathered in this way are often used to guide choices around decisions in relation to health and using preferences from the general public is deemed to be a fair way of deciding on how to assign healthcare resources. However, it is likely that a person’s experience of being in a health state will alter their preferences compared against those who are only imagining being in that state. As such, this work will examine the differences between patients with Multiple Sclerosis (MS) valuations of health states, and those of the general population to see if this is actually the case. Before you decide whether you would like to be part of this research study, it is important that you understand why we are carrying out this research and what it will involve. Download participant information Get in touch If you are interested in helping with this study, please contact Dr. Stephen Erskine at erskines@tcd.ie
NCPE report The National Centre for Pharmaco-economics (NCPE) have completed their evaluation of Ocrelizumab for the treatment of adult patients with early primary progressive Multiple Sclerosis (PPMS), and have sent the final report to the HSE CPU. The web summary is now available on the National Centre for Pharmacoeconomics website. >> Read more The NCPE report recommends that ocrelizumab for the treatment of adult patients with early PPMS not be considered for reimbursement. MS Ireland have secured a meeting with the Minister for Health, Simon Harris on October 25th in relation to the issues of access to medicines. Related articles March 2018 >> January 2018 >> Access to Medicines Campaign Handbook >>
Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people. Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many. It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets. People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be. At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer. MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card. Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support. Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease. Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS. It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future. All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us.
Briefing in Leinster House Today, MS Ireland presented the MS Care Centre Business Case to TDs and Senators in Leinster House. We were overwhelmed by the support shown by your local representatives at today's event. In a video released to coincide with the presentation, Mark Mitchell shares why further investment is important and the services offered at the Care Centre. Watch here 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 due to the increased demand on the service. This would see the Care Centre open 350 days per year from 2019 and provide an extra 1,128 bed-nights annually. MS Ireland will continue to campaign to secure additional funding to open our respite service 350 days per year. Thank you for contacting your local representatives. Your involvement and action makes a difference. #ISupportMS
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