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:
Advice and support on all matters of dying, death and bereavement
Briefing Document and Position Paper on the need for an MS registry in Ireland MS Ireland has produced a Briefing Document and Position Paper on the need to establish an MS Patient Registry in Ireland. The paper outlines: What patient registries are Why registries are important Current patient registries in Ireland MS registries internationally MS Ireland’s position and recommendations The paper can be accessed here This document has been prepared by Harriet Doig, Information, Advocacy & Research Officer, MS Ireland. Questions and comments can be directed to harrietd@ms-society.ie
Global experts publish recommendations for overcoming challenges to improve clinical trials in progressive MS A special issue of Multiple Sclerosis Journal, sponsored by the International Progressive MS Alliance, has been published, containing papers that review the challenges and the potential solutions to improving clinical trials and their outcomes so that new treatments become available for people living with progressive MS. All of the papers are available to view and share Topics covered include: The evolving role of people with MS in clinical research - Some progress but more is needed Progressive MS trials: Lessons learned Targets of therapy in progressive MS Fluid biomarker and electrophysiological outcome measures for progressive MS trials
Hearing loss, or impaired hearing, is an uncommon symptom of MS, Helen Farrell discusses the affect it has on her daily life. There was a documentary on Lauren Bacall, actor, on television that morning, the movie star of Hollywood’s golden age. I had a virus, or so I thought, and I was taking antibiotics and feeling off-balance. It was nice to have the flat to myself and watch some tv biographies while my flatmates were at work. Suddenly, I realised I must be sitting on the remote control, as Bacall’s smooth voice trailed off into quietness. But how peculiar! The remote was beside me, and I wasn’t sitting on the volume button after all. Darts of fear shot through my stomach as I realised that the television was fine, it was the hearing in my right ear that wasn’t. In those 10 seconds, it disappeared totally, never to return. Two hours later I found I was unable to walk in a straight line or make it down the stairs, and I really started to panic in earnest. I thought I might have had a stroke. A hospital admission, an MRI and two lumbar punctures later, and I was told I had MS; that was 19 years ago. 1 in 1,000 of us in Ireland will be diagnosed with MS, but it is “exceedingly rare” to have permanent deafness from MS. Yep, I feel so goddamn special. Deafness often goes together with tinnitus, a roaring, grating, rushing noise constantly roaring in my deaf ear, but I don’t notice it any more. It’s amazing what we can adapt to and accept as normal. Another MS-friend has tinnitus too, but no deafness, so having tinnitus doesn’t necessarily mean you’re going to lose your hearing. A friend-of-a-friend with MS lost her hearing in one ear for six months, and then one day her full hearing returned. In fact, it’s far more likely that even if you lose your hearing that it will return, when you’ve MS. My case is not a common one. I believed for a long time that that my hearing would return too, but I eventually accepted that it was gone for good, or until they find “the cure”. To use a hearing-aid you must have some residual hearing. I have nothing, unless it’s over 80 decibels (like a loud motorbike) so a hearing aid would be useless to me. The neurologist and audiologist tried to locate the lesion that was causing the deafness, but they couldn’t pinpoint it. Because the sudden deafness happened during a severe MS-relapse, it’s nearly certain that MS caused it. I had severe balance problems during that relapse too, so it’s likely that a lesion in the brainstem caused both issues. I have become very protective of my remaining hearing. Previously I loved live gigs and concerts, loud music on my headphones, but now even a trip to the cinema has me bringing a soft earplug (you only need one when you’re unilaterally deaf!) to protect my good ear. It must be admitted that there are some small benefits. One deaf ear is very handy for cutting out chatter in the open plan, being able to make a call in a noisy setting, or rolling over onto your good side to get a peaceful sleep. I can also understand people in noisy places better than most, as I rely on lip-reading a lot in these kinds of places. One-to-one, I don’t encounter any issues with hearing people; it’s background noise that can make it challenging. With only one ear hearing, you can’t locate the direction of sounds; it all sounds like it’s coming from the left! I’d a funny episode with a very crotchety oul’ wan in Arnotts a few years ago, while waiting for the lingerie changing-rooms. I eventually realised this half-clothed older lady in one of the cubicles was frantically hailing me to ask me to call the shop assistant back. She must have tried a few times to get my attention before I’d responded because she grumpily spat out “are you deaf, or what?”. I smiled and said pleasantly, “I am actually; deaf as a post in my right ear”. The look of mortification on her face was very amusing! All joking aside, deafness is a serious issue to deal with, as is any loss in a functional system. In the past I used to dread the frequent relapses that rolled in every few months; you never knew what you’d lose each time. With the newer MS medications that are now available, I don’t worry about relapses any more. My MS has reached a level of stability I never thought possible. Maybe, in time, and with new discoveries yet to be made, we can even start fixing things that got broken along the way. More Information: Hearing Loss, NMSS Hearing Problems, MS Trust How to Look After Your Hearing, HSE 10 Tips For Looking After Your Hearing
First ever patient survey of outpatient neurology services now calling for responses The Neurological Alliance of Ireland (NAI), the umbrella representing over 30 patient organisations, in partnership with the National Clinical Programme in Neurology, has launched the first ever patient experience survey of outpatient neurology services in Ireland. This survey represents an important opportunity for people with neurological conditions and their families to share their experiences of neurology services in order to identify areas of the service that can be improved over time. Tell Us What You Think To find out more about the survey and how you can complete it please download information leaflet Closing date for completing the survey: Friday, 15th December 2017
Majority prefers hard copy to ebooks with almost half visiting the library according to MS Readathon survey Seventy-six per cent of people prefer to read from a hard copy book versus an ebook or audio, according to a survey marking 30 years of the MS Readathon. Most of Ireland’s readers have their own personal library at home (92%) and read primarily for leisure (95%). 4% read for research. Almost half of those surveyed visit the public library for the most part to check out a book (76%), while 19% attend events at the library and 5% access the internet or use a computer. At 95%, almost all believe it is highly important for children to form the habit of reading in a world of screens. There is still time to sign up for the MS Readathon and Multiple Sclerosis Ireland is encouraging schools and home readers to take part in the sponsored reading initiative. The reading month will take place from October 13th to November 13th 2017. Please visit www.msreadathon.ie to find out more. Felicity Dahl launched the 30th MS Readathon joining MS ambassador, Michelle Hanley, 27, from Cork who is living with MS, and her two children, Abbey and Alex. Felicity’s late husband, Roald Dahl launched the first ever MS Readathon in 1988. She referred to the well-loved author’s words: “Roald once said, 'if you can learn to treat books as your friends when you are young, you will always be able to cope with the tougher [more serious] ones in later life’.” Reading a book is the number one way to spend down-time for more than half of respondents, followed respectively by watching television at 23%, scrolling through apps on a mobile or tablet at 12%, surfing the web at 11% and lastly, checking emails. According to the MS Readathon survey, 42% are happy to read anywhere, 38% read in bed, 14% on the couch and 6% read on public transport. 1 in 10 claimed that they would like to read more (12%). Survey marks 30 years of the sponsored reading initiative for Multiple Sclerosis Ireland proudly supported by Heinz. Thanks to everyone for taking part!
Get active for MS and sign up to trek with us in 2018. Challenge yourself to trek to Everest Base Camp or join us in Jordan or Italy. The choice is yours!
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24 October 2017: Ongoing Group physiotherapist led exercise classes for people with MS
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