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:
Shares your tips for living well with MS. #LifewithMS
Advice and support on all matters of dying, death and bereavement
This week Joan Jordan speaks powerfully about the reality of living on a fixed income. She shares with us the value of being honest about financial issues to ensure you don’t miss out on life. I will NEVER lose the thrill of getting my first ever, real, grown-up pay-check. Emergency tax couldn’t dull the buzz of having my own money which I could spend on whatever my 22-year-old heart desired. The cash was mine and the shops were calling. Oasis first! I swanned past the 70% off rail and noticed an avocado green suede skirt winking at me coquettishly. I tried on the timeless classic and handed over the notes. I loved it! Buying stuff with my own money rocked! Since I got diagnosed with MS, I guess I have adjusted my lifestyle considerably. You could say that I am cutting my green suede to meet my measure- which is currently postage-stamp sized. I need to watch out for getting trapped into expensive events where the champagne is flowing and the bill is split at the end. I know the price of everything and the 70% off rail is the only place that is not off limits in Oasis. Digging deeper- having my own money which I had earned myself gave me a sense of worth. Now that I don’t have my own cash, I feel a loss of independence and certainly a huge amount of guilt that I can no longer support my family financially. I have an honours degree in Computer Science from Trinity College and a EUPATI qualification (patient education) but despite many applications, I haven’t even been given a single interview since I got diagnosed in 2010. This gets discouraging after a while and my confidence has certainly taken a bashing. I do worry about the future and how we will manage financially. It’s hard not to. Currently, one ad on the TV really irks me. It’s about Kate and Mick. It’s the last day of their mortgage and it ends up with Kate remarking that despite their trials and tribulations- “We just KNEW we could make it work”. I want to make it work Kate- believe me I do. Sometimes, things outside your control happen and try as hard as you can, it just won’t work anymore…. Having lived on a tight budget for a few years now, my advice would be to take a good look at how you are currently spending your money. Cut out what you consider frivolous but be careful not to launch into full blown austerity. If you really like the branded ketchup- then let it remain on the shopping list. If the fancy coffee to mark the end of the week makes you feel better- then relish every drop and don’t let yourself feel guilty about it. If you get invited to an occasion, be clear that you are covering your own costs. If you can’t possibly afford it- don’t go! If you really can’t make ends meet, talk to somebody you can trust or even your local Citizens Information to check that you are getting all your entitlements. Denying the problem doesn’t help. Have you got any tips on managing your money while living with MS? I would love to hear them. **IPPOSSI, The Irish Platform for Patient Organisations, Science and Industry, is developing a Patient Education Programme in Health Innovation. Apply before the 30th June to take part.
Hello, my name is Caroline Brennan and I was diagnosed with MS in May 2014. I experienced prolonged symptoms both before and after my diagnosis and got no relief from disease modifying drugs- just a selection of side-effects. As crazy as this may sound, I now count my diagnosis as one of the greatest blessings in my life. MS made me dig deep within for life skills that I otherwise may have never acquired. I have been forced to take a thorough inventory of my life and MS has been my toughest but greatest teacher. It has taught me a deep sense of appreciation for both my mind and body and all of the miraculous things that these aspects of me can do. I have chosen to focus my attention on the things I can do and this has served me very well. I treat my body with respect, as if it is an irreplaceable machine and I fuel it with organic, wholesome, nutritious foods. I protect it from chemicals, additives and preservatives and in turn it responds positively. I give it rest when it signals to me that it has had enough and I cool it down at the first sign of overheating. In short, I have learned to listen, deeply, to my body. When I walk I am focused on walking. I am appreciating every successful step I take. When I shower I am focused on showering, appreciating the flow of the water. When I eat, I am focused on tasting, chewing, swallowing. The old me was too busy thinking about the next task to notice the details of these daily rituals and so deeply entrenched in mental chatter that I was totally unaware as to what I was actually doing in the present moment. But that is only a small part of my journey thus far. I have also learned the importance of being very selective in relation to the story I tell about myself. I am me first and foremost. I am not the sum total of my experiences and I am not my MS. It is not the most defining thing about me. I start every day reciting a list of positive affirmations silently to myself. This practise sustains me so well that I would not even entertain beginning my day without reminding myself of all the good things that are housed within myself. Try it! What works for me is: “I am kind, I am loving, I am content, I am hopeful, I am blessed, I am supported, I am looking forward, I am doing my best and I am inspired.” These are just some of my favourites. It doesn’t really matter what the mantra is - the principle behind the concept is that the words “I am” are incredibly powerful. Starting my day in this way uplifts my mood and sets the tone for the day ahead. There are lots of other tips and tricks I have learned along my MS path. Its’ been quite the journey so far and (here’s another affirmation for you…) I am only getting started! PS. I am mother to a five-year-old boy, I am a wife, I am a daughter and I am a practising lawyer. I am also skydiving in support of MS Ireland on 15th July!
Research participants needed You are invited to participate in a study that will evaluate the validity of a speech pathology specific questionnaire for persons with Multiple Sclerosis (pMS). In this study, you are invited to complete an online survey. The questions in the survey will include a range of relevant topics such type of MS, voice quality, swallowing, language, and the state of your social and psychological wellbeing. After two weeks, you will be asked to complete some of the questions again. Who is eligible? Aged 18 years or over; Diagnosis of Multiple Sclerosis; English speaking; Ability to complete the questionnaire. What does this study involve for participants? This survey will obtain information about your overall health status and daily routines. This survey will explore the impacts of Multiple Sclerosis disease on areas like swallowing, speech voice and communication. Participating in this survey is voluntary and we appreciate your time when participating. You have the opportunity to win one of two $50 gift vouchers if you complete the two questionnaires. A donation of $2 will also be made to MS Australia for each completed questionnaire, with a maximum of $500. The questionnaire can be found on: https://www.surveymonkey.com/r/SpeechPathologyMS Further reading Participant Informed Consent Form Ethic Approval Get in touch If you want more information on this project, please feel free to contact Dr. Hans Bogaardt at 02 -‐ 9351 9334 or email: hans.bogaardt@sydney.edu.au. A multi‐page Patient Information Statement, describing the study in detail, is available and will be sent to anyone who expresses their interest in this study. The ethical aspects of this study have been approved by The University of Sydney HREC (Protocol no. 2017/197) Discipline of Speech Pathology Faculty of Health Sciences S Block Cumberland Campus C42, 75 East Street, LidcombeNSW 2141 Australia T +61 2 9351 9539 F +61 2 9351 9163 E speech.clinic@sydney.edu.au
Developing new resources Researchers at Trinity College Dublin have developed four short, animated films about multiple sclerosis. They are looking for people living with MS, people who work with them, and their relatives, friends and loved ones to complete short surveys on the films in order to learn from their experiences of the films and to inform the development of future resources for people with MS. The videos and surveys can be accessed at the below links until Monday, July 17th: Video 1: How does MS affect my brain? Survey 1: How does MS affect my brain? Video 2: How does MS affect my cognitive function? Survey 2: How does MS affect my cognitive function? Video 3: What is cognitive reserve? Survey 3: What is cognitive reserve? Video 4: How can I keep my brain healthy? Survey 4: How can I keep my brain healthy? Thank you in advance - your participation will be invaluable in helping them to improve the resources they develop for people with MS.
Want to get Educated? Want to get involved? IPPOSI Patient Education Programme is now open for applications! The call for applications to the IPPOSI-led Patient Education Programme in Health Innovation is now open. This 6-month blended-learning education programme, the first of its kind in Ireland, is being piloted from Sept 2017 to March 2018, on a number of IPPOSI-relevant topics (see below). The pilot programme is being led by IPPOSI, in partnership with a number of education partners, and will cover the following topics: Understanding Clinical Trials – delivered by the University College Dublin Clinical Research Centre Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance and Pharmacoepidemiology – delivered by the Health Products Regulatory Authority (HPRA) Health Technology Assessment principles and practices – delivered by the Dept. of Medicine & Therapeutics, Trinity College Dublin, in association with the National Centre for Pharmacoeconomics (NCPE) All of the information you need to complete the application - including a Guide for Applicants, and a link to the online application form - are available on the IPPOSI website. Closing date for applications is 5pm on Friday, June 30th 2017
Can you imagine the adrenalin rush after jumping out of a plane at 10,000FT? Well wonder no more! Sign up to our Skydive for MS in September 2017 and find out for yourself!
Find out moreJun
25
Jun
25
Jun
26
Jun
26
Jun
26
Jun
26
Jun
26
Jun
26
Jun
26
Jun
26
25 June 2017: Collection at Moyvane Church in aid of the Kerry North Branch of MS Ireland.
View all events
Change text size: