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
Dublin Neurological Institute are running a free course for carers of people with neurological conditions in September. This course is designed to help carers feel less isolated and helpless. Topics to be covered will include dealing and managing changes in your life, medication management, services in the community, information on entitlements, the Assisted Decision Making Capacity Act and the emotional impact of coping with a neurological disease. The education programme commences on 6th September at 6.30pm in the Nurse Education Centre, Nelson Street, Dublin 7 and there will be four sessions in total. The other sessions will be on 13th, 20th and 27th September. The course is free but pre-booking is essential. To book or make enquiries, please call Regina Prenderville on 01 854 5172.Leave message on voicemail and your call will be returned.Alternatively you can email pha@mater.ie. Further information is available in this leaflet. Please note this programme is not being run by MS Ireland. Any enquiries should be directed to the organisers.
This week from the MS & Me archives series Willeke Van Eeckhoutte discusses people waiting, wondering, dreading, hoping from the Neurology waiting room. It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them has to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this minute onwards, your life will be different, that you will have to change your lifestyle to suit your new, closest and most annoying illness, that your body had betrayed you? People with neurological illnesses walk in and out. Often their illness seem larger than what they perceive themselves to be. For the ones sitting, waiting by themselves, without someone accompanying them, time goes slow. For the ones waiting with their boyfriends, spouses, parents, time is gentler. They talk about fears, or they talk about anything but the reason why they’re there. For me, MS will always be a lonely illness because I am the first in my family who has it. It hampers, harms and sets boundaries where I want none. It shows me that people are vulnerable, open to inner destruction of a central nervous system gone wrong. For me, it is love, friendship, knowledge and joy. It made me who I am today, strong, with the will to live fully. I will not falter, go into self-destruct. I will not go where I am not supposed to go. Stood at my own six feet under in 2008 and I returned. It wasn’t time yet. Waiting room fills with familiar faces with MS… harmed but alive, dreaming and hoping. One day neurology waiting rooms will be empty, MS cured and eradicated. Lives back to the way they used to be. Love. Friendship. Healthy. It is not a dream. It will be reality Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more. Originally published May 2014 from the Neurology waiting room in Beaumont Hospital, Dublin
Expert Reference Group developing clinical guidelines for the access programme In February, the Health Products Regulatory Authority (HPRA) released a report which recommended the establishment of an access programme for medicinal cannabis products for certain named conditions including spasticity associated with MS. MS Ireland cautiously welcomed the HPRA report, whilst still expressing concern that the efficacy, safety and quality of non-pharmaceutical products cannot be guaranteed. MS Ireland nonetheless recognises that many people with MS will welcome the opportunity to be able to legally access such products through the access programme, when it is established. Since February, work has been ongoing to establish the programme. The Department of Health convened an Expert Reference Group, comprising of representation from the areas of Oncology, Palliative care, Anaesthesiology, General Practice, Adult Neurology, Paediatric Neurology, Multiple Sclerosis, Psychiatry, Pharmacy, Patients, Ethics, Health Technology Assessment and the Health Products Regulator. The Expert Reference Group have been working on draft clinical guidance for the cannabis access programme. MS Ireland were invited to provide feedback on these guidelines. A summary of our response is below. MS Ireland will keep all our stakeholders updated on any further developments regarding the access programme. Read the summary of our response here
This week from the MS & Me archives series - Helen Farrell looks at her smartphone use... I have a confession to make; quite often my smartphone gets more of my attention than my husband does, and it is a mutual situation with both of us tapping away in the evening as we read what has happened for friends on Facebook or the like. Years ago I was an avid fan of Star Trek: The Next Generation. In one episode the crew was taken over by a device that had a game so addictive, they were unable to break free of playing it obsessively (“The Game”). Only a young crew member and his friend were able to realise the evil hold the game had on them and free the crew of it. I am reminded of the episode when I find us tapping away on our smartphones, staring at the screens and ignoring each other and the television as we dual-screen to our hearts’ delight. How has this device such power over us? For information-addicts like me, it is a constant source of learning, entertainment, escapism and more. When I think back about what I did during periods of boredom in the past, I remember reading the back of cereal packets, propping up books as I ate, bringing books everywhere with me for a few minutes of escape. My smartphone obsession is probably no different than how I used to behave. However, I notice I am not as relaxed when reading material online. So much to keep up with! So little time! Books are a much more mindful experience and gentle on the eyes. I am now re-cultivating my paper-based reading and it truly does give a greater feeling of relaxation than browsing constantly on my smartphone. Which brings me to a new phrase that I recently learned of, “Sleep Procrastination”? Unfortunately, I have always been prone to the ordinary type of procrastination, relying on the stress of flying by the seat of my pants to wing me through on far too many occasions, although I am improving a little with age! Sleep Procrastination refers to putting off bedtime, or rather, sleeping, in order to read – and it is mostly refers to online reading. It is the cause of sleep deprivation, poorer mental health, weight gain and all manner of bad things. You can read more about it here, but suffice to say we really need to turn off that smartphone or whatever is keeping you up, and prioritise our sleep! Us MS’er’s are already prone to poorer sleep and greater amounts of insomnia, so why are we letting these devices dictate our lights-out time? Just do it! Turn the light off earlier tonight, and you will feel better for it, I promise. Used to our advantage smartphones are wonderful things. I have never found MS-tracking apps useful. All they do is to focus my attention on my MS, and that is the last thing I want to do. It already gets far too much of my time, my life and my energy. But there are a load of apps that I DO find useful and they have improved my level of mindfulness and calm. I have an android device and I favour apps that have a low amount of permission requests (for security reasons) and are free from the Play Store. My favourites are: The Pedometer app is great for showing me when I am starting to slow down. It can track Kmph as well as the normal step count. Not only does it encourage me to keep trying to walk as much as I can manage, if I see my speed dropping it can alert me to a possible need for more rest, or an upcoming relapse. OMM is a cute little 1-minute meditation app that is great for people who are useless at meditation like me. I find I am more likely to do a 1-minute exercise regularly than commit to a longer session. The Mindfulness Bell is great for centering yourself, taking a moment to relax and breathe properly. You can set it to ring at different times, different frequencies; just don’t forget about it heading into a work meeting like I did! Another night I went out walking and I had looked up at a full moon with the clouds racing above me, just as I was about to pass the creepy spot where 2 thieves had been hung in the 1800’s for a violent robbery and the mindfulness bell tolled loudly, making me jump out of my skin! ‘Vowel Please!’ is a Countdown-alike app that’s good for exercising the oul’ grey matter and winding down from all the monkey-mind thoughts and worries whirling around our heads. Whenever a new technology is introduced people tend to fret about it. Some people wrote warning articles in Victorian Britain about the speed of railways and how our health would suffer to travel so much faster than natural horsepower. Microwaves would be capable of frying our brains, destroying our fertility, adulterating our food, frying our fertility. Did these things happen? We can recognise panic in the face of technological advancement, but can we equally recognise when we have become obsessive about being used by a device, rather than using it for our advancement and entertainment? It is up to us to make sure that we are using smartphones to our benefit, rather than them having the power. Let me know what you think of smartphones; good or bad? Do you have any favourite apps? Originally published August 2016
Request from researchers at University of Augusta, US You're invited to participate in this survey exploring the impact, if any, of health literacy on emotional health in people living with multiple sclerosis (MS). The purpose of this survey is to help clinicians and health educators determine whether a person's knowledge of MS can promote well-being. It will take about 25-45 minutes to complete, depending on how many symptoms of MS you are experiencing. In addition to basic demographic, MS-related health, and emotional health questions, the survey asks about your knowledge of interventions for managing MS symptoms, your beliefs about MS, and how you educate yourself about MS. This research will be used to improve health education for the multiple sclerosis community as well as to raise awareness of multiple sclerosis health issues. Read more about the purpose of the research and complete the questionnaire below:
What are the research priorities of the MS Community in Ireland? Have your say!
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