This MPN Voice ‘virtual’ patient support event focussing on managing the emotional and wellbeing aspects for people with MPNs during the COVID-19 pandemic, keeping safe and living well during the uncertainty. With speakers from Cork and Dublin offering coping strategies and ways to stay safe. All information in the videos was correct as of 28th November 2020.
Full event video – this video is the full session of the MPN Voice ‘Virtual’ Patient Support Event – Ireland, held on 28th November 2020, and features all the talks and the live panel Q&A session.
Welcome and introduction to MPN Voice and the patient support event – Nona Baker, Vice Chair MPN Voice, welcomes all attendees to the patient support event.
MPN Voice finance and funding – Tim Ellis, Chief Financial Officer MPN Voice. In this video, Tim Ellis speaks of his MPN diagnosis and subsequent treatment journey. As Chief Financial Officer, Tim then outlines the management structure of MPN Voice before highlighting the organisation’s current and past 2-year expenditure.
Managing emotional distress and living well amid uncertainty – Dr Tara Houlihan, Senior Clinical Psychologist Mercy University Hospital, Cork. In this video, Dr Tara Houlihan explains how emergency events, such as the COVID-19 pandemic, affect people and the common and normal experiences that result. Tara then suggests self-care methods and how to manage emotional distress, boost emotional well-being and live well.
Keeping safe and what to expect when coming to clinic – CNS Avril Gleeson, Mercy University Hospital. In this video, Avril Gleeson describes helpful hints and tips on how to keep yourself safe both when visiting clinic and during daily activities, such as hand sanitising and safely using a face covering. Avril also explains how and when hospital appointments and telephone consultations are used in line with COVID guidelines.
Fatigue and sleep challenges – CNS and Systemic Psychotherapist and Complementary Therapist, Mary Moriarty, provides an overview of the topics of fatigue and sleep: what is fatigue, its effects, causes, what you can do to manage fatigue and appropriate coping strategies.
ET patient talk Pat Murphy – Pat describes his journey with ET from his diagnosis, his medication history to how he overcame challenges at home.
ET patient talk Maëlla Roué – Maëlla describes her journey with ET, from her childhood symptoms to diagnosis in more recent years. Further, Maëlla talks about her own fundraising for MPN Voice and expresses her gratitude for the charity.