2021 has been an eventful year. The COVID pandemic is still around and it has changed so many lives, for good and bad. For now, we do not know what further impact it will have, but I know its impact on me. In this post, I am going to share how it has helped shape …
2021 Patient Advocacy & Me, what an amazing year Read More »
Pacing is very important when you live with MS. Over the last week my illnesses punished me with more pain and fatigue, because I forgot this rule.
Recently, I have been involved in two different projects. Both of which involved me sharing some of my experience of living with Multiple Sclerosis. Progressive MS Webinar Series The first is the Progressive MS Webinar Series, which I am hosting, and is in collaboration with the MS Society of Ireland. The first webinar, about Isolation, …
Yesterday I was at a meeting, which was discussing policy. This seems quite abstract as I write it, and perhaps it is. What happens once a policy is written? If it is a large organisation it acts as a rudder, guiding the activities of sections of the activity. This will have an impact on the …
Yesterday I had the honour of being a keynote speaker at a conference which focused on including patients in research. By this I mean people who live with illnesses should be equal members of the research team, deciding what will be researched and how the research is conducted. The phrase we often use is: Nothing …
This morning I had the honour of presenting to the PPI Ignite PPI Annual Conference. As the first speaker at the meeting I wanted to share how I see Patient Involvement in research. 17 years ago I tried to get the Irish government to trial a medicine which I have found works well at treating …
Sharing my experience of being a Patient Advocate Read More »
