turn up the volume!

A marble rotunda, some dodgy mikes, and, at about 24.30 mins through the ‘discussion session’, me…

Click for video

(You can see the rest of the presentations as well, if you’re really keen)

Oddly, my children are hugely underwhelmed by my “Oh, oh, oh, come and see me. Talking. I’m on the internet.” Their reaction has been a polite version of “and what?”. Pah! Pesky kids and their whole wide world views…

11 thoughts on “turn up the volume!

  1. I can see you! Will put aside some time to watch later. 🙂 I shared the transcript of your talk with some colleagues and it had quite an impact.
    Are OTs and other paramedics involved?

    1. Isobel, thank you for sharing.
      There is a new PSP care pathway which we circulate if possible. http://www.pspassociation.org.uk/for-professionals/

      I’m not sure if any OTs were at the event, but the person responsible for commissioning all Allied Health Professional services in NI was, and I’ve bent her ear more than once! Kindly, she doesn’t run away when she sees me approach

  2. I watched the whole beginning and through your presentation, Fiona! I was very impressed by the content as well as your poise. That had to be very hard, since it seemed to me that on the panel you may have been the only representative speaking directly from the position of a family-patient position. It’s so personal to you and you did such a good job of being”real” without being emotional. I can see that you are very good in this role. This video really gives me a much clearer direct line to your overall aims. I loved it when the moderator told the audience that if they were uncomfortable asking a question they could tweet it! Comments like that should indicate how much more cooperation and sharing of information and support will be there in the future. In some ways you’re just getting started and it is still impressive. This was great to see!

    1. Debra, you’re right- that panel was full of clinicians, the professors of complicated things and policy types. And me. There were three sessions- each had some patient/ family input. For me, an issue was believing that I was as much an expert in my experience as they are in theirs; I wasn’t a token panel person.
      We’ve taken a lot of learning from the event. Considering the charity is only a year old, we’re doing ok 🙂

  3. Fiona, bravo. You spoke with such clarity and passion (and you have an awesome manicure.) In scrolling around the link, it looks like a lot of people turned out for this event, and people are having much needed discussions about the impacts of rare diseases on patients, their families and the greater world. Did you ever think you’d end up on a stage when you started on this journey?

    1. I was pleased with my nails 🙂
      Andra, when I started volunteering for the PSP association I had no intention of even leaving the house! We’ve come a long way.
      Of course, Herself always thought I should be putting myself ‘out there’ more, so she’d smile that her experience is actually a way me of doing that!

  4. Yes, you are someone people will listen to. Your confident presence and easy manner belie the painful times of which you spoke. Nicely done!

    nice boots! <:-D

    1. Thank you Laurel- when I first spoke about my mum’s health and death I was crying at the podium… Practice and time have helped.
      That was the first public outing for the new boots 🙂

  5. I thought I left a comment after watching the Video last night. Maybe I had a senior moment and forgot. 😦 Sounds like a very worthwhile day and I was moved by your speech. By the sound of the applause after you finished – others were too! Well done.

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