by Sue Bowden

It was a thrill to be asked to talk at the Bridging the Continuum Conference. When the organisers invited me to do a presentation, I scribbled notes in my diary.

Bridging the Continuum, Global Conference, 20 minutes, lots of people, consumer, present Friday. Ask someone else about accommodation? Some rules about not being able to be near exhibitors? 

Before finishing the phone call, I had a name for my presentation, I had a vision. But as you can see by my notes, I was left with uncertainty. Still, I had been invited to make a presentation and I set to work, completing my first draft within a week. I brought together what I felt were important parts of my life for a talk which sounded like it was going to have a lot of reach.

My presentation Moon, River, Turkey sat like a piece of treasure on my laptop while I continued with day-to-day living.

Emails trickled in from the organisers of this conference as I sent through the name of my presentation and tried to confirm exactly how much I was invited to be involved, as I became familiar with my label – a consumer. There were a few hiccups like: what was paid for, regulations related to pharmaceutical companies and the public, and what events I could attend.

The first two presentations – setting the scene for the conference – were by two people who have clearly contributed a lot of work to research. The gathering of metadata to give us indications on patterns over time sounds like an enormous task. Bringing it back to the present, I felt worried about the person who had a stroke 9 minutes ago, and how this affected them. Finding out that stroke is now sitting where it should be with the World Health Organisation, classified as a disease of the Central Nervous System was information which sounded like a good outcome.

The next presentation left me feeling bewildered again as all I could hear was judgements being made about people’s lifestyles. The opening of this conference had made me nervous about the messages to health professionals and researchers attending the conference. Would they leave this conference with passion and enthusiasm about moving forward with stroke treatment, recovery and care? I wondered what happened to a person-centered approach to recovering and healing.

Throughout the next few days I became more comfortable with the language of statistics and reporting tools. Though I still felt the need to get up and walk out of certain presentations due to my own responses.

Having lived regionally in Victoria and in NSW throughout my life I was very interested in all things Telehealth, like David Lawson’s memory retraining program. By Thursday I was feeling very comfortable having met lots of people, and reconnecting with some familiar faces. A very frank look at rehabilitation in stroke by Prof Avril Drummond was uplifting and promising. Leaving me feeling optimistic about the future.

By Thursday night, as I joined lots of enthusiastic people on the dance floor, I was extremely happy jiving the night away, all the hesitations about not being included were gone as I enjoyed company and good times with everyone.

Friday brought some more interesting discussion on how we Aussies approach things in the medical world. I liked this approach! And felt now it was time for this Aussie to take myself off to a quiet spot to do some deep breathing and colouring-in before my presentation. And then it was time.

Delivering my story with respect and integrity was my purpose. I took deep breaths through some wobbly moments and I focused on sharing important messages to people of influence in the stroke world.

[ed: Sue’s presentation made an impression on the stroke world!. The massive auditorium was silent. We livestreamed it from the CRE Facebook account and it’s already been viewed 1500 times. See also A/Prof Coralie English’s take on Sue’s presentation here].

The rest of the afternoon’s presentations passed in a bit of a blur for me however my ears did prick up as I thought about the impact professional nursing practices can have during a talk about education of stroke nurses.

I realise that the conference organisers didn’t think about how I’d be approaching the conference from a very different position than the stroke clinician and researcher delegates. I hadn’t been to a conference like this before. Since the day I had my stroke I’ve experienced imbalances in power and felt vulnerable. The health professionals have all the information about what’s happened to you and you have to trust them and wait until they’re ready to part with it. I will pass on my comments to the organisers so that others have a better experience in the future!

All in all, I had a wonderful time at the Stroke 2018 Conference. Thank you to those of you who supported me along the way and I look forward to seeing what happens next in the future of stroke.

With love,

Sue Bowden

Avril Drummond tweet Sue Bowden

Avril Drummond’s tweet about Sue Bowden’s presentation