Dee is a proud mum to Emma who is a 6 year old stroke survivor. Emma had a stroke in utero that was diagnosed when she was 11 months old. Through the diagnosis process as well as Emma’s rehabilitation and recovery, Dee identified significant inequities in the healthcare system for babies and children who had strokes. She cofounded Little Stroke Warriors to bring the paediatric stroke community together to support each other and advocate for change, so that all children get access to timely treatment of stroke as well as improved pathways to care and reliable information to navigate their journey ahead. Dee also recognises that while improved stroke diagnosis and treatment is vital, so too is improving accessibility and inclusion of children with disabilities so that every paediatric survivor can live in a world free from ableism and discrimination. Working in healthcare and family violence prevention, Dee is also an advocate for amplifying the voices of children who experience family violence and improving early intervention response in healthcare to reduce harm.

Presenter Of 1 Presentation

PWLE Reflections on Impact: Stroke Foundation Australia

Session Type
SSO Session
Date
28.10.2021, Thursday
Session Time
10:00 - 11:30
Room
SSO SESSIONS
Lecture Time
10:51 - 11:08

Abstract

Abstract Body

Stroke Foundation Australia involved PWLE at all levels of the organisation.

EnableMe is a stroke recovery website, bringing together information, tools and connection. Stroke Foundation engaged a diverse group of people with lived experience (PWLE) of stroke, health professionals and researchers to develop EnableMe using a codesign model. EnableMe is successful with 9,000 registered users. In 2020, 105,413 people visited EnableMe, accessing 367,400 pages of information, podcasts were played 16,109 times. 88% of PWLE reported they found EnableMe useful, and 84% would recommend it to others.

“You can relate to other people’s stories and you’re not all alone with your thoughts. People are always willing to share what they’re learnt. EnableMe is like my stroke family. It’s always there for me.” Sue Bowden, survivor of stroke

Researchers seeking Stroke Foundation support must demonstrate how they have involved PWLE in project design, team membership and thier engagment plan for the research. 100% of funded research grants involve PWLE.

Stroke Foundation “Living Clinical Guidelines” involves 35 PWLE contributing to the Content Development Group. For each topic 2-5 clinical experts are joined by 2-3 PWLE to review draft changes to recommendations with a multidisciplinary steering group (also includes two PWLE) finally approving changes. A part of the guidelines a co-design project was undertaken with members of the PWLE panel. Over a six-week period the group adapted the clinical guideline recommendation on cholesterol lowering targets which is available online. Evaluation of the living guidelines project found those involved in the development process appreciated the inclusion of consumers.

Hide