Thread by @ginni_bb

Wonderful longterm aphasiogist Professor Nina Simmons Mackie is rounding up our fabulous #BASSym2019 presenting info from her white paper on the state of aphasia. What a privilege to have our brilliant keynotes.

Nina has highlighted the brilliant work of @AphasiaAccess - definitely check them out. #BASSym2019

Key findings from the White Paper.

Frequency of aphasia - the range in the literature is pretty big! Frequency often ignores focal brain tumours and TBI. Are we underestimating the frequency of #aphasia - this affects funding priorities!

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Is there a way to collect data on #aphasia more systematically across and within countries, including various aetiologies? #BASSym2019

More impact if we focus on the impact of aphasia rather than the definition. Definitions can make people glaze over! Maybe this instead (see slide) #bassym2019

People with #aphasia are less likely to be discharged home than people without. Then residential settings can negatively impact aphasia recovery - less communication support. A vicious circle. #BASSym2019

Lower quality of life, higher healthcare costs - a ripple effect.

what can we do?

Describe impact first, then stats.
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#aphasia impacts friendships. Needs to be addressed from the get-go! Friends are lost, it’s difficult so people avoid people with aphasia, that’s so lonely. Solid friendships are associated with better quality of life and vice versa #BASSym2019

Loneliness matters! Lower wellbeing, higher rates of disability, depression, physical illness, cognitive decline and earlier death. We must address this! The equivalent of smoking up to 15 cigarettes a day! Our management of aphasia should focus on social engagement. #BASSym2019

Reframe our therapy, befriending programmes and aphasia peer groups #BASSym2019

Impact on participation (examples of participation in the slide) #BASSym2019

People with #aphasia want to do more! They want to participate but aphasia can limit this. Not enough #slpeeps are capturing participation in outcomes, intervention and assessment.
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Participation matters - better qol and health if participation is higher.
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Communication access - example from NSM in healthcare. People with aphasia are limited by the way info is given and opportunities to engage. #BASSym2019

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For people with aphasia communication was more restricted in healthcare settings. #BASSym2019

Do we need to make staff training in communication mandatory in rehab facilities and hospitals? #BASSym2019

Possible actions on communication access from NSM #BASSym2019

Lack of funding for sufficient rehab!
Lack of longterm aphasia therapy!
Serious consequences- more readmissions, higher costs, distress and more. #BASSym2019

#slpeeps usually prioritise dysphagia over #aphasia and other communication difficulties. #BASSym2019

We need more long term aphasia centres and services #bassym2019

More Actions from NSM’s white paper #BASSym2019

All these gaps present us with opportunities to be creative in helping people with #aphasia achieve what they want. #BASSym2019

@threadreaderapp unroll please