27 March 2025
A powerful parliamentary event held this week has brought much-needed attention to Primary Progressive Aphasia (PPA), a rare language led dementia that affects language and communication.
Organised in partnership with the charity Dyscover, the event took place on Tuesday 25 March in the House of Commons, drawing cross-party support from MPs and peers.
The event, sponsored by Helen Maguire MP – Dyscover’s local MP for Epsom and Ewell – gave people with PPA and their families and carers a unique platform to share their personal stories directly with parliamentarians. They highlighted the challenges they face in accessing speech and language therapy, the key intervention for the condition and often central to its diagnosis.
Opening speeches were delivered by Steve Jamieson, Chief Executive of RCSLT, and leading researchers and clinicians including Dr Anna Volkmer and Rosemary Townsend. Each speaker underscored the urgent need for equitable access to SLT services for people with PPA across the UK – a key focus of the awareness campaign.
“This event was born out of conversations with people living with PPA and their families,” said Townsend. “They told us what was needed – awareness, support, and change.”
As part of the campaign, RCSLT and Dyscover are calling on the Government to either nationally commission SLT services for PPA or issue clear guidance to Integrated Care Boards to ensure consistent local provision. A letter was sent to the Secretary of State for Health and Social Care last year outlining these concerns, but to date, there has been no commitment to change the current funding approach.
The event also served to build momentum for the first ever Primary Progressive Aphasia Awareness Day, which will take place on 4 April 2025. Campaigners hope the day will further raise public and political understanding of the condition and the importance of early diagnosis and support through SLT.
“Today is not the end,” said Volkmer. “It’s just the beginning. With continued support from Parliament, professionals, and the public, we’ll keep working towards change for those affected by PPA.”
Call to action
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