Campaign to improve care for people living with Primary Progressive Aphasia (PPA) launched

The campaign, led by the Royal College of Speech and Language Therapists (RCSLT) and the specialist charity Dyscover, calls on the Government to include Primary Progressive Aphasia (PPA) in its list of conditions requiring nationally commissioned services through NHS England.

RCSLT and Dyscover have written to the Secretary of State for Health and Social Care, Wes Streeting, urging swift action to ensure people with PPA can access the care they deserve, regardless of where they live in the UK. The letter has also been sent to the Chief Executive of NHS England.

PPA is recognised as a rare form of dementia by NHS England, but services for individuals living with this condition are not commissioned at a national level. This has created significant barriers for those affected, limiting access to the specialised speech and language therapy that is crucial for diagnosis and ongoing support.

Without nationally commissioned services, the consequences for those with PPA are serious:

• Misdiagnosis: A lack of specialist support means many people are misdiagnosed or diagnosed too late, leading to delays in accessing the limited treatment options available.
• Lack of Support: Families and individuals face complex communication challenges, leading to emotional strain, isolation, and difficulties in accessing the correct care.
• Shortage of Expertise: Many community-based speech and language therapists lack the specialist training to deal with rare conditions like PPA, leaving patients without the expertise they need.

The benefits of having nationally commissioned speech and language therapy services are also clear, leading to:

• more timely and accurate diagnosis.
• better and more equitable support for people with PPA and their families to enable them to maintain their quality of life and live better for longer
• community services having access to the specialist speech and language therapy experience and expertise they require.

The RCSLT is grateful to Philip Robinson, whose wife, Charman, has PPA, for supporting us with this work. Philip highlights the impact speech and language therapy has for Charman and for him: 

 “Speech and language therapy has been a lifeline for us as we live with my wife’s Primary Progressive Aphasia.  It helps us preserve the ability to communicate, keeping our connection strong and maximising quality of life. It helps us stay close and continue to share meaningful moments together.”

How You Can Get Involved

We’re encouraging people to write to your local MP to ask them to urge the government to prioritise specialised commissioning of Primary Progressive Aphasia services.

Together, we can ensure that the voices of people with PPA and their families are heard and that the government delivers better, fairer care for all.

For more information and to get involved in the campaign and for future updates, visit our campaigns page