Political opinion with Alison Bennett MP: A rare condition should not mean rare care

Last year, I was contacted by a constituent living with Primary Progressive Aphasia (PPA), a rare form of dementia that affects speech and language. They explained that the main treatment for PPA is not medication but speech and language therapy. This simple intervention can make a profound difference.

They considered themselves “lucky” because their local health centre provided the therapy they needed to communicate, maintain relationships, and manage their condition. But they also told me that in many parts of the country, this support is not available. The idea that access to essential therapy could depend on a person’s postcode felt unfair to them. This does not sit right with me either.

Healthcare should not depend on how common a condition is, yet for those living with PPA, that is often the reality.

Recently, I attended an event in Parliament hosted by PPA charities and experts. It brought together clinicians, people with PPA, and families to discuss how support can be improved. One clear message emerged: because PPA is relatively rare, many Integrated Care Boards responsible for NHS services in England do not commission dedicated PPA services. This means patients may experience delays, minimal provision, or no access to therapy all because of their postcode.

I was told that support for PPA does not require large-scale increases in services. Evidence shows that even limited, targeted speech and language therapy - sometimes only a small number of sessions over several years- can make a meaningful difference in someone’s ability to communicate and their quality of life.

Experts emphasised that they are not calling for extensive new programmes. They are simply asking for consistent commissioning of speech and language therapy for PPA across all areas, and for local services (such as memory clinics) to include speech and language therapists who can support earlier diagnosis and more appropriate care.

One thing is clear: this postcode lottery must end. The quality of healthcare a person receives should never depend on where they live. People with PPA deserve consistent, fair access to the support that can help them live well for as long as possible.