I was sat in a PPI reference group with people with lived experience of language led dementias (primary progressive aphasia; PPA) and their families approximately 2 years ago (feels like a lifetime ago – back before the pandemic) when someone reminded me of an important point. They flagged that ultimately patient care is more important than research. By this they explained that though it was important to demonstrate the effectiveness of a speech and language therapy intervention, surely if enough people believed it worked, wasn’t the question more about how to make commissioners pay for the services so people could actually receive them. They challenged me to focus as much on influencing care pathways as developing and doing research.
With my clinical speech and language therapy background it had been this lack of commissioning that had driven me to research. I believe that rigorous research can influence practice guidelines and standards. I have also realised that rigorous research can build networks and connections, and consequently influence practice more laterally. And these connections are what have allowed me to put my toe back into clinical practice.
My research has focused on developing interventions for people with PPA. This has included a systematic review of the research on speech and language interventions for this group, where I picked out the key components including the number of sessions and how these were delivered. I also conducted a UK wide survey of current speech and language therapy services for people with PPA, enabling me to understand the restrictive service criteria preventing the delivery of these service, as well as the barriers in terms of knowledge and awareness of PPA and how to support people. I also worked closely with people with PPA and their family members, co-producing a new intervention, delivered by speech and language therapists to improve conversations for people with PPA and ultimately reduce the impact of their aphasia, improve wellbeing and maintain relationships.
This research provided an excellent basis to collect data on the gaps in current local speech and language therapy services, highlighting the value of a national service in mentoring the therapists thus building capacity. Additionally, delivering therapy and providing equitable access to speech and language therapy for people with PPA across the UK. Synthesising the latest research findings on interventions for people with PPA, provided a resource of knowledge and information on best practice.
A wonderful part of this journey was working with my supervisory team and people living with PPA, often through Rare Dementia Support. My mentor, Professor Jason Warren, a clinical academic working across the Dementia Research Centre and the Cognitive Disorders Clinics at the National Hospital for Neurology and Neurosurgery had highlighted that to date there had been limited speech and language therapy input to date. Professor Warren has close links with the PPA branch of Rare Dementia Support who host support group meetings and direct support to people with PPA and their families. I have become more and more involved with this group, and met Professor Seb Crutch who runs RDS. Working with Professor Warren and Professor Crutch highlighted the possibility of establishing a new clinical speech and language therapy role.
I got in touch with the speech and language therapy team and joined up the dots. I am eternally grateful for the hard work done by the clinical leads internally across speech and language therapy and the cognitive disorders clinics. As a consequence, I now work part time clinically, and have established a very small national speech and language therapy service. We have even managed to grow this service.
The service was initially funded by Rare Dementia Support, and more recently by the University College London Hospital Charity. We have collected lots of data on the service, from patients and their relatives (both their opinions and outcome data), and from our multidisciplinary colleagues and speech and language therapists in the community. We have also collated activity data and are hoping to disseminate all this in the near future, so watch this space. We hope that this data also will inform further commissioning and expansion of our service so we can meet the needs of people with progressive aphasia, not just with PPA but other rare dementias too.
Dr Anna Volkmer is a Speech and Language Therapist and researcher in Language and Cognition, Department of Psychology and Language Sciences, University College London. Anna is researching Speech and language therapy interventions in language led dementia and was once voted scariest speech and language therapist (even her children agree).