Just over two weeks to go until I close the UK wide survey of speech and language therapists (SLTs) working with primary progressive aphasia (PPA) or fronto-temporal dementia (FTD).
Do you work at the foot of Snowdonia, in the valleys of Cumbria or in the urban sprawl of London? Where ever you are if you have seen a patient with PPA or FTD your experience and your opinion as an SLT are valuable!
I have had a fantastic response rate, thank you to all those who have completed the survey so far. If you know of anyone who may not have got around to completing this survey, who is unsure if they should complete the survey, please encourage them to do so.
I want to hear from clinicians who may have only seen one person with PPA as much as I want to hear from those who see people with PPA on a regular basis. I want to hear from less experienced and more confident clinicians. I want to hear from clinicians who work in different services- inpatient, outpatient, and community.
To complete the survey click on this link:
BUT WHY? I hear you cry!
Anecdotally I hear many similar issues from clinicians and services across the country trying to deliver services to people with PPA. I am endeavouring to collate and document these data, using this survey, to answer some of the bigger questions:
- Are there differences in the number and types of people referred to SLT who have PPA?
- What are the barriers for people with PPA to accessing speech and language therapy services across the UK?
- What are the differences in service capacity available for people with PPA across the UK?
- What assessment and therapy tools do SLTs actually use with people with PPA?
- What are the common components that may be useful to include in future communication therapy programs for people with PPA?
I will be planning to share the results through verbal and written means, so watch this space! In the first instance I am presenting the initial findings at the St Andrews Northampton conference on the 20th April “Making Mental Matter: Innovative speech and language therapy in practice”. The UK’s first speech and language therapy in mental health conference. Sign up at:
Tweeting, blogging, podcasts…these may all seem rather novel and perhaps quite intimidating for clinicians and researchers. And to be honest I was not convinced by these new age phenomena a few years ago. My husband (before he was my husband) used to download lots of podcasts, predominantly about football. My friends who work in media have been on twitter and Instagram since the beginning of time. If I am honest I felt that as a serious health care professional I would never be using these platforms for anything serious.
Yet in 2015 I found myself opening a twitter account for professional purposes, shortly followed by this blog to document my journey through my PhD. I am now even considering re-visiting my dormant Linked-In profile. It has been a bit of an epiphany for me. I really enjoy all this social media networking. Even more importantly social media has enabled me to reach further than I had ever anticipated. I have been able to spread a survey I designed across the UK. I have been overwhelmed by the responses ranging from the far reaches of Scotland, the Republic of Ireland as well as London and the South.
I have even taken to listening to a podcast recently called MDTea. The podcast targets all health professionals who work with older adults. Episode 4 is about “communication in cognitive impairment”. It is just over 30 minutes of pleasant discussion on communication approaches used in dementia to support people with cognitive and communication difficulties. It is rather nice to hear two medics being so positive and engaged about communication management. They provide some lovely examples of how person centered care, memory books and validation approaches as well as a number of other approaches support communication on the wards or in nursing homes. It would be interesting to hear a little more on speech and language therapy – but I am sure that is yet to come. It is really rather enjoyable to engage in this type of bite-size interdisciplinary information sharing and if anyone would like to have a listen you can access the MDTea podcasts here: http://thehearingaidpodcasts.org.uk/mdtea-2/
Having said all that I don’t really know why I am so surprised by all this. I was recently sent an article all about the use of social media in research. Schnitzler, Davies, Ross et al (2016) stated that “the use of social media micro-blogging platforms is a contemporary, fast, easy and cost effective way to augment existing ways of disseminating research which drives impact.” As a communication “expert” I do understand that communication evolves, that we inevitably choose faster more efficient methods of communicating our messages effectively. It is natural, exciting and useful too. I champion these innovative methods and advocate we all catch up and evolve, especially as communication “experts”.
Schnitzler, K., Davies, N., Ross, F., & Harris, R. (2016). Using Twitter™ to Drive Research Impact: A Discussion of Strategies, Opportunities and Challenges. International Journal of Nursing Studies.