Research: A squash and a squeeze…

There is a wonderful children’s book by a well known children’s author (many of you may know this one) that tells a great story about an old woman who thought her house was too small, so she approaches a wise old man for advice. He tells her to take in her hen, she is puzzled but does so. The hen causes havoc. She asks the wise old man for more advice. He advises to take in her pig. This goes on and she takes in 5 animals until her home is super full and quite chaotic. At some point her tells her to chuck them all out. In the end her house feels enormous and she is super happy. A fellow SLT researcher recently compared doing research to this children’s story. And I think I might currently have a house full of animals.

When I started out I wondered how I was going to juggle everything. 2 years in and I am about to embark on the pilot stage of my research project. In order to this I am bringing together all the work I have done to date. I have refined the intervention I have developed. I am in the final wrangles with the R&D departments, I am doing the last bit of work collecting video examples to support the training (after I just 4/5 weeks ago got my ethics amendment approved to do this), I am photocopying, stapling, hole Punching the vast training packs and am about to deliver the training to SLTs across 3 NHS sites,  I am also training the SLT project students who will be helping me, I am setting up IPads for them to use, my son just started school, my sister just got married, we are decorating two spare bedrooms at home and I am just about getting all the washing done and feeding both the kids when their hungry (I think).

I am currently in a squeeze. But although it is rather chaotic it is important. The training will be an opportunity to ensure the next two years are not such a squeeze (there may be a couple of moments in there yet buuuttttt hopefully I am due some respite). The training of the SLT collaborators who will deliver the pilot study intervention on the ground will ensure:

  • Correct identification of eligible participants
  • Appropriate consenting of said participants
  • De-identified participant data
  • (Accurately) Completed pre-intervention measures
  • Delivery of an intervention that adheres to the intervention protocol (and fidelity monitoring to ensure everyone is doing this the same way)
  • (Accurately) completed post-intervention measures
  • Safe and sound collection of data
  • Happy local collaborators who feel well supported

In theory once this training is done my house won’t be such a squash and a squeeze for a little while. Allowing me time to go back and get on and write my thesis chapters. Until the next time I invite them all in again for another go!

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How can we make PPA more telegenic?

https://pixabay.com/en/photos/television/

 

 A family member of a person with PPA recently commented that PPA is just not telegenic enough. After I had worked out what telegenic meant I decided that he was completely and utterly correct. PPA is a dementia- dementia is generally considered to be something that happens to ‘old people’. So for starters it really isn’t sexy. In fact it’s scary- so scary it’s now considered the most feared diagnosis by most middle aged adults. Dementia is being portrayed on TV more often. There was Dot Cotton in East Enders – but that was dramatic. There have been a few episodes of casualty that considered the dementia issue. There have been documentaries such as that made by David Baddiel about his Dad. David Baddiel’s father has a frontotemporal dementia- closer to PPA. But he can speak, and communicate and his symptoms are conveyed well in the medium of television. 

 

Communication difficulties are silent- hidden. They are rarely shown on TV. There was a recent documentary made about a school that did manage to show the effect that stammering had on a teenage boys life- and the amazing impact of a simple strategy. It went viral. People felt incredibly empathic toward him and celebrated his success with him. 

 

This is the kind of “advertising” that can spread the word. I know there are short falls to this approach – like when people start storming into their GP surgery asking for the “cure” to Parkinson’s disease that they read about in the daily paper. But on the other hand perhaps this broad brush stroke is still helpful. Perhaps by advertising the broad ideas – then people can refine their knowledge afterwards.

 

People with PPA have told me it is all of our responsibilities to promote PPA where we are able. Not just SLTs but people with PPA themselves, families, charities and SLTs. If we have a chance – tell people about it. 

I didn’t win the NIHR blog competition but my blog was shortlisted. And all shortlisted entries will continue to be promoted via all the NIHR channels. What a brilliant opportunity- NIHR reaches people I had never hoped to reach. I am already overwhelmed by the impact on my following- it’s wonderful. And of course it means more people are hearing about SLT, PPA and conversation therapy! Right round one – done. Next time I see a chance, I’ll take it! I challenge myself to find new chances to spread the word, and to take these chances to spread the word. I challenge you all to take a chance when you see it and where you see it. Make PPA telegenic. Get it into the media and let people know.