Woah, livin’ on a prayer
Take my hand, we’ll make it I swear
Woah, livin’ on a prayer…
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:
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!
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.
I have previously told you the tale of applying for NHS HRA ethical approval. I described the pain, the suffering and the long over due relief when I finally received approval back earlier this year. Well at the time my supervisors and I agreed that we had been so thorough that we wouldn’t need to go back to do an amendment- who would do that? People who hadn’t planned far enough in advance, people who were not thorough enough, people who enjoy torturing themselves, who have more time and patience than sense. Welll….soon after receiving ethical approval I realised I was one of the people I had sneered at. I realised that I needed to do an amendment to my ethics.
Once I realised (intellectually and emotionally) that I (really) needed to do an amendment I put my head down and attempted to get going. I figured that having submitted a successful ethical application in the first place please surely the amendment couldn’t be too tricky. Well let me be blunt- it was tricky. The biggest difficulty I had was finding out exactly how to do the amendment. I seemed to find a fair bit of conflicting information. And in the end I did more work than entirely necessary (from what I can tell). I did complete an IRAS amendment form and a revised protocol. The IRAS form did need to be signed off by my supervisor AND the ‘sponsor’ in UCL (the joint research office here at UCL). But I also did a few things I didn’t need to and in the wrong order. Here are a few tips and hints in case anyone out there does need to submit an amendment:
I received approval of my amendment last week and am on my way again! Phew. Chin up and keep going. I can do this PhD thing!!! I think….maybe….
As a clinical SLT working on a hospital ward deadlines were set and we worked to the deadline. I say that but I worked in a mental health brain injury ward and our deadlines often provided us with a bit more time than the general medical wards or even community services I have previously worked in, where patients really didn’t stay very long at all and it was ridiculously difficult to get everything done. Still in all the places I have worked I have endeavoured to see as many patients as possible in a day, complete assessments and reports and get them out when needed. If I didn’t see a patient they would lose the opportunity for therapy and if I felt they would benefit from it, well then I would do my darndest to provide it. There was lots of rushing around, nagging to get reports done and at times a fair amount of stress. Keeping to these deadlines was good clinical practice, overstepping a deadline is generally considered poor clinical practice. It is not within an SLTs (or almost any health and social care professionals) genetic make up to provide poor clinical practice if at all humanly possible.
In comparison (and perhaps in contrast to what you may think) The majority of my PhD has been far less manic. Deadlines have been set- I have a gannt chart detailing the timing of my every move over the four years of my PhD. It feels extremely organised. I have hit most of my deadlines but really if I haven’t, I have been able to ‘make it up’ in other places i.e. I have worked on some tasks earlier than needed and made up time on others later.
Until now I haven’t really felt time bearing down on me. Perhaps this has been an illusion and the honeymoon period is over (2 years into my PhD and that would a be pretty awesome honeymoon!). However I don’t think this is the case- I am still really enjoying it. This just feels like a welcome swell- the PhD ocean is simply stirring up a little. And it’s because I am traveling toward a transition. I am about to start my pilot study. September 2017 is the start of my NHS pilot feasibility study. And I am feverishly preparing myself for this.
Numerous aspects of the work I have been doing over the last 2 years have been leading up to and feeding into this stage of the project. I am drawing each of these pieces of work together to inform and perform for the pilot study. I am juggling the final analysis of the initial stages of my PhD to prepare the training for the pilot project. This feels like an important time. Like a crescendo. Like a peak. It’s actually fairly exhilarating!
I was casually checking my work email account last week- deleting the clutter that even seems to manage to penetrate my uni email account when….I received an exciting email.
A few weeks prior I was encouraged by my supervisor to submit my blog in the NIHR “Let’s get digital” competition. Although My rational self thought I- the small insignificant slightly tech-phobic speech and language therapist from the tiniest discipline in the world – don’t stand a chance. I figured well what the heck. And lo and behold I have been shortlisted in the category of top 5 online communities! Cue overwhelming fanfare of girlie speech and language therapy squealing….(my husband and all my media friends have been rolling theirs eyes and patting me on the shoulder as though I am a 10 year old with a school merit badge!)
But….I am now on the case, endeavouring to get as many votes as possible! I understand that I am up against a bunch of junior doctors and some amazing bug bashers. But sometimes the underdog can make it. And dementia is an issue that almost everyone I meet has experienced in some way. Their mum, grandfather, neighbour or someone very close may have had it. People are generally aware that the chances of finding a “cure” in the next few years is slim. As a society we need to focus on caring for and living well with people with dementia. My research focuses on just that.
Speech and language therapists are seeing increasing numbers of people with dementia on their caseloads. Yet there is little evidence to support our clinical practice in working with these people and their families. I hope that my research can provide that- evidence that speech and language therapists can improve communication, conversation and quality of life for people with the language variant of dementia- PPA.
This blog has been a great way of sharing my experiences as a clinician moving into a research role and to spread the word on what I am doing. The response has been overwhelming- not least being shortlisted for this competition. This has already spread the word further! So do please vote for me- before the 2nd August when the competition closes:
If I win I will learn lots more about social media and online communities- and will be able to spread the word even further!
(If not for me, vote for my not so hilarious husband who as I write this is sat next to me quietly singing “let’s get digital…digital….” to the tune of Olivia Newton-John’s “let’s get physical…physical….”)
(Image from http://www.europealacarte.co.uk/blog)
So just to clarify- I do already hold dual nationality. As I was born to a German father and a British mother I hold two passports. So being both researcher and clinician should be a breeze right!? I’ve been used to dealing with identity crisis since some football World Cup final when I was still at primary school (not sure which year or who won – so can’t have been that traumatising!).
However, I do sometimes wonder if being a research clinician makes me a bit of a pain for both researchers and clinicians alike. On the one hand I am a speech and language therapist who has worked with people in the NHS for yonks so I consider all research through these tinted spectacles. I ask questions of my research colleagues such as:
What are the clinical implications?
Is it going to have a direct impact on people and the health service?
Will it improve service provision?
How is this important in the ‘real’ world?
On the other hand I am also an SLT doing research- I have gone to the ‘dark side’ and am concerning myself with research methods and technical things. I am no longer in the trenches, nor on the front lines of the NHS. I am at UCL trying to push the mission from behind, to strategise with the other researchers. This also means I ask SLTs questions such as:
Could you write that piece of work up?
Have you thought of doing some research on this?
Would you consider helping me with my research?
Would commissioners look at that as useful?
I am frequently aware of my ‘dual nationality’. And although I may be annoying I have also realised the doors that can open much more easily with this status. I already carry a title of SLT. It gives me some credence in a health research arena. I have been able to transfer many skills- learning to communicate with consultant medics, nurses, administrators and family members can be applied to professors, lecturers, administrators and participants. I am also able to explore my future dynamically. I am missing my clinical work (I currently have small children and have decided to focus on juggling studies with home and not adding clinical to the mix for now). However I am looking forward to exploring a future where I can be both researcher and clinician. How exciting to have this other avenue of my career to explore- a world of different opportunities.