The student voice: “Everyone has the right to communicate”

We are fast approaching the 70th anniversary of the Universal Declaration of Human Rights. Thus it seems timely that one of the speech and language therapy students working on BCPPA has been considering the right to communicate for people in our study. It is good to  hear from students as they describe these clinical encounters and really reminds us of the importance of communication.

So here is the blog from our next star contributor Alice Stanes describing some of her experiences @astanes

 

The man stands up to greet us as his partner welcomes us in, we sit at the table. Throughout the course of the conversation his speech appears halting and difficult, at times he closes his eyes to speak and touches his head as he searches for the words. He uses hand gestures and points at things inside and outside the house to aid our understanding. He is animated and excited about something, he starts to hum a tune softly and speaks using single words and short, conversational phrases; ‘you know? ‘you see?’.

 

This would be my very first encounter with someone with Primary Progressive Aphasia (PPA). Along with fellow student Oli, we made the journey to visit this man with PPA and his partner to conduct a series of post-intervention outcome measures as part of the BCPPA project. Each visit involves a language assessment for the individual with PPA and a series of quality of life measures in the form of questionnaires; different questionnaires are used for the individual with PPA and their respective partners or carers. These measures, albeit incredibly useful for collecting data about their lives and experiences, and in documenting the challenges faced by those living with PPA, are long and can be emotionally challenging in nature. Some of the questions aim to measure the burden that carers experience whilst living with and caring for someone with PPA. This can be a really tricky thing to talk about.

 

In conversation with the partners I have met so far it strikes me that they are incredibly resilient; they accept change, sometimes loss, but with no apparent regret for their new role as carers. For them, life as they know it has also changed but the relationship with their loved one remains intact, as does the identity of their partner. It has really reminded me that as in all cases of dementia, it is so important to remember the person behind the disease.

 

This first visit is testament to this. This man’s story wasn’t clear at first, but a second time around with repeated gesture and the help of his partner who showed us a video she has taken on his phone, suddenly it makes more sense. The tune that he is humming is the tune he played on the piano, in a small church that he and his partner came across on a recent walk in the surrounding countryside. Of course! Because he is not foremost a man with PPA, but a musician, and an incredibly talented and successful one at that. Whilst PPA has stripped him of his abilities to construct full sentences, recognise words or communicate using language in the way he once could, in his case, where words fail, music speaks. This experience was important enough for him to share, whilst his partner helped to create a supportive and facilitative space within which he could communicate and tell his story.

 

When people ask what brought me to speech and language therapy, my somewhat non-linear career trajectory can make it difficult to explain (at least succinctly!). However, as I progress through my training I realise that simply put my passion is for communication and for supporting those who have lost their ability to have a voice, in whatever form that takes, and in supporting those around them to become experts in listening.

 

Since starting the BCPPA project my passion for the field has only strengthened and I find myself feeling increasingly at home. Despite crippling self-doubt, a LOT of the time, these real-life clinical encounters amidst a sea of academic challenges remind me exactly why speech and language therapy is so important, because everyone has a right to communicate and to be understood.

 

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The student voice: Joining up the dots

You may have read the recent article on the protocol for the BCPPA pilot study (my last blog post) and will know that we currently have a number of student speech and language therpaists (SLTs) involved in the project. In total I am supervising four SLT student projects in the 2nd year of their Masters course. Each of these students will be writing a blog post about their experiences for my blog and taking over the @BCPPAphasia twitter handle for a short period. We want to share the voices of the next generation of SLTs and encourage the use of social media as a platform for accessing CPD and professional networking.

Our first star student contributor is Jessica Cunningham @jmayc23

Okay, so here goes.

Blogging, social media, putting myself “out there” – whatever you want to call it- is not something that comes naturally to me. And in all honesty, when our supervisor Anna, asked us to each write a small guest blog for her, my heart well and truly sank. However, in a recent project meeting, Anna also said “it’s like a conversation, think of it like explaining your ideas to your mum”. Now that is something that does come naturally to me and, since starting the MSc in speech and language sciences at UCL over a year ago, has been an almost daily occurrence. Whether I’m excited about a new placement, crying out of sheer exhaustion or calling on my first day to say “what am I doing and how did I get here, I feel like a complete fraud!”, Mum has heard it all. To sum it up, they weren’t lying when they said this course would test you and at times it’s often easy to forget why you’re doing it all. Yet having the support of my Mum to patiently listen as I think aloud my worries and ideas has, by and large, kept me on track and focused on the end goal. However, since joining Anna and Suzanne on the BCPPA project, I’m not only helped to remember why I’m here and where I want to go, but also how I actually got here in the first place.

Before I applied for the MSc, before I had even heard of speech and language therapy (embarrassingly not that long ago), I started working as a carer for a man with primary progressive aphasia (PPA) called Peter. He had almost no verbal communication at all and over the first few months of working with him I had seen the many ways that often perfectly well-meaning people had really struggled to cope with his obvious communication difficulties. Instead of talking to him they talked over him to the nearest relative or carer. When I was invited by Peter and his wife to attend a course for people with PPA run by speech and language therapists (SLTs)at a local charity called Dyscover, I was immediately struck by how differently the SLTs there were able to both effectively and respectfully communicate with Peter. To say I was simply impressed would be a massive understatement, and even today, I am still trying to emulate the same compassion and skill that I saw in my first encounter with SLTs.

The therapists at Dyscover were offering a very similar type of conversation therapy to the BCPPA program, but in a group setting. Having had such a positive initial experience of this form of therapy and seeing first-hand the difference it can make to peoples’ most important relationships; I was thrilled to hear that BCPPA was one of the projects we could choose to work on as part of our MSc dissertation. In some ways, starting this project (and this course) feels almost serendipitous, after arriving at speech and language therapy in a rather roundabout way and coming from multiple and seemingly unrelated backgrounds. Yet, I also think, that in being able to keep talking openly about my ideas and reflecting on my interests, albeit often only to my Mum, has helped me to get to where I am today. Even in times of acute self-doubt (and there have been many!), I have found that these daily outpourings have given me the impetus to keep exploring what interests me most and “join up the dots” as my Mum calls it.

The Better Conversations with PPA randomised controlled pilot study protocol article: A blog summary

We have developed a communication partner training program for people with Primary Progressive Aphasia (PPA) and their conversation partners called Better Conversations with PPA (BCPPA).

 

This article describes a randomised controlled pilot study (that is currently underway) comparing BCPPA to no treatment.

 

This is the first randomised controlled UK pilot study of a communication partner training intervention for people with PPA and their families.

 

The BCPPA program and training materials will ultimately be made available to speech and language therapists (SLTs) via UCL’s public e-learning platform, alongside Better Conversations with Aphasia (BCA) at https://extend.ucl.ac.uk/.

 

Conversation training interventions (also known as communication partner training) have been widely used by SLTs working with people with PPA across the UK. At present there is little evidence to support their effectiveness, highlighting a gap in the research literature. BCPPA has been developed to meet the needs of people with PPA and their families using data collected from a UK wide survey of SLTs working with people with PPA, a systematic review of the research literature on functional communication focused interventions for people with PPA, advice from expert SLTs who participated in a Nominal Group Consensus exercise to prioritise the content of the program and from focus groups held with people with PPA and their families. This article describes the protocol for a randomised controlled pilot study that is currently underway comparing BCPPA to no treatment. The study aims to recruit 42 couples to participate in the study over 18 months, across 7 NHS sites in England. Participants who meet the inclusion criteria will be recruited by local speech and language therapist from their current caseloads. These SLTs have been trained to complete the pre-intervention measures and deliver the BCPPA intervention. If the potential participants consent they will participate in a series of outcome measures including making video recordings of themselves having conversations and a series of questionnaires on quality of life and the impact of the communication difficulties (both the person with PPA and their partners participate in these), additionally the person with PPA completes a language assessment with their SLT. Once this has been completed the participants are randomly allocated to receive either the 4-week BCPPA treatment (4 one-hour therapy sessions, delivered once per week), or no treatment for the same period. After this junior researchers (blinded to what condition the participants have been randomised to) will be seeing the participants to complete the same battery of measures. This should take a total of seven weeks. The local SLTs delivering the intervention have been asked to video and audio record themselves delivering all the intervention, so that the fidelity of intervention delivery can be evaluated. The local SLTs will also complete an adherence questionnaire, and the participants will be asked to complete an anonymous feedback questionnaire after every BCPPA therapy session. All the data will be collected and analysed to provide information about the most appropriate outcome measures, acceptability of randomisation, recruitment and retention of participants, fidelity of treatment delivery, sample size requirements and inclusion criteria for a future full trial.

 

Watch this space for our publications on the results of the study! We will be publishing them in peer reviewed journals, but will be sharing them with groups such as the PPA support group (branch of the Rare Dementias Support Group based at UCL; http://www.raredementiasupport.org/) as soon as we can!

 

 

And here is the link to the full article:

 

Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study. Pilot and Feasibility Studies, 4(1), 158.

 

https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-018-0349-6

 

 

 

A social media approach to research dissemination: the stumble.

I recently received the loveliest email from a speech and language therapist who was asking for advice on applying for PhD funding. One of the things she mentioned was how much she liked my approach to dissemination – the use of twitter, blogging and podcasting. I am so pleased that I appear to be presenting a logical, well planned approach! But in the spirit of a recent podcast I participated in on the topic of imposter syndrome I am going to admit that it really isn’t. I opened a twitter account for all things “work related” just before I started my PhD. I wasn’t convinced. My oldest friends who all work in media and the arts thought it was highly entertaining that I was embarking on this lifestyle choice. They consider me something of a tech-heathen. I am one of those annoying friends who doesn’t reply to texts, emails or Facebook messages for days, by which time the event has passed or the conversation irrelevant. I tend to lurk on Facebook and never post anything, scrolling through other people’s posts as a distraction from some tense TV program. So, I didn’t anticipate taking a liking to twitter. But I have to say I have found it rather more interesting than Facebook. I realised I could have conversations on speech and language therapy (one of my favourite topics) with like-minded souls from across the planet, I found interesting articles and it all fired my enthusiasm. I now find twitter provides me with community, a community that encourages me and excites me and drives me to share my work. I have to advocate twitter to the non-believers now. Just come and take a look, lurk and look and then make a decision.

 

I then went to a rather useful talk on social media at an NIHR meeting just two months after I started my PhD. The speaker was advocating the benefits of blogging. So, I thought that perhaps blogging might give my poor husband a rest. Rather than assaulting him with my ideas and reflections on research, dementia and being a speech and language therapist I thought that blogging might be a useful method of sharing (venting) my experiences of being a clinical academic, and might even reach others, paying forward some of the hints and tips. Disseminating information on the study I am doing was of course the top agenda for taking up this route. It felt much more accessible to write regular blogs (freely available on the internet) rather than relying solely on publishing journal articles (in journals that sadly some NHS trusts may not subscribe to) that may be less accessible for clinical speech and language therapists. Blogging has opened up other avenues too. I have been invited to blog on the RCSLT website, on the Talking Mats website and on the NIHR website. I was even shortlisted in the NIHR 2017 Let’s get digital! Competition, and although I didn’t win the traffic to my site increased massively. I also like to advocate blogging- it is so nice to be able to write something down, in a conversational style and realising you are reaching people who may otherwise not be able to access this information. You don’t need to blog lots, but regularly. And there are so many free platforms about now too.

 

On my twitter travels I recently happened upon the @dem_researcher twitter handle and website led by the NIHR. I think they were asking for blogs and I asked if I could submit a blog. Somehow, I managed to convince them that I could send in regular blogs (monthly) and now I write for them too. I also spotted tweets inviting people to do podcasts for @dem_researcher. And so, I stumbled into participating in two podcasts. One on the topic of imposter syndrome (released this week), the other on the topic of my own project!!! (released a couple of weeks ago). I really enjoyed the podcasting. Since the release of the podcast on my research study I have received emails from a person with PPA and their partner in the US, and a speech and language therapist in New York, asking about the intervention I have developed. What an amazing platform.

 

If I were asked about my social media approach I would have to explain (as I have above) that it has been more about seeing an opportunity (incidentally) and having a go. There have been other things that haven’t worked out (twitter conversations that have petered out) but lots that have worked out, or may be building something even more exciting for the future (I am involved in setting up a clinical academic group for speech and language therapists- who know where that may lead).

 

So what’s next? I haven’t yet used Instagram.…(but I am open to trying at some point).

 

Podcasting success: My husband understands my research!

 

I would probably classify myself as a have a go at anything kind of person. This can have some rather awful but also rather fantastic results. So when I was lazily scrolling through twitter not that long ago and I saw that @dem_researcher were inviting people to do a podcast with them about their own research projects I signed myself up (quickly, before I could change my mind). I then had a great chat with Adam who runs the podcasts to find out how it works and realised I would need to recruit some people from the project team to do the recording with me. I started considering who would be best and most willing to ‘sacrifice’ themselves alongside me.

 

There are four student speech and language therapists working on the project at the moment; and Tiffany Cheng. These bright young things are all really tech (and social media) savvy and brilliant key members of the team. (The students are currently planning a twitter take over to rejuvenate the twitter handle and share their experiences of clinical academic student life) So some podcasting seemed right up their street and thus Ollie volunteered to participate.

In addition the day of the recording happened to fall on the day of our BCPPA steering group meeting (who meet three-four times annually to provide advice on the project and its progress). The BCPPA steering group comprises three couples where one person has PPA, and three professionals including , an extremely experienced brilliant SLT who is experienced in spreading the good word about our profession through her work with Dyscover- Rosemary has experience of being interviewed on the radio. And thus our team was set.

 

Now, we did have an idea of the questions and were able to make some plans in advance, but as I am of the verbose breed, it was great to have a wonderful host to keep us on track and to time (NB: it is generally understood that there are two types of SLTs a)verbose and over friendly b)shy and quiet but excellent at listening). We were able to briefly discuss who would say what, but equally podcasting is supposed to be somewhat informal too (the pressure was mounting). Recording the podcast was a little nerve racking initially, we were in a fancy room, with fancy equipment and it was a swelteringly hot day! But once we started it seem to flow. In fact by the end we were quite enjoying it.

Now listening back to the podcast 2 months after we recorded it I was expecting the worst. Did we even make sense? I do hate the sound of my voice. I can be rather overbearing and dominating at times (sorry for talking over you Ollie!). I listened to the podcast with my husband who was quick to tell me that I sounded different to “real life” (much posher apparently!?). Having gotten over the initial barrier of hearing my loud and piercing voice (yes someone once told me that is how I sounded to them) I realised that I did actually make some sense. And the best bit- at the end of the podcast my husband announced that he had learnt more about my research is this 30 minute recording than in any other discussion we had ever had.

 

Since Monday when it went ‘live’ I have had a few tweets and a number of emails about the project from people who had listened to my podcast. Often from people who I have not heard from before, from as far afield as Australia and the US. What a wonderful and different way of spreading the word about the work we are doing to support with PPA and their families to have better conversations. You can listen to our podcast via the link below. And get in touch- let me know what you think, I would love to hear from people.

 

 

Big News: Blogging about my first journal article from my PhD

UK wide survey shows that people with language led dementia often do not to get referred to SLT

Exciting news: The first journal article from my PhD work was published last week in Dementia. So I thought I would try a blog post to accompany it.

I regularly write a blog for the dementiaresearcher.nihr.ac.uk site as a guest blogger, and I wrote this for them. But I have been pondering on whether to post the same one on here and have decided that yes I will. Writing this blog about my journal article took a little longer than my usual blogging time, but was well worth it.  I just wasn’t entirely sure how and where to begin.

I have been chatting to a few people about how valuable it can be to blog about the article to coincide with its publication. I have also found some advice on how to do this from a brief internet search. The advice I have collected so far recommends writing a fairly descriptive heading summarising some of the main findings (see above) and using relevant and tweetable or hashtag type phrases in no more than 140 characters and creating a trailer paragraph or set of points to pique interest before the article begins (see starting points below). Then more or less omitting the methods (other than to say it is a survey), aiming to cut it all down to less than 1000 words (ooooo let’s see how that goes), providing only a line or two of introduction and discussion start the article with something high impact- a quote or something topical (hmm not sure I can quite get that down), move into the main findings and unpack it a little, before finishing by summarising things in a slightly different fashion that perhaps directs the reader to the next step in the research you are doing. Lastly adding the full title of the article and the link to the open access version.

So, if you would like to cut straight to the article the link is at the end, but otherwise I have tried to summarise it in the way described above. Here goes-

 

  • SLTs report a growth in the number of people with language led dementia referred to their services, yet identify ongoing barriers to accessing their services for many others.

 

  • People with language led dementia are more likely to get referred to SLT for interventions if they are from high socio-economic background and from Scotland or the south of England

 

  • SLTs and other health professionals need to build a clearer care pathway so that referrers know where to send people with language led dementia.

 

Language led dementia (or primary progressive aphasia; PPA) is associated with Alzheimer’s disease and frontotemporal dementia. People present with a gradual loss of language over time – for example word finding difficulties, difficulties sequencing sounds or sentences or difficulties understanding or in reading and writing. It seems logical that speech and language therapy could be useful for these people. This UK wide survey of speech and language therapists demonstrates that the number of people with PPA being seen by SLTs are slowly increasing with respondents reporting on average having two or three on their caseloads in the last 18 months, an increase from the previous period. Most people with PPA are being seen in outpatient or community settings across, referred by neurologists (who perhaps have some experience of the role of SLTs from their work with post stroke Aphasia) for word finding difficulties but not much else. The people with PPA being referred are generally English speaking, from higher socio-economic backgrounds and in their 60-70s and are being referred 1-2 years after diagnosis. SLTs reported that there remain many barriers to accessing SLT for this group of people; including a lack of knowledge about the role of SLT and restrictive service criteria that prevents them from being seen in rehabilitation services. Where people are being seen, they are often unaware of what their diagnosis means. Where SLT are able to offer therapy (many services are not able to offer anything) they are able to offer an average of four therapy sessions where they prioritise communication training above other intervention approaches. Yet the research evidence to date in this area of speech and language interventions for SLT is historically predominantly focused on impairment based tasks such as word relearning. This highlights the need for further research demonstrating the effectiveness of the communication training approaches. This demonstrate a gap in the clinically relevant research literature which our forthcoming work on developing and piloting a communication training intervention for people with PPA and their families entitled Better Conversations with PPA (BCPPA)- the protocol is due for publication in the very near future (Volkmer, Warren, Spector, Beeke, In press, Pilot and Feasibility Studies)

 

So, my current article is entitled:

 

“Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK” and can be found here: http://journals.sagepub.com/doi/abs/10.1177/1471301218797240?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed

 

 

 

 

 

 

Building a job/grant application

I have often found myself applying for jobs with an apology as my opening line. I seem to start by highlighting the areas where I am not sure if I really fit the criteria. Where I have the least experience. I assume they want to know how much of a burden I might be. By the time I have gotten around to the good stuff I have also emphasised that I would do my best and try really hard, even though I am not sure I have done half of this stuff before. Over the years I have realised that although this might be how I feel inside (the honest truth) this is not what an employer wishes to hear. I have been an employer and conducted interviews. When I think about those interviews I can recall the way my heart sank each time an individual started answering me in this way. I didn’t want to consider the time I would need to spend working on getting them up to speed- I wanted to hear that they could be an asset to the team.

Having said that I know I am not the only SLT who presents themselves in this way at interviews. I have been asked to look at job applications and practice interview questions with a few friends. Recently I was describing to one of these friends that perhaps she should consider the whole process a little differently- I asked her if she were to employ a builder who she would consider:

1) The builder who told her he wasn’t sure if he could build it,  might need to get some outside assistance but will try his best

OR

2) The builder who says it’ll be no problem and he’ll get it done

OR (beware)

3) The builder who knows best- who tells you your ideas are all wrong and he has a better idea.

My friend thought this was ever so useful. Consequently she sat down and completely re-wrote her covering letter. She stated that she had never really thought of it all this way- she hadn’t considered her employment as an investment. Yet although promoting oneself as the right fit for the job, with confidence, is valuable, it is also important to listen, take feedback and advice to ensure you can be the best fit.

I have been endeavouring to fit this analogy to my research self. And at the recent RCSLT Research Champions day I attended the grant funding workshop (as of course I do need to think about my future beyond my PhD now argh). At this workshop I found myself pleasantly surprised by the approach being described for grant writing, it really isn’t so different. It is called The 10 key sentences. The idea is that these sentences should start with an introduction that explains what the research will achieve, why it is important and how your going to do this in 10 sentences, without using references. Once this key paragraph is written you can then break it down and address each area in turn, with the relevant evidence. I interpreted this idea as demonstrating what your selling, why and how. By presenting the solution first, rather than the problem you are a little more like builder no. 2. You are demonstrating your value as an investment. By presenting the why (the problem) first, which is what I am tempted to do, your a little more like builder no. 1. But if you are too concrete and don’t accept help, advice and ideas your more like builder no. 3.

Having said all that I will need to apply this. Execution is the harder step. Especially with that voice inside your head telling you to tell the complete truth about your weaknesses not your strengths! Nevermind- I have a bit of time until I need to think about this toooooo seriously……………………………………………….