We are all in this together: introducing the collaborators

 

I have the absolute pleasure of officially introducing my committed and courageous NHS SLT collaborators to the BCPPA project. There are 8 SLTs working in the NHS to deliver the intervention I have developed to (hopefully) around 42 couples. The SLTs will be recruiting participants, consenting (and assessing capacity), completing pre-intervention measures AND potentially conducting 4 sessions of therapy with these participants.

 

Many of the collaborators have been on this journey with me from the very start. When I first considered applying for my NIHR fellowship I approached a couple of extremely experienced SLTs at the Dementia and Mental Health Clinical Excellence Network. I told them about the project and the fellowship and they enthusiastically agreed to participate. At this stage they simply signed up to my fellowship application – agreeing in principle to participate by put their names on the form. Since then I have met with these SLTs on a number of occasions to discuss the progress of the project and plan the timelines for involvement. They have stuck with the project through the trials of grant application, Ethics and R&D approval. They have reminded me of importance of why I am developing research for people with PPA. They have made me feel that I was able to promote the profession as a clinical researcher. They have stood behind me.

 

 

This week marks the end of the training sessions that I have been delivering across the 3 NHS trusts with these SLTs. It is a significant point on the project timeline. I have shared and advised the teams of SLT collaborators on how to identify potential participants (inclusion & exclusion criteria), consent these participants to participate in the project (using information sheets and consent forms I have designed), complete pre-intervention measures (quite a few including making videos argh) and conduct the therapy protocol. I spent rather a lot of time preparing for the training and if I am being honest I was worried about it. I realise now that this was not necessary. The SLT collaborators were excited to be involved. They immersed themselves in the practical tasks I assigned develop and really reminded me of how enthusiastic I feel about the project overall. It was a great tonic. I have had a chance to think about what really worked and here are a few tips and hints from the experience:

 

  • Send out just a little bit of pre-training work in an email. It encourages people to think things through and come prepared with questions (but don’t send too much as this is also overwhelming with busy caseloads)
  • Provide people with paper manuals/folders. People love to hold something in their hands!!! And have something to take away. Include flow charts and checklists that are practical and ready to go where possible. Make it simple and straight forward and accessible.
  • Bring biscuits or cake for your attendees
  • Encourage people to consider the project their own- use we (not I). They are in it with you and they own it too (this was a great tip from someone else)
  • Invite them to tell you about their research experience and what they want to get out of this training early in the session – then you can try to ensure you do this (or explain why not). Do the same- make sure you tell them what the aim of the training is (learning objectives make things transparent)
  • Invite them to ask you questions- and try to invite them to reflect and answer these questions with you. They are part of the research team, plus they will often answer their own questions meaning it feels very collaborative and they feel confident that they do know what they are doing.
  • Be practical- don’t assume that doing an assessment is simple for an experienced therapist. It may be a new assessment and when else but here will they have a chance to practice and doing an assessment for the purposes of research is always different to doing something clinically.
  • Be even more practical with technology –  don’s assume therapist know how to use technology. And don’t assume they do. Go through the motions of using it in real time (e.g. I asked the SLTs to make a whole 10 minute video of themselves having a conversation) to iron out concerns and problems.
  • Create opportunities to discuss tricky issues such as consent and capacity. It is always something that worries people. Go through case studies- invite case discussions. Provide flow charts and contact details.
  • Create opportunities to discuss the differences between research and clinical work- the more they think about this the more they may see the difference. they may feel frustrated by some of the limitations of research but you need to find a way of reassuring and supporting people in this case.
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Woah, we’re half way there…..

I am in the first week of my third year of my PhD. This means I have completed half of my PhD and have half left to go. There are 3 other PhD students in my office in exactly the same boat. We have jointly agreed that our current anthem to support this period in our lives is:
Woah, we’re half way there
Woah, livin’ on a prayer
Take my hand, we’ll make it I swear
Woah, livin’ on a prayer…
Yes, Bon Jovi. I dare you to not hum this song all day, or at least for part of the day.
On a serious note. I really am half way through my PhD. I had to check recently, my supervisor asked me to double check too,  I feel like I have only just started my second year how can I possibly be in the third year. I feel slightly scared- only two years left to collect ALL my actual data (the last 2 years have been leading up to the start of my pilot study which I have only just started really ahhhhhh).
So in a panic I tried to find my Gantt chart. That good old Gantt chart that I created when I submitted my funding application to the NIHR, that I updated recently at my upgrade viva. Those 3 pages of Gantt chart seemed like a huge volume of things to do. The huge amount of training- tick. The overseas observations- tick. The PPI- tick. The first conference- tick. The first (tick), second (tick) stages (full of lots and lots of individual jobs) of developing my complex intervention to lead into the third stage (the pilot – which is where I am at now). The ‘starting on my thesis’- maybe not so ticky as the rest. The starting to work on publications – again ‘ticky’. But yes, it is on track, it’s coming along. Woah.
Now there have been so many people holding my hand, helping me learn what to do. My awesome supervisors- well I must say I am rather clutching onto my primary supervisors hand (still). I am clutching on so she can’t let go. I sound desperate as i write that. But really she is amazing. I can’t count the huge amount I have learnt from her, and the energy she has given me. And I feel just terrible that I can’t seem to absorb any proper grammatical rules or spelling (I was born in the 80s- well that is my excuse) but I know she’ll be there for the big and the small. My mentors and their unwavering enthusiasm keeps my head above water at all times. They are the ones who think of thinks outside of the box I have got myself into, they are much more objective and it is amazingly useful. My supergroup of PhD pals are another amazing source of support. They tolerate my blank looks when discussing statistics and try to help me when I forget how to print a page or format a document (they sigh and pat me on the head- poor woman to have been born back in the 80s).
But perhaps I am also feeling rather pleased. I have survived the first half of my PhD. I feel quite at home in my role. I went to a seminar in our department yesterday and I looked around the room and I thought two things: 1) I know lost of people in this room and they are all pretty cool, 2) I could stay here for a bit longer. Perhaps I would like to have a research career beyond my PhD. Perhaps I should start thinking about that and planning that. Perhaps I should look at the NIHR fellowship pathways again and just have a peek at what I might have to do next. Perhaps I should speak to my supervisor about how i continue along this path. Perhaps I could work a little bit clinically (because I actually do love doing speech and language therapy with people with PPA) and perhaps I could work a little bit academically (more research I must be losing it). Clinical researcher. It has rather a nice ring to it though.

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!

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.

The saga continued: Did I tell you about my ethics amendment?

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:

  1. Before you do anything else contact the Research Ethics Committee (REC) who approved your project and ask them what to do! I wish I had done this first- they had the most accurate information!!
  2. The HRA website is also helpful BUT also confusing
  3. Don’t ring up the IRAS people – they only really advise on the website and form features etc
  4. Only complete the ethics amendment form. Unless your told otherwise DO NOT I repeat DO NOT edit your existing IRAS form. Simply refer to or list the sections that your amendment applies to in the ethics amendment form.
  5. Check your local sponsor processes too- will they want to see a draft or just the final version? Mine only needed to see the final version to sign it off.
  6. NB: the IRAS amendment form asks for a date and a title- use the full date (including day, month and year and a title that states if this is amendment 1,2,3 etc).
  7. Once you submit the IRAS amendment form on the system this doesn’t necessarily mean it’s submitted – I had to save mine as a PDF and email it to my REC who then acknowledged its arrival.
  8. Be prepared for the REC to ask questions that need a quick response (all via email). I was on leave when mine came and I got a bit of a surprise.
  9. Be positive!!! It will be fine.

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….

Riding the PhD waves

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!

Let’s get digital…digital…(oh and please vote for my blog!!)

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:

https://www.nihr.ac.uk/news-and-events/support-our-campaigns/shortlisted-entries.htm

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….”)