Over the course of my clinical career I have learnt an incredible amount from my patients and their families. I can’t put it all into words but I feel I have learnt about life, about how to cope with life’s challenges and about how to be grateful for life. The skills I have learnt from my patients has got me through my own tricky times. I have also realised that these people carry an immense amount of wisdom and experience about their conditions. And this is sometimes more valuable than much of the medical expertise the health professionals have. Indeed when working in rehabilitation the most effective work was that which was guided by the patients. They often knew what would work best for them better than we did. We were simply the facilitators – delivering the relevant therapy when needed.
The same goes for research. People with PPA and their families have given me the motivation and enthusiasm for this work. They have also given me ideas and direction. I could not do my work without the time and generosity of ideas that people with PPA and their families have given me. Their perspective is so valuable. It makes everything much more relevant. And I am almost surprised by how easy and natural working with my steering group has now become. My steering group are members of my project team. We work together to identify new ideas and modify old ones (or co-produce stuff- co-produce being the most on trend word for this area at the moment and i am totally on trend right!!??).
In order to work together with my steering group we have developed some routines and strategies that work for us. I do, however, have to mindful that I keep reviewing these. People with PPA have a progressive condition. What works now may not work next year. Unfortunately that has also meant not everyone has been able to continue as members of our group. We have consequently had to recruit some new members to make sure we had fair representation. In doing so we have, as group, adapted to their needs too.
Adaptations need to accommodate both more practical and more communication based issues. And I just wanted to ‘show off’ a couple of the techniques that have really worked well. This has included having one member attend via a teleconference link; she is working and can’t always come along to meetings in person. This was actually quite exciting and another member of our group tweeted about it. See how on trend we are with all our tweeting etc!
I also regularly communicate with people before and after meetings, providing them with an agenda and minutes. In the past this has included telephone calls and emails to gather people ideas prior to group discussions. Group discussions can be incredibly difficult to negotiate when you have a communication difficulty. More recently I have asked people to collect information prior to a meeting- and we have then spent the meeting putting this pre-prepared information together. This means less time generating a complex language based idea in a meeting.
In our last meeting we spent some time planning out the next two years of meetings. To do this we use a voting system- with post it notes. Even the members of our group who are much less verbal were equally able to engage in this task. It also means we now all know what to expect over the next two years (ahhhhhh only two years left).
Having made all the adaptation and having endeavoured to be as inclusive as possible I am also aware that in two years time when we finish we will need a big fanfare and farewell for the steering group. In fact what we didn’t document on our white board is that we all agreed we will need an enormous goodbye party!
Whilst working in the NHS I was bogged down by admin. It often felt that for every therapy session with a patient that there was at least a bucket load of admin to do. And by a bucket load I mean around 45 minutes minimum depending on the day and the task. A set of notes, a report, a phone call, scoring tests, registering someone on a computer system or ticking them off on the system, activity statistics and reports, signage to put up, reporting to kitchen staff…… phew even writing it down feels like a chore. Once you start multiplying this by 4 or 6 it becomes unmanageable.
I had a dream (or a delusional vision perhaps) that once I started my PhD admin would become a thing of the past. Now I realise how unrealistic that was. I wish I could go back in time and ask my past self:
“Past Anna, seriously when in life do we not have admin?”
I have admin: for my kids (two sets as I have two kids), my house, my bills, my parents, my husband, myself. Doctors appointments, dentist appointments, electricians to chase, birthday presents to buy, school trips to pay for (online as it’s all fancy like that now). So obviously PhD and research would include admin.
Whilst working in the NHS I often felt purposeless. I was entering the same patient data into multiple systems for data collections and comparisons I never saw. It often didn’t feel that it made a difference. Yet I might get a black mark against my name from some higher power if I didn’t do this particular data entry. In comparison PhD related admin feels under my control- purposeful and useful. I collect information and make phone calls, I write letters and complete forms all for the purpose of furthering the research. I am the master of my own admin. I am thus much more motivated to complete the required tasks.
These are my tops tips for keeping on top of my admin:
Keep a to do list
Put EVERYTHING on your to do list from sending specific emails, submitting expenses, making phone calls to writing journal articles
Tick things off on your to do list daily (or twice daily)
Add things to your to do list daily (write a brand new one every week)
Keep your to do list with your diary- to see how these things will fit around your daily activities
Deal with your emails systematically at the start of every day. Don’t leave them till later. Do it first thing (set the time aside to do it).
Make phone calls before lunch- don’t think about the call, just make it.
Prioritise people who gate keep your study- NHS ethics, R&D, SLT collaborators.
Prioritise work that affects the start of your study- the sooner you do it, the sooner the study opens.
Check your Gannt chart and your PhD minutes actions regularly (make sure you have minutes and actions and store them safely)
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.
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.
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!
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:
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!!
The HRA website is also helpful BUT also confusing
Don’t ring up the IRAS people – they only really advise on the website and form features etc
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.
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.
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).
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.
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.
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….