Do you want to be a research site for BCPPA?

Warning shameless advert below:

Are you an SLT with people with Primary Progressive Aphasia (PPA) or potential PPA on your caseload?

Are you interested in conversation training for these people?

Would you like free training in the Better Conversations conversation training therapy program?

Would you like to be involved in an NIHR research project?

 

Please get in touch via twitter / email: a.volkmer.15@ucl.ac.uk

 

The Better Conversations with PPA (BCPPA) pilot study is currently underway. It is super exciting and going well. We have enrolled participants and successfully completed the study with them, we have more potential participants about to start. We have students involved in the data collection. It is all progressing.

 

The three sites I am working with have all been seeing people with PPA for some time. They have been so wonderfully supportive and enthusiastic and continue to be so now too. Unfortunately more recently the SLTs there have experienced difficulties in delivering these services (this probably isn’t a surprise for many SLTs out there reading this). Service reconfiguration and short staffing are not unusual for SLTs working in the NHS. This has meant less participants have and perhaps will be recruited at these sites than we had anticipated. For the project this means we need more sites to try to get closer to the numbers we were hoping for. In order to do this I am embarking on a drive to recruit a few new sites. And an ethics amendment too.

 

So to start I reviewed the battle plan and have written a call to arms. This has been circulated via a Clinical Excellence Network in the north of England that I have links with. I have also emailed SLTs who have recently been in contact about PPA. My third tactic is to use social media. Twitter has been wonderful to me- as has this blog.

 

I urge any SLT in England who is reading this and pondering whether they might be interested to get in touch. I am happy to explain how the project works. I would of course support therapists and I would travel to you to deliver all the training. I would provide all the equipment you would need and any assessment forms. I already have ethical approval for the project- this means that the work could start promptly (following a amendment to the ethics and liaison with local R&D to include the new sites).

 

I have had some very positive reactions and volunteers through my first two methods of recruitment. The troops are gathering force. Better Conversations will prevail. And I shall be updating this blog with my forays into my next ethics amendment. Whoopee (?)

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New Years resolutions: Don’t stress – enjoy it!

Every week I make a list of all the things I have to do that week- a to do list. Before Christmas I had a couple of things I hadn’t managed to finish and I thought I would tackle them during the holidays. What was I thinking? Did I think that my 4 year old and my 6 year old would even vaguely allow this? Or that the Christmas holidays include zero social engagement!? Seriously: of course I didn’t do those things. I spent two hours on one morning reminding myself what those things were (basically gazing at my computer screen in a bit of a daze) before I had to return to more food prep whilst simultaneously helping children with two different crafts (they couldn’t agree on the same one so one did clay whilst the other funnelled coloured sand into tiny bottles?!). And then during our various social activities people would kindly enquire if I was working over Christmas? Or if I was allowed to take leave as a student- just reminding me of those outstanding tasks! Of course, I would remind them that yes there is always work to be done. But I can take proper leave because I am also a grown up doing a PhD. And then I felt a bit guilty.

 

So, now let me explain how this works. I knew this in advance of course but here it is. Yes as a PhD student your time is yours to manage. But there is ALWAYS work to be done! This is both good and bad. And there was one occasion last year where this became a little stressful (where school holidays clashed with a significant milestone in my project). Now I work well with this model in general- I can work when I wish, I am pretty self-motivated and my studies  allow me to be somewhat flexible and pick up kids etc. I really enjoy my PhD but I also feel an obligation to be continuously working. Always on it. Always being productive.

 

This is where I recall my undergraduate student days- where anytime I sat down to watch TV in my final year I would immediately feel a pang of guilt in the depth of my stomach. What was I thinking: I can’t watch an episode of a terrible but well known TV soap when I have to revise for my finals/write an essay/prepare for placement. And then I also recall the amazing feeling in the first month of working- my weekends were my own! I had NO HOMEWORK! I could frolic through Hackney  (where I then lived) with no one to answer to except myself. Wahooooooo. Obviously that is just being 22 years old. Obviously I am not 22 years old. And I don’t wish to frolic through  Hackney any longer- I am just not hip enough.

 

As my New Years resolution I have decided to remind myself not to stress about it. I do really love doing my PhD. I feel I can affect the lives of more patients and more therapists with the work I am doing. I can make a difference. I have sat back down at my computer this morning (having been swimming first because it stimulates my brain and I manage my own time whoop) and it really is super interesting. I can’t wait to finalise my lecture for next week and continue writing the piece of work I am currently focused on. And I am basically allowed to manage my own time- be my own boss. So maybe I should just remind myself to give myself some slack. To enjoy it. It is AWESOME! Truly.

 

What can SLTs learn from cancer trials?

 

Let me take you back to the beginning. When I first applied for my NIHR fellowship I had to put down a training plan – and cost for this – in my application. At my consequent interview one of the points made by the reviewers was that I would need more training in trials and mixed methods. To this end I have sought out various training opportunities to equip me with more of these skills. Frequently this has meant attending courses not entirely designed for the likes of speech and language therapists. But (I reflect frequently) this isn’t anything new for an SLT. We are often in the minority and by now I quite enjoy the challenge of trying to apply other perspectives to our work- or tweaking concepts to suit what we do!

 

To address some of this feedback from the reviewers I recently attended a couple of half day courses designed for people involved in running cancer trials.  One of the most important reflections I made during this course was around culture. The course facilitator explained that around 20 years ago there were real difficulties recruiting people to participate in cancer research, Consequently the National Clinical Research Networks were set up. As a consequence of this organisation ( who provide research nurses and so forth to help recruit and collect data) it has become part of routine culture for people to participate in cancer research and around 1 in 6 people with cancer now participate in research. At present we have no such figures for SLT. There are lots of barriers to research in clinical SLT practice. Including culture – perhaps we need to consider how we can address some of these issues. Perhaps we actually need to do more research and more trials in clinical settings to break down this culture.

But culture is not the only barrier. Going on this course challenged my thoughts on what else we could borrow from the cancer trialists. Here are some of my reflections:

  • For starters we need quite a large number of fairly homogenous patients to do a proper RCT. Or perhaps not. Perhaps simply using well matched or groups that are evenly heterogenous. Never the less we need quite a few people- perhaps we need to be attempting more multi-site and international collaborations?
  • When we choose our comparator condition we might want to borrow from practice in cancer trials. Working with some of the rarer cancer groups  does not warrant a “standard practice” comparator. Often there isn’t one that a ) is standard practice and b) is already proven.
  • What about outcomes? We need to choose clinically relevant outcomes. Ones that change practice. Ones that convince the skeptics. But sometimes we aren’t able to quickly or easily measure the exact thing we are affecting. In these cases it’s OK to use a related or ‘surrogate’ measure  in cancer trials. Perhaps we could fall back on confidence more often? Also of note- when you are piloting a research study (phase 2) you may not use the most meaningful measures but those which give you the information quickly in order to plan for the larger phase 3 RCT. Then use the most meaningful ones in that phase 3 trial.
  • The cancer trialists will generally use a phase 1 study to identify maximum dosage- using a 3 by 3 design where 3 people are given a dosage calculated on the minimum required to make a change. If no one has an adverse event then 3 are given a  higher does, this goes on until at least two people have adverse events in the group of 3. The level below is then deemed the maximum tolerated dosage. Can we reverse this model for SLT- can we work out the minimum dosage to make a change by reducing the dosage incrementally? We need to know what the minimum dosage is that commissioners should fund. So can we borrow models like this?
  • In cancer trials tumour size is often used as an outcome. In these cases the tumour is measured at baseline, then during therapy, after therapy and then some time later. If the tumour shrinks by more than 30% this is deemed a partial response, if it increases by more than 20% this is a progressive disease. If it remains within the 20% or the 30% boundaries this is stable disease. Could we consider some of these percentage thresholds as applicable to our progressive patients? It is ever so difficult to measure if therapy is effective in progressive aphasia and stable disease is difficult to define. Perhaps we don’t need to re-invent the wheel? Can we model their response models?

 

 

 

 

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Learning form the masters: Cognitive Stimulation Therapy Conference

 

My second supervisor, Aimee Spector, and I.

As a clinical SLT working with older adults I used Cognitive Stimulation Therapy or CST when I first started on the inpatient dementia wards at the Maudsley hospital. We used to run groups (the Occupational Therapist and I) with around 4-8 participants. The groups ran twice a week for 7 weeks using a manual to guide us. The manual provided guidance on activities- inviting participants to choose a group name and a group song which we used ever week. Orientation tasks, and a main activity each week such as word games. If I am honest I didn’t really know much about CST at this point. I just knew it was well thought of and well received. It was valued both by the team and the patients. I had never been trained in this. I just got on with it. I did go away and look it up though. That is when I really recognised that CST was a well evidenced approach- a randomised controlled trial (RCT) had demonstrated improvements in quality of life and communication for people with mild-moderate dementia participating in groups at care homes in the UK.

A few weeks ago, one of my supervisors suggested I might like to attend the 2nd International Cognitive Stimulation Therapy Conference with her……in Hong Kong. It was my supervisor who had done that RCT I described above. Obviously, I jumped at the chance. I speedily organised myself- submitted a poster, was accepted, booked attendance at the conference, a flight, accommodation and then of course arranged childcare. Right all sorted. This was an opportunity to learn from the masters- CST is THE non-pharmacological intervention recommended by the NICE dementia guidelines and in the International Alzheimer’s report. There is a Cochrane review demonstrating CST has positive outcomes for people with dementia. As a discipline, SLT can learn from this. As an individual, I was super excited to learn about this process and see if I could apply any of it to my work.

Aimee Spector presenting an update on the timeline of CST

I arrived in Hong Kong on Wednesday this week. The taxi took me from the airport to Hong Kong Island where the university of Hong Kong (HKU) is located and I dove straight into a PhD meeting. Listening and sharing ideas between HKU and UCL students. On day two I attended a CST training day hosted by a wonderfully pragmatic psychologist from Bedford. On day three I put my poster up and attended the first day of the conference proper. It was so stimulating. People presented from Hong Kong, England, Wales, China, Italy, Brazil, America, New Zealand, Holland, Denmark and more. There were representatives from even more countries than this in the audience. In fact, CST is being reportedly used across all continents of the world except Antarctica. It has been adapted and translated to suit the needs of all these cultures. During the conference, we heard all about this- and about the other exciting ways in which the intervention has been developed and implemented to suit the needs of people with dementia. This was an inspiring meeting of minds, cultures and personalities. On Day four I attended the final day of the conference. And on day five I am flying home. Phew.

 

Day 2: CST Training session in Hong Kong
The English/American/NZ contingent at a Buddha temple with our HK hosts

CST has been updated, translated, adapted and refined. Pilot studies and consequent trials have confirmed its effectiveness across numerous countries. There is guidance for this process which includes consulting with local stakeholders to ensure its relevance. CST now also includes a maintenance program to support people beyond the course of the original intervention. Most recently the individualised CST manual has been designed, tested and trialed for delivery by caregivers (often family). There are also apps and video-conferencing CST on the horizon. Yet the research carries on. What is it that makes a good candidate for CST? Do neural substrates change as a result of CST? Does it work even better with exercise alongside?

The process of adapting CST to different cultures- a flow chart. And below example materials from the Italian and the Chinese versions

  

It is so valuable to understand this process. To see an evidence based intervention being developed, refined, piloted, tested, implemented and adapted. Yet this is only one intervention. One of the founding members of CST; Bob Woods, highlighted that people with PPA should receive CST alongside other evidence based cognitive rehabilitation interventions. Better Conversations could be one such intervention. The appetite for well designed, evidence based interventions is there. The aging population continues to increase throughout the world. I feel inspired to ensure I continue to endeavour to develop the research around Better Conversations with PPA. I feel that rigorous research and a well-considered, thorough implementation process can work. I have made so many friends and developed so many relationships with people who are excited about what I am doing as well as what CST offers.

The poster I presented at the conference

Right so back to the grindstone – I must get on with actually doing it now.

 

Engaging the experts in every which way!

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!

I am the master of my own admin.

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:

  1. Keep a to do list
  2. Put EVERYTHING on your to do list from sending specific emails, submitting expenses, making phone calls to writing journal articles
  3. Tick things off on your to do list daily (or twice daily)
  4. Add things to your to do list daily (write a brand new one every week)
  5. Keep your to do list with your diary- to see how these things will fit around your daily activities
  6. 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).
  7. Make phone calls before lunch- don’t think about the call, just make it.
  8. Prioritise people who gate keep your study- NHS ethics, R&D, SLT collaborators.
  9. Prioritise work that affects the start of your study- the sooner you do it, the sooner the study opens.
  10. Check your Gannt chart and your PhD minutes actions regularly (make sure you have minutes and actions and store them safely)
  11. Be happy and polite and occasionally apologise.

 

 

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.