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.

 

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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.

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.