Girl Power: The origins of Chandler House, UCL.

The entrance to the London Royal Free Hospital School of Medicine for Women.

Speech and language therapists are overwhelmingly female. Don’t ask me why- but I graduated from my training (at UCL) with nearly 40 other women. The building I studied in was and is called Chandler House. And speech and language therapists (SLTs) still train and study here. As do the SLT PhD students. I recently found out the origins of our modest, by UCL standards, building. And it’s quite inspiring. The building was built for a formidable women named Elizabeth Garrett-Anderson. She was by all accounts a determined and passionate person – keen to study medicine at a time when people like Henry Maudsley (famous for improving the standard of mental healthcare) stated that women, such as Elizabeth, should not be educated too much as their feeble minds wouldn’t handle it and they would all be driven to hysteria.

 

Although women could not study medicine Elizabeth nevertheless  attended all the medical lectures and, tired of having her thrown out, she was allowed to stay. Eventually having completed all the required teaching Elizabeth was the first women to qualify as a doctor in Britain in 1865 when she passed the Society of Apothecaries exam- they promptly forbade further women from taking these exams. But it was not until 1873 that she became the first female member of the British Medical Association.

 

Chandler House was a consequent development of her successful medical career. In 1874 Elizabeth co-founded the first school of medicine to train women; The London School of Medicine for Women. They occupied a large house around the corner from where Chandler House stands. By 1897 the school had become too big (170 students) and Elizabeth employed her friend and architect JM Brydon to rebuild the building where it currently stands between Wakefield street, Handel street and Hunter street. As dean of the school Elizabeth saw the school join the London University in 1883 and later the Royal Free School of Medicine – part of UCL. Building work on the school finished in 1897/1899.

A decorative stone from outside the building- I haven’t found much evidence of what these symbols mean. My guess is the G stands for Garrett, the B for Brydon (the architect) and the S for Sophia Jex-Blake who co-founded the medical school with Garrett.

The school lives by the love and labour of those who serve her

The ceiling rose.

Elizabeth created a place for people, for women, to love learning. The building has now been divided, and hosts not only part of the UCL department I work in, but also a GP surgery and a Health Centre. Our part of the building previously housed the laboratories and taught chemistry, physiology, anatomy and physics! The building has been praised for its excellent examples of handsome Queen Anne style architecture and there are certainly some lovely features. There is an old board room with rather important wooden paneling, a fantastical ceiling rose and an arch in the hallway reminding us to love learning to keep the school alive.

 

Elizabeth Garrett-Anderson came from moderately humble beginnings – her father was an entrepreneur who set up and expanded his malting business in Aldeburgh. Elizabeth was the second of eight children. She and her sisters were educated initially at home and then at a boarding school. Her father supported her in her endeavours to become a medical doctor, both financially and otherwise. Yet Elizabeth was not the only impressive Garrett sister. Millicent Garrett was an influential member of the British Women’s Suffrage Committee.

 

It was only recently that I was part of a twitter discussion (a mini storm) on our role as clinical academics. We all agreed we must advocate and fight for this career pathway. We must push for equal opportunities alongside medical professionals. Elizabeth is an inspiring story of what a women can achieve in mans world. I imagine she would approve of our mission  and would support us in our ventures.

About Elizabeth:

https://en.wikipedia.org/wiki/Elizabeth_Garrett_Anderson

https://london.ac.uk/elizabeth-garrett-anderson

About Chandler House:

https://historicengland.org.uk/listing/the-list/list-entry/1379142

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I should be writing………….

The main focus of my day to day working life at present is basically writing. Writing thesis chapters (where I feel completely out of my depth), draft articles (that will be rejected and need re-writing) and book chapters (that no-one will read). Writing is, however, interspersed with lots of other things. In fact other things make such frequent appearances that I often find it difficult to get on with writing. Other things manage to raise their heads, wave their hands and emphasise that they are far more important in that moment than writing. This consequently distracts me (often appropriately) from the task at hand and draws me in to an abyss of doing other things.

 

Now I know it is not unusual to feel disheartened by the writing process. I recognise that getting distracted is also rather common. The best tip I have been given is to just get on with it- shut up and write! This is a writing approach that has been described in detail by academics, creative writers and journalists. There are even blogs dedicated to this approach: https://thesiswhisperer.com/shut-up-and-write/. My own approach is far more literal. It requires me just to sit down and write whenever I have ANY time at all- it means I can get 45-60 minutes of writing in after I put the kids to bed, before my husband gets home from work (having anticipated this and prepared enough dinner the night before that there are leftovers for an entire week), it means I write in the car whilst the kids are doing their various extra-curricular activities (no chatting with other parents), it means I de-prioritise household chores (I love this bit), it means I don’t chat all day with my work colleagues either (only half a day).

Looking for tips on how to write can become a distraction unto itself. I recently went to a workshop on writing in our department where a number of suggestions and recommendations were made. So, in the spirit of distracting myself with important stuff I thought it might be useful to share a few of them here:

 

  • PhD students should aim to publish one or two journal articles prior to their vivas; feedback from reviewers an be incredibly useful and give you lots of insights to the kinds of questions an examiner might ask i.e. it is great revision!
  • Looking to the future: New lecturers should aim for 1-6 over census period (2 first author papers per year).
  • There is no recipe to writing
  • Write regularly
  • Schedule time to write and defend it!
  • Write down your writing goals (fold a piece of paper into 12 squares- one for each month of the year, write down your other main deadlines etc, then insert your specific writing aims into each month)
  • Balance the number of reviews you do with the number of papers you write
  • Prioritise 1. proofs and editing, 2. hard deadlines (grant applications/grant reports), 3. revising reviewer comments, 4. first author manuscripts, 5. stuff for other people, 6. blogs
  • Use a spread-sheet to set goals and monitor progress every day (enter the days of the week in one column, your word count goal in another, your actual word count in another, add up total word counts as you progress)
  • Top tips: Get off-line, be regular, take short sprints, write anything as long as its work, do it together

 

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 (?)

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?

 

 

 

 

Sent from my iPhone

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!