Big News: Blogging about my first journal article from my PhD

UK wide survey shows that people with language led dementia often do not to get referred to SLT

Exciting news: The first journal article from my PhD work was published last week in Dementia. So I thought I would try a blog post to accompany it.

I regularly write a blog for the dementiaresearcher.nihr.ac.uk site as a guest blogger, and I wrote this for them. But I have been pondering on whether to post the same one on here and have decided that yes I will. Writing this blog about my journal article took a little longer than my usual blogging time, but was well worth it.  I just wasn’t entirely sure how and where to begin.

I have been chatting to a few people about how valuable it can be to blog about the article to coincide with its publication. I have also found some advice on how to do this from a brief internet search. The advice I have collected so far recommends writing a fairly descriptive heading summarising some of the main findings (see above) and using relevant and tweetable or hashtag type phrases in no more than 140 characters and creating a trailer paragraph or set of points to pique interest before the article begins (see starting points below). Then more or less omitting the methods (other than to say it is a survey), aiming to cut it all down to less than 1000 words (ooooo let’s see how that goes), providing only a line or two of introduction and discussion start the article with something high impact- a quote or something topical (hmm not sure I can quite get that down), move into the main findings and unpack it a little, before finishing by summarising things in a slightly different fashion that perhaps directs the reader to the next step in the research you are doing. Lastly adding the full title of the article and the link to the open access version.

So, if you would like to cut straight to the article the link is at the end, but otherwise I have tried to summarise it in the way described above. Here goes-

 

  • SLTs report a growth in the number of people with language led dementia referred to their services, yet identify ongoing barriers to accessing their services for many others.

 

  • People with language led dementia are more likely to get referred to SLT for interventions if they are from high socio-economic background and from Scotland or the south of England

 

  • SLTs and other health professionals need to build a clearer care pathway so that referrers know where to send people with language led dementia.

 

Language led dementia (or primary progressive aphasia; PPA) is associated with Alzheimer’s disease and frontotemporal dementia. People present with a gradual loss of language over time – for example word finding difficulties, difficulties sequencing sounds or sentences or difficulties understanding or in reading and writing. It seems logical that speech and language therapy could be useful for these people. This UK wide survey of speech and language therapists demonstrates that the number of people with PPA being seen by SLTs are slowly increasing with respondents reporting on average having two or three on their caseloads in the last 18 months, an increase from the previous period. Most people with PPA are being seen in outpatient or community settings across, referred by neurologists (who perhaps have some experience of the role of SLTs from their work with post stroke Aphasia) for word finding difficulties but not much else. The people with PPA being referred are generally English speaking, from higher socio-economic backgrounds and in their 60-70s and are being referred 1-2 years after diagnosis. SLTs reported that there remain many barriers to accessing SLT for this group of people; including a lack of knowledge about the role of SLT and restrictive service criteria that prevents them from being seen in rehabilitation services. Where people are being seen, they are often unaware of what their diagnosis means. Where SLT are able to offer therapy (many services are not able to offer anything) they are able to offer an average of four therapy sessions where they prioritise communication training above other intervention approaches. Yet the research evidence to date in this area of speech and language interventions for SLT is historically predominantly focused on impairment based tasks such as word relearning. This highlights the need for further research demonstrating the effectiveness of the communication training approaches. This demonstrate a gap in the clinically relevant research literature which our forthcoming work on developing and piloting a communication training intervention for people with PPA and their families entitled Better Conversations with PPA (BCPPA)- the protocol is due for publication in the very near future (Volkmer, Warren, Spector, Beeke, In press, Pilot and Feasibility Studies)

 

So, my current article is entitled:

 

“Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK” and can be found here: http://journals.sagepub.com/doi/abs/10.1177/1471301218797240?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed

 

 

 

 

 

 

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Building a job/grant application

I have often found myself applying for jobs with an apology as my opening line. I seem to start by highlighting the areas where I am not sure if I really fit the criteria. Where I have the least experience. I assume they want to know how much of a burden I might be. By the time I have gotten around to the good stuff I have also emphasised that I would do my best and try really hard, even though I am not sure I have done half of this stuff before. Over the years I have realised that although this might be how I feel inside (the honest truth) this is not what an employer wishes to hear. I have been an employer and conducted interviews. When I think about those interviews I can recall the way my heart sank each time an individual started answering me in this way. I didn’t want to consider the time I would need to spend working on getting them up to speed- I wanted to hear that they could be an asset to the team.

Having said that I know I am not the only SLT who presents themselves in this way at interviews. I have been asked to look at job applications and practice interview questions with a few friends. Recently I was describing to one of these friends that perhaps she should consider the whole process a little differently- I asked her if she were to employ a builder who she would consider:

1) The builder who told her he wasn’t sure if he could build it,  might need to get some outside assistance but will try his best

OR

2) The builder who says it’ll be no problem and he’ll get it done

OR (beware)

3) The builder who knows best- who tells you your ideas are all wrong and he has a better idea.

My friend thought this was ever so useful. Consequently she sat down and completely re-wrote her covering letter. She stated that she had never really thought of it all this way- she hadn’t considered her employment as an investment. Yet although promoting oneself as the right fit for the job, with confidence, is valuable, it is also important to listen, take feedback and advice to ensure you can be the best fit.

I have been endeavouring to fit this analogy to my research self. And at the recent RCSLT Research Champions day I attended the grant funding workshop (as of course I do need to think about my future beyond my PhD now argh). At this workshop I found myself pleasantly surprised by the approach being described for grant writing, it really isn’t so different. It is called The 10 key sentences. The idea is that these sentences should start with an introduction that explains what the research will achieve, why it is important and how your going to do this in 10 sentences, without using references. Once this key paragraph is written you can then break it down and address each area in turn, with the relevant evidence. I interpreted this idea as demonstrating what your selling, why and how. By presenting the solution first, rather than the problem you are a little more like builder no. 2. You are demonstrating your value as an investment. By presenting the why (the problem) first, which is what I am tempted to do, your a little more like builder no. 1. But if you are too concrete and don’t accept help, advice and ideas your more like builder no. 3.

Having said all that I will need to apply this. Execution is the harder step. Especially with that voice inside your head telling you to tell the complete truth about your weaknesses not your strengths! Nevermind- I have a bit of time until I need to think about this toooooo seriously……………………………………………….

My career: How far up the ladder am I?

 

When I got my fellowship there was a five minute period where I thought I was the bees knees. Professors and super senior staff within the trust I worked with started greeting me in corridors. SLT peers congratulated me on my achievements. I had just appeared in a TV documentary on brain injury and a couple of people at conferences recognised me from that. I wondered whether I was kind of hovering on the top rungs of my clinical career ladder- I had made it. I’d written a book, been on TV and gotten the precious funding I needed for my PhD. 

 

Around this time I remember a good friend subtlety suggesting that I might feel very different once I’d started uni- that it might be challenging being at the bottom of the pile. Shortly after I started another SLT PhD colleague described the dawning realisation that the PhD is actually the very bottom of the ladder – of realising that she knew nothing really. 

 

I can’t say I felt quite like that- I actually felt quite valued. I feel that people in my department genuinely respect my clinical experience. I also realised that I had jumped from one ladder (my clinical SLT ladder) to another (the academic ladder) and that although they stand close to one another they don’t necessarily intertwine. I realised that in general PhD students are at the beginning of their academic careers. That I knew little of academia, of research methods and statistics and that it was only fair that I stood on this bottom rung. I also realised that for me it wasn’t really about the classic career ladder. The NIHR understands this conundrum and is endeavouring to find another route for clinical academics, firstly by paying them a salary to do research that has impact. They are supporting clinicians to explore a research idea that truly belongs to them and advocating that this be linked to their clinical work. But NIHR funding is not that easy to get.

 

Having been to a number of talks on career pathways recently I have been pondering where I fit. The last talk I went to suggested the importance of going to a different academic organisation for a post-doc position, and further post-docs beyond that. This assumes one has the means to move around. And how does one maintain the clinical skills and link in all this? Does having a clinical role part time along side an academic role really work? With one foot on both ladders? I would like to think it does. I know some clinical academics who have made this work. Can I make this work for me? Perhaps it is the last question that is the most important – no matter what ladder I am on and where – can I make this work for me?

Celebrating the NHS: working and studying in the UK.

I am sensing a theme this month…. off the back of my last post (working and studying overseas) I have decided it might be nice to consider the other side of this discussion. Now if I were writing this blog as a piece of qualitative research I would need to qualify it with the following statement (or something similar): As a British citizen who has done most of my growing up, living, working and studying in the UK  I am of course rather biased in favour of living and studying here. However, I do feel I can take a somewhat balanced view as someone who was brought up with a German father (he lives half the year in Berlin and uses the health service there when he needs to, plus my sisters both did a year of university in Germany ). Also I lived in Melbourne Australia for 5 years and completed my Masters of there (see my last blog post). Having declared my biases I feel I can now continue.

I completed my undergraduate degree at UCL in London. We were the first year to pay our degree fees – although at the 11th hour the NHS stepped in and started funding the medical subjects (how amazing is the NHS!). Yet with a predominantly white female middle class cohort we didn’t necessarily reflect the types of patients we see in clinical settings. Some of the people who most need the support of health professionals, such as SLTs, are often male (at least half if not more) or from lower socioeconomic backgrounds . Luckily the NHS continue to pay these fees (for now) thus ensuring a more balanced work force. My first point of simply this- that this amazing relationship between NHS England and the Higher Educational Institutions means that there is slightly more diversity in the health professional population at present. We have mature students with life experience, people from ethnically and socio-economically diverse backgrounds. And more males (although of course this gender diversity isn’t dependent on the fees being paid!!).

I started work in the NHS as a fresh faced 22 year old in east London. One of my favourite things about the NHS is that every patient I saw was provided with the same opportunities. The NHS is developed and delivered on the principles of population health. Treatments are chosen and delivered based on what works for the majority of the population. This scientific approach ensures a rigorous and thorough approach to delivering healthcare to everyone across the UK. If this does not work then the next most likely approach is chosen, then again the next most likely. Symptoms are treated as evidence that point toward the cause and the solution. These are the methods that have been used to success within the NHS for the last 70 years

Unfortunately when there are not adequate finances to deliver the NHS services to everyone involved then some services may be deemed less of a priority- for example speech and language therapy for people with dementia. This can result in inequitable services across the UK. Advocating for these services, demonstrating the value that these services can have for individuals, their families and the communities they live in may be key to ensuring the longevity of the nations NHS services. Demonstrating that speech and language therapists can improve communication, conversation, relationships and potentially a persons ability to live independently for longer has implications for reducing the financial burden on the community as our population ages. This seems a suitable gift from a speech and language therapist on the NHS’s birthday.

Comparing the systems: working and studying overseas

Traveling for a year between school and starting university or between finishing university and starting work was and is not that unusual nowadays (the gap year). Traveling the world with a backpack or inter railing around Europe staying in hostels is a romantic and exciting idea. I myself spent a long 7 week summer inter railing around Italy with a friend in 2001. Lira was still the local currency and I was a young and carefree student, happy to survive on a diet of cheap bread, with an endless summer holiday that needed filling. Holidaying in a place is, however, a far cry from living it. In 2005 I moved to Melbourne and lived and worked and studied there. I was there for 5 years in total and I worked as a speech and language therapist for almost all of that time. I also did my Masters over there – through Flinders University.

Living and working in Melbourne – which is in the state of Victoria (Australia has six states- New South Wales, Western Australia, South Australia, Queensland, Tasmania and Victoria) was a great experience in all different ways. I worked at two large health networks over that period – Dandenong Hospital, part of Southern Health, and Royal Park Hospital, part of Melbourne Health. I worked across inpatient neuro-rehabilition, outpatients and homebased neuro-rehabilitation. My favourite was working in people homes. I got to meet so many people within the local community. I met Greek, Italian, Croatian, Lebanese, North African, Vietnamese and Chinese migrants. I met one pound poms who had famously traveled here by boat in the 50s, I met Australians who had been there for generations descended from explorers. I met a survivor of the Tiananmen Square Massacre in China and Australian indigenous people who were living in Melbourne. Working in another culture is a great experience. Not least that I got to understand the different social and political systems.

The health service in Victoria works differently to here. It is a public-private partnership. The unions negotiate the terms of employment for the health care professionals within the state. And each state is different. Consequently the networks employ everyone on these same terms- which are renegotiated every four years. Being a union member or representative as an allied health professional is usual in Victoria. In general patients are able to access acute and hospital care with no immediate costs to them. But to see a GP, or to have some non-acute services (e.g. maternity scans) you had to pay and then submit for a rebate through the Medicare system. If you didn’t have the means you could go to certain GP services who bulk billed the Medicare system, but this was not usual. Most of my friends had private healthcare and received tax rebates in compensation for this.

As a therapist working in an inpatient setting I was able to provide services in much the same way as I had done previously. Although in some outpatient and community settings we charged attendees a small nominal fee per week and we “sold” them the thickeners we prescribed. Selling thickener was a little tricky- occasionally I had to ask myself if someone was refusing to buy it because they didn’t have the money, because they didn’t have capacity or because they were making an informed decision not to follow my recommendations. As a therapist I was also happy to provide a much more evidence based and consistent service- I had annual leave cover when I went on leave and I had less constraints on the intensity and length of services I provided. We applied for funding to set up groups and delivered innovative multidisciplinary interventions for people with dementia.

I applied to do a masters in Clinical Rehabilitation at Flinders University and was able to complete the qualification via distance learning- much of the higher education post undergrad is delivered in this way over there. On this course we learnt a bit about delivering all types of services, even about telepractice to rural and remote settings. I found this a useful course to develop my clinical and research skills. I learnt about research methods and statistics. I completed a project supported by a local neurologist who acted as a mentor and celebrated my desire to undertake research.

When I returned to the UK I brought with me knowledge of a different approach to healthcare commissioning and delivering education. There are pros and cons to both the UK and Australian models. Neither are perfect but I certainly feel better off for having experienced both. Working and studying in Australia afforded me experiences that boosted my confidence and expanded my horizons. I wouldn’t hesitate to do it again. But, for now I am happy to be back in the UK, in London, at UCL.

Mental health in academia: my mental fitness strategies

It is increasingly recognised that people in higher education and academia are at particular risk of mental health issues yet often feel unable to speak about these issues for fear of losing face and being considered incapable of doing their jobs or finishing their studies. This issue isn’t of course particular to academia, there are many industries where speaking up about mental health issues may impact on the persons professional reputation and perceived skills. In fact broadly speaking mental health issues are still frequently a stigmatised issue in our society.

But we are getting better at this. Slowly. There is more money being invested in health care services and research, albeit not enough. People are more willing to share their personal experiences both with employers and colleagues, as well as with friends. I was recently at a conference where the lead academic speaker for the day from the hosting department shared her rationale for becoming interested in disability. This revolved around her own mental health and a very personal experience with depression and suicidal thoughts. This was also an extremely successful and impressive individual, who spoke eloquently and emotionally on both disability and mental health. What a breath of fresh air.

I confess I cannot say I have experienced any mental health issues myself as an academic. I  have been a bit up and down  at various points in my life though – and this is probably very normal (e.g. during my time as an undergrad studying at UCL when I was struggling with grades, friends and various social challenges; oh and when I got pregnant and neither my husband or I were employed, we had just moved countries and were living on my parents couch). These experiences have helped me understand myself. These experiences have helped me identify where my threshold is and what maintains my mental fitness.

Mental fitness is a term someone mentioned to me just yesterday- they were suggesting that mental fitness is a term we could use to describe how we keep ourselves mentally well and healthy. We discussed that actually we all have to work at this. That mental fitness requires work, specific strategies and that these are different for each person. Not all that dissimilar to physical fitness. For me my mental fitness regimes includes:

  • Exercise: I love to run. Or do any kind of exercise. I suspect that is why i found pregnancy so difficult. For a long period I couldn’t run during my pregnancy. I now run about 2-3 times a week, and sometimes I swim or ride my bike or even do some yoga. Without making time for these i notice I can’t concentrate on writing or reading quite so well, I get fidgety and my husband would suggest that I also get very angry! So even when I have too much work on- I still prioritise this. As I know that Ill work better for having been for a run.
  • Family and friends: I do not feel guilty for spending time with them. I make sure that when I spend time with my family I am present. with them. Equally, I do not feel guilty about not spending time with my family when I am working. Although if I am honest I feel guilty about both- but i try to keep a balance in terms of time This seems to balance the guilt so it doesn’t entirely overwhelm me.
  • Doing work that I feel is important: I have found that choosing work that feels valuable and worthwhile makes me feel like I have purpose. Sometimes when I am bogged down with something technical and tricky such as an ethics application or statistics or IT issues I find attending a support group, giving a presentation really helpful. Speaking to SLTs and people with PPA who will hopefully benefit from my work makes it worth it.
  • Getting work done: I also find I have a few strategies to make me feel like I am getting something done. Both clinical and academic work can sometimes feel like your wading through an endless bog of sticky mess, you turn another corner and there is another mile ahead of you with no end in sight. So I have learnt to highlight the things I do get done so I feel a sense of achievement. I have to do lists with every small or large activity listed. On a daily basis I tick of what I have achieved and carry over ongoing tasks. This makes me feel like I am actually making progress and not sinking into a pit of despair.
  • Prioritising: I really like to write blogs. I really like doing presentations. I really enjoy networking. So I prioritise them alongside the harder stuff. I make sure every hard piece of work I do I reward myself or prioritise the work I feel I am better at. Even if it isn’t as ‘valuable’ or as ‘important’- it is important to me.
  • Diet coke: For those who know me well they will also know that I drink a lot of diet coke. I do so love diet coke, It makes me ever so happy. And although I know it could perhaps be bad for me- I drink it. And I love it. It provides me with quality of life. So my last tip is enjoy the odd sin! Even if my mum, my children and lots of friends and colleagues suggest it might be bad for me I feel no shame and no guilt when I crack a can in a meeting or a talk. Diet coke makes me feel better when nothing else can!

 

Doing it for the girls: being a women in research

I went to a wedding a few years ago and was chatting to a girl I kind of knew from Uni. She explained that she now worked in finance – fund management to be exact. Coincidentally she had come across my Mum – my mum is a journalist who writes about finance. This girl had approached me to tell me what a legend my mum is. She described her as a role model for all the women in the industry. If I am honest I was a little stumped. My mum is just, you know, my mum. But my mum started working, continued working and has a successful career in journalism since the early 70s.

My mum gave me some really useful advice before I went into my fellowship interview 3 years ago. She told me to “think like a man”. Initially I was rather surprised. Surely this is sexist! By thinking like a man we acknowledge a perceived difference. That somehow men are more likely to get these kinds of grants than women in 2018!? That men feel more sure of themselves. But it really did help. I recall waiting to go into my fellowship interview with four  men- all looking super clever in their business suits. I decided that the other people in that waiting room looked like they knew what they were doing, like they had it all together, like they were winners. I couldn’t decide whether to keep my cardigan on or off. What would make a better impression? Yet no one else in the room seemed to be worrying about anything (on the outside). Consequently I remember thinking oh well- I’ll just go in and go for it. I pretended to feel like the men in the waiting room looked. Perhaps simply encouraging me to pretend that I was someone else who knew what they were talking about (no matter what the gender) was the most useful part of my mum’s advice.

In general being a women has never held me back. I am a female with two sisters. I went to a girls school. Then speech and language therapy; a predominantly female profession. Perhaps this journey has actually given me an advantage. Having children and taking maternity leave is usual. Part time job roles are common. People often split posts – even managerial posts. I feel that the profession is well equipped for families- it is easy to continue developing a career and being an active parent (my sisters in law and finance have had to struggle somewhat more with this balance).

Before I went into research my colleagues suggested that this career trajectory wouldn’t be any where near as accommodating for these needs as working as an SLT. People did and still do say that doing research or further study whilst having children must be far too difficult to juggle. I have actually found the opposite. Doing this has worked extremely well for my family. Research is much more flexible- I can go to school assemblies, take my children to medical appointments and host play dates without taking any additional time off work. In fact none. I tweak my hours to suit my needs- I work in the evenings, in the car while they do their various extra curricular activities and occasionally at weekends if I want to.

And there are some wonderful female role models in my profession and more generally at UCL. Not least my very own supervisors- both very successful female researchers at UCL. The head of my department- a female. The women who built the building I study in- a female. The building itself having been named after two sisters who invested in the first women’s medical college which is what the building then hosted.  I feel ever so lucky, if I need to I now pretend to feel like they all look- strong and confident and clever. I try to think about what my supervisor would say or do in this situation. I try to think about the phrase that my head of department would use. I try to harness the drive that those first female medical students would have had. All these wonderful females to aspire to on my research journey.