In this blog for our special series on #LifeAfterStroke, Annette Dancer and Claire Mitchell give us their perspectives on why research is better when researchers and people affected by stroke work together, and what they gained from their collaboration.
The best thing that happened to me when I carried out my PhD into dysarthria (slurred speech) after stroke was meeting Annette, who became my research advisor. She tracked me down online when she was ready to find out more about her speech problems. This is typical of her; faced with a problem she gets on and sorts it out. Her honesty around her stroke, her enthusiasm and brilliant sense of fun enhanced my research experience no end! We have worked together ever since Annette got in touch. She has been an advisor for my research and wrote a blog to accompany the Cochrane reviewCochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. of interventions for dysarthria that was published in 2017. She has presented at a conference with me and has embraced every opportunity to participate.
I had worked as a speech and language therapist in the NHS for twenty years prior to starting my PhD and this change of direction was a steep learning curve. I learnt a lot, no question about that, but my most memorable lessons came from working with Annette. So here are my top five things I’ve learnt from working together:
- Hidden talents: Don’t underestimate your research advisors. There are a lot of talented people who have experienced ill health who have so much to offer researchers even if their expertise isn’t in research. I didn’t know Annette was such a talented writer, she wrote her blog on living with dysarthria with such emotion and humour.
- Honesty and education: It surprised me that Annette had never been told that the way her speech had been affected after her stroke is called ‘dysarthria’. Now she knows there is a name for this condition she tells others about her dysarthria in order to educate. So, plain English and giving people information is proving key to getting people involved in research as advisors as well as participants.
- One name doesn’t fit all! At a conference Annette was asked if she felt defined by being called a ‘stroke survivor’, her response was characteristically refreshing “I would rather call myself a stroke tolerator”.
- “Mild you say?!” It was interesting to learn that what is deemed clinically mild may be viewed very differently by the patient. One person’s mild is another person’s severe depending on how the condition impacts on them and their life. It is essential to consider the impact on the individual in research. We must not limit ourselves by meaningless phrases.
- Short and sweet: Always discuss your findings with your research advisors. They will help you to be brief, clear, concise and relevant to your audience.
Research takes a long time! Explaining to Annette how little we know and how you have to do preliminary research to find out if you can then do a big research studyAn investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. could have been demoralising. However Annette, the eternal optimist, made me think about this differently. Ironically, she felt this protracted process was quite exciting, not demoralising, as we’re not saying that a treatmentSomething done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. doesn’t work or one doesn’t exist, we are saying we don’t know enough yet. She thought that sounded really positive, that we could find this out – together!
I was lucky not to lose sight during my PhD of what I was doing and why, mainly because of my work with Annette. She also happens to live in an absolutely beautiful part of the UK in the Holme valley, the views from our working lunches at her favourite garden centre were fabulous. (see photo!)
Annette’s story: what I got from getting involved in research
Well, free lunches and a day out apart, a lot more than I could have imagined.
Just for starters becoming a research advisor improved my self-esteem, confidence and speech; gave me a sense of worth; provided a way to monitor the progress that I had no idea I was making.
Before getting involved in research I thought I was pretty much done for, usefulness-wise.
My life had become rudderless.
Nothing in my life could ever be the same again.
Stroke arrived and my sense of self disappeared.
Things were done to me, or for me.
I needed something that was done by me.
In seeking out a research project I worked on the assumption that even if I didn’t gain much, what had I got to lose that I hadn’t lost already?
I was a real Poor Me!
In hindsight I’m amazed I got involved in research, I felt so negative.
Having decided that a research project was unlikely to do me harm and might just do me some good, I found Claire’s Readyspeech project via the internet.
(Now mine was no altruistic leap into the unknown.
I’m no moonwalker… No “One small step for man, one giant leap for mankind”.
My motives were entirely selfish.
I wanted a research project to benefit me.
If mankind benefits from my input that’s a plus, but I’m no Neil Armstrong).
But, like Mr Armstrong’s feat, the rest is history.
I’m a different person now.
My step into the unknown certainly benefitted me.
All down to Claire and her Readyspeech project.
Not only did involvement in research give me something to do,
it gave me purpose.
It put focus in my days.
It was ‘mine’ at a time when there seemed to be so many other fingers in my pie.
It gave me a voice in more ways than one.
It gave me an understanding and appreciation of the real need for patient involvement.
So,what did I gain?
Where do I start?
. Those free lunches and a day out. (Claire knew what carrots to dangle)
. A sense of purpose in what had seemed a purposeless existence.
. Hope (not only for my future but for others too).
. Support and encouragement from people who are passionate about their subject and who appreciated my involvement.
. A sense of achievement.
. A new, more realistic me.
. A sense of self-worth and improved confidence in all aspects of my life.
. Feeling part of something, part of the team.
. Access to expertise about my particular speech issues.
Oh, and not forgetting the improvement in my speech.
And a title… research advisor…how grand!
This is by no means an exhaustive list
What did I lose?
At the riskA way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. of over-egging the pudding I really can’t think of a downside to becoming a research advisor…..
unless you count the state of the tea on the train over to Manchester.
In conclusion… the whole research experience was enhanced and improved by researcher and patient collaboration.
To see things from each other’s perspective kept the momentum going in the whole process.
A win-win situation if ever there was one, and from the patient perspective…. What have you got to lose from getting involved in research?
Without research we get nowhere.
I certainly gained.
I think Neil would be proud of both Claire and me.
Join in the conversation on Twitter with @ReaDySpeech @francefold @CochraneUK #LifeAfterStroke or leave a comment on the blog.
Claire Mitchell is a speech and language therapist at the University of Manchester, Manchester Academic Health Science Centre. Claire Mitchell is currently chief investigator of the ‘ReaDySpeech for people with dysarthria after stroke: a feasibility study’ which is a randomised controlled trialA trial in which the people taking part are randomly divided into groups. A group (the intervention group) is given the intervention being tested (for example a drug, surgery, or exercise) and compared with a group which does not receive the intervention (the control group). being carried out as a multi-centre trialA trial conducted at several geographical sites. Trials are sometimes conducted among several collaborating institutions, rather than at a single institution - particularly when very large numbers of participants are needed. in the North West of England. She is interested in finding out whether we can use technology to support speech rehabilitation following stroke and if it benefits patients
This research was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Greater Manchester (NIHR CLAHRC Greater Manchester). The views expressed in this article are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Annette’s biography appears below.
Claire Mitchell and Annette Dancer have nothing to disclose.
[…] Living with dysarthria – Claire’s story […]
Great to see such a collaboration. It is too often that the time consumed by research is not valued, here it is by all those involved. I am helping with dementia research by participating in a programme which I feel is vital to the better understanding of this complex condition. I am given hope to see people like Annette willing to take that step to create a better space for themselves and ultimately others by giving of herself in this manner. I just want to say, well done both of you.
Thank you for your reply Georgina, and it’s good to hear that you are helping with research too. The next blog in this series, out today, also features research in which contributions by people living with the effects of a condition (stroke, in this instance) is making a difference. I hope reading blogs like these will help others feel encouraged to get involved.
Thank you, Georgina, very much. Speaking as a patient I am humbled by the dedication and perseverance of all you academics and medical types who choose to specialise in and research our less sexy conditions. It’s an honour to feel my input has a place in research.
Dear Georgina, it is great to read your comments, to hear of your contribution to dementia research & your belief in the value of this time commitment. Thank you. Audrey