Finding your inspiration in the clinic – my experience of research

I’d like you to take a moment to think back to the last patient that you felt you treated well. That person who walked out of clinic with a smile and a better quality of life because of what you did. Now have a think about the patient that got away, the one that sticks out in your mind as an unresolved challenge. You may have seen them for months or just moments, but they stay with you. Mine was called Hannah*. She came into the room bent over, with small, shuffling, painful steps as if the sheer act of striding would break her. She sat down awkwardly with her hands clutched at her lower tummy and told me her story:

“It’s this pain, it’s just taken over everything….it burns inside…I can’t do anything with the kids, I can’t go anywhere because I don’t know if there’ll be a toilet…I have to go all the time or it’ll get even worse…it’s like I’m being stabbed up inside….it’s getting worse…I don’t understand because they did all the tests then told be nothing’s wrong, but it all feels wrong…he thinks I don’t love him, because, you know, we can’t do the things that couples should…it’s like razorblades…”

Now it may be that she caught me in a particularly empathetic mood, or that her search for answers, and more importantly for help, brought back my own experiences with the health system. But her story and her pain remained with me for a long time. As I tried my hardest to understand her symptoms and find ways to address treating her, I knew I truly didn’t understand her condition. So I began to read. I read everything I could access online about Bladder Pain Syndrome – or “Interstitial Cystitis” as it used to be known. The literature led me to places I hadn’t considered, gave me new viewpoints and angles. But I didn’t have the skills to effectively decide what was useful and what wasn’t, and it didn’t give me answers or practical steps I could take with Hannah to ease her suffering. And she was suffering.
The more I read, the more that pieces of the jigsaw were filled in – but it felt like the canvas was also expanding. I became engrossed in trying to understand how the underlying autonomic changes could create symptoms, or how adaptations of the microbiome could increase those symptoms. But I was still a long way from having any practical help for her. So I went on courses. I completed every pelvic pain course I could find over the next few years and my skills improved but I still had questions. I began my Master’s degree at Bradford University out of pure curiosity and a strong desire to better understand pelvic pain. I learnt many things over the following 3 years, and I’m going to share with you my research Journey.

Finding inspiration – your ‘why’ is more important than what

My research journey starts and ends with Hannah. Most of us will have a moment in our lives that we can pinpoint as when something happened or something changed – maybe when you met your life partner? Or when you took those first uncertain steps into the Dark Arts of Pelvic Health..? Unknowingly Hannah was a pivotal moment in my professional life. She started me on my current career path – to explore, understand and explain pelvic pain – and for now, pain related to the bladder. I’m very interested in why the bladder might hurt, or why the brain may consider it under threat – and therefore decide it hurts. I’m fascinated by the reason why the pelvic floor goes into spasm – why does any muscle go into spasm? Take a step back and really ask yourself – WHY? If we knew the reason why or the process why we may be able to prevent the cascade of steps that leads to pelvic floor muscle tension driving urgency, or vulvodynia. But most importantly, how we – the therapist and the patient – can change it.
And that’s the first thing I want to share with you, knowing why you want to explore something is much more important than knowing what you want to explore. My Why was that I wanted to have the knowledge and skills to be able to improve not just Hannah’s quality of life, but that of every patient with pelvic pain. And as my analytical brain developed through the Master’s degree process I wanted more specifically to know if there was a way that Hannah could treat or manage herself more effectively which was more realistic within my stretched NHS caseload. If you lack the inspiration to look at an area in detail then you’ll struggle with all the tiny, frustrating elements that make up good research practice. But if you keep sight of the bigger picture, your Why, your overarching reason for doing something, then it’s much easier.

Doing the process

The purpose of a Master’s degree is to do the process, it’s not necessarily about the outcome at all. I looked at therapeutic wand use in a small group of women with bladder pain syndrome. Half used the wand and half didn’t and everyone got weekly physio for six weeks – this also involved dietary advice and pelvic floor release work; these are amongst other things you’ll find in my article (Bond et al., 2017 – JPOGP 120). With 6 weeks of pelvic floor treatment and wand use everyone had improved, but the group using the wand had got better, faster. After 6 more weeks of no treatment the green control group had maintained their benefits – hooray! Physiotherapy works! It looks to have improved the symptoms of bladder pain syndrome and those improvements were maintained. But more importantly the group using the wand looked to have continued improving.
It took somewhere around 4 months to carry out the actual testing, but 10 months and over 40 thousand words of ethics paperwork to get there. That included getting a non-medic friend to translate my whole patient information booklet into Welsh – he told me he had to find new words that he’d never used before. There was also a great deal of “admin” to the testing process – calling consultant’s secretaries to check on potential participants, organising participants, working around the department’s needs to make sure I had a venue. I wasn’t expecting that. The sheer volume of preparatory paperwork you have to do can feel overwhelming, but the further along I got with it, the more I felt I truly understood my project. And it had simplified the question:

Does using a wand enhance physiotherapy treatment in women with BPS?

The process of repeating and refining and resubmitting forced me to improve the clarity of my work which in turn vastly improved the quality. In this sense – and for the right people, the MSc process does work. It makes better clinicians and better researchers by tasking them with thinking deeply about Why they’re doing something – and What they are doing.

Find your village

Something else I learned. It takes a village to complete research. The University is there for general guidance only, especially as a distance learner. The detailed and practical side of actually doing research is up to you. One of the most valuable things I’ve done was to develop my own network of local and international clinicians, researchers and editors. I got better and better at asking for help, and the people I asked knew people who also helped. And so my village grew.
People are vastly more generous with their time and their brains than I ever thought possible. I had help with statistics when my trial didn’t conform to the textbooks, with the convoluted 8-month ethics process that turned ‘IRAS’ into a swear word in my house, with understanding overarching research theory and with developing a sustained and strongly evidenced argument. Each person who challenged my reasoning and helped me to develop a more critical approach to the literature or to the methodology or to the trial or to analysing the results allowed me to become a more discerning and better-informed therapist. The most grounding influence of all was that of my two fellow MSc students. The best and most accurate information I got was from them – we were all deep into research theory but each of us looking at different areas. That made for a really fertile ground for learning and sharing. They were a huge support; text messages late at night on a Sunday meant they too were also sat in front of their laptop, not in bed before another busy week in clinic. I shared their highs and lows and am hugely proud of what they achieved.
There were some negative voices at work when I started the Master’s degree, and these easily disrupted my confidence and the momentum I needed to maintain through a long period of work. But the converse was also true. I didn’t ever expect that the Master’s would provide me with a group of professional mentors and friends I’m likely to have for life, but it has. Over the first two years there were around 20 physios based all over the UK and Ireland studying at Bradford who I keep in regular contact with, and another 15 or 20 people through my research year that have become friends. Now my clinical practice benefits from a wide array of international mentors, and I find myself having more informed debate online and listening critically to different views about the research and clinical experiences.
Having more informed clinicians engaging critically with each other and with the literature nationally and internationally can only enhance the profession. Finding your village needn’t be daunting, you can start by contacting your local hospital’s ethics team, or the library, or even talking on the POGP or Global Physiotherapy groups on Facebook like I did.

Learning to manage

It doesn’t really need saying that doing research requires commitment. I’ve already talked about knowing Why you’re doing research as being important, but without my interest and inspiration to explore pelvic pain I can’t imagine I would have managed the level of sacrifice demanded. I felt I was prepared but I really struggled. I worked fulltime and privately in my evenings through the first two years and spent all my weekends and evenings sat at my desk with curtains drawn, and lost a great deal of sleep. At the end of my second year I burned out, left the National Health Service and went part-time to be able to complete the research. The cost of the degree then escalated – I lost a third of my salary to gain my sanity.
The reality was that initially my time management and focus was poor. I could sit at the laptop and procrastinate for an hour or more before beginning, but again the process won. The requirement to sit down and get work done, to sacrifice social and family time has made me more structured and focussed in my work. I’m vastly more productive now than I used to be, which now allows me to balance my work, my private business and my teaching more equally with family time and relaxing. I needed to do it to learn it.

Finding more questions than answers

All along, I wanted real hard answers that I could use in the clinic. I wanted to know what I could do to get people better. And I wanted to understand Why what we do helps – why does reducing pelvic floor tension myalgia reduce urgency and frequency symptoms in BPS? But the reality of the timescale, the lack of previous work in the area and my lack of research experience meant that I had to pilot my study. You don’t get hard answers from pilots, but you do get even more interesting questions. In fact, a sign of good research is that you should get more questions than answers. And it’s a joy. Now I have so many more questions that I want to answer:

  • To what degree is using the wand therapeutic?
  • Wand use isn’t for everyone, what’s the lived experience of people we’re asking to use the wand?
  • Why does the pelvic floor reduce length and motility in pain states?

The reality is that if you really do want to find answers you’ll follow the research until you get there, which may take decades. But it starts with inspiration – and it can start in your clinic next week.

Research into practice

So how did the story end for Hannah? I managed to track her down after the study had finished and take her through a full 12 week treatment with a wand. I’m happy to say that she’s now managing her symptoms very well, with hardly any pain flares and a normal bladder function. It took me four years to get to the point where I had the beginning of an idea of how to treat her – which is what this is, just a beginning!
Working In bladder pain is truly exciting. We’re really at the forefront of pain science, and it’s ever evolving. Now I hope to share my learning with as many physios as I can, so that they don’t have to spend four years learning per patient, but use my learning as a springboard.
Doing research is not a process just for academics. Research is about asking and answering questions and exploring our work in ever wider contexts. Completing my research challenged me both professionally and personally. I had a huge sense of accomplishment when it finally came around to printing and submitting my dissertation in a way that I didn’t have with my undergraduate degree. I felt that I had, in a small way, added to the knowledge, understanding and treatment for a complex condition, and done so in a way that may practically help clinicians.
I also grew as a therapist. I used to feel nervous about my level of knowledge and skills but am now much more confident. Having embedded myself in the literature over that last four years, and having conducted my own research, I can now say with integrity that I am providing the best that I can for my patients with bladder pain. I’ve also challenged my own long-held perceptions and beliefs with surprising literature and found a level of motivation and drive within me I didn’t know I had. I’ve developed resilience and perseverance. These are all skills that have enormous carryover into normal life, but especially into our very wonderful work.
Have a think back to that patient, the one that got away. What one thing would you like to know that might have changed how you feel about that person, or how you may have treated them? Imagine how you could answer that question? The answer doesn’t have to be large. Some of the best research starts out small, in clinics. Yours could start on Monday morning. It just takes a question to answer, a pinch of inspiration and very, very sustained curiosity.