3 ways to ensure patient voices are heard in a communications programme.
It began in 1980 but never took off until the 1990s when an American journalist at NewsWeek1 penned a piece that used the term ‘yuppie flu’. The label unintentionally shaped the way the world and medics viewed a health condition, that health condition was chronic fatigue syndrome or Myalgic encephalomyelitis. (ME) Even to this date, the illness carries so much controversy that it would give Jeremy Clarkson a run for his money. I am Ev, Senior Account Manager here at Curious Health and I have lived with ME for six years; I believe that as communicators we have a duty to ensure the language we use, does justice for any patient group not for today but for tomorrow too.
How did it start and unfold for me?
For up to a year, I knew something wasn’t right with my body; the fatigue, the inconsistent food intolerances, the memory loss, and the brain fog all felt bizarre. I visited my GP who suggested I have blood tests, which highlighted a B12 deficiency. For some chronic health conditions, they remit relapse, meaning some patients have months and sometimes years without their symptoms flaring, making their onset much tougher to swallow. This was the exact case for me. A year went by before similar symptoms reappeared; I had now reached a point where I was barely functioning. So, I returned to my GP, with worsening symptoms alongside neuropathic pain and an inability to walk let alone cognitively function without assistance from a parent. With my symptoms, no longer invisible, my GP referred me to a neurologist who would be better equipped to address the situation. Education around any invisible illness is poor, despite 1 in 7 of us living with a disability. It is estimated that over 1 billion people live with an invisible disability.2
In the time between the referral and appointment, I found conversing with friends and family to leave me feeling as though I’d competed in marathons. On some days, I would find myself bed-bound, struggling to tolerate the light from curtains and the sounds coming from my television. Although my symptoms became significantly worse, my physical appearance didn’t change leaving me open to interrogation from those who wanted to know why I could go for a coffee but struggle to attend a meeting or gentle walk. During this time, I thought it would be short-lived, but it wasn’t, and I found myself signed off work for six months; after having multiple tests I was diagnosed with chronic fatigue syndrome with no treatment available other than cognitive behavioural therapy and exercise. Two treatments that have been withdrawn from the NICE guideline on treating people with ME.
What is ME/CFS?
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is fatigue, cognitive impairment, problems sleeping, a post-exertional malaise which often looks like a person taking longer to recover from any form of activity. In the UK, up to 250,000 have ME with the majority being female.3
The impact of language
The interaction I had with my neurologist has always left me with a sour taste in my mouth and to this day I have never forgotten how she communicated with me. As she concluded our appointment she asked, “what do you expect from me now?” We expect our healthcare professionals to be seasoned communicators because they interact with hundreds of patients all with lived experiences. Yet, many find that the language health professionals use is sometimes not as compassionate as first thought.
Whilst producing this post, I came across a story that had ‘proof chronic fatigue is a real illness’ as the headline. You might think this is a headline from the 90s, it was in fact, published in 2016. So, is it any wonder my neurologist felt mental health support was my only option?’ The assumptions made around the illness are not isolated within the health system, in fact, I received comments from colleagues, friends and family saying that ‘if I thought differently, I could cure my fatigue’. At this point, language has a part to play, because crucially patients presenting physical symptoms are desperately wanting validation in their experience and symptoms. When creating communication programmes, it is imperative that we hear how the patients feel their illness is presented – a social listening exercise can be crucial in identifying the possible challenges patients face and what needs to be carefully and sensitively executed during the communication programme.
The history of the condition became a scene-setter for the healthcare community. With there being such limited understanding around the condition, doctors are left with a gap in their knowledge. A diagnosis of ME to most healthcare professionals is a way of labelling a collection of symptoms. A health professional I had the pleasure said, ‘you had all the symptoms of another disease but your tests were normal so you were given ME so you could leave his room with a label, because we know a label of any kind might bring you comfort.’ With there being such limited understanding in and out of the health system – health professionals find themselves having awkward conversations which lack empathy and compassion for the person living that experience. A prime example showing the way language shapes the way our health professionals view and interact with their patients who present a condition that is out of their knowledge base– their understanding of a condition diluted any sensitivity and empathy.
Finding my voice
When I realised that ME was such a misunderstood condition, I began to challenge and attempt to re-educate my healthcare team. Most recently, I was told by a very reputable upstanding professional to think positively and perhaps distract myself from the chronic pain I had been experiencing. Chronic pain, is similar to ME where misconceptions around the topic have left professionals clutching at straws often directing the patient to mental health services. I asked him to clarify how he saw me distracting myself and whether he could point me in the direction of a research paper he had written about distraction and chronic pain. At the same appointment, I asked him to refrain from using ‘chronic fatigue syndrome’ signposting him to the movements ME charities, government bodies and NICE had made in challenging stereotypes, representation and resources around the disease. This was not only empowering for me as a patient but as a communicator because I had identified the power of a patient voice in this type of interaction. In the six years I’ve lived with the condition, my health professionals have always refused to write ME claiming it wasn’t real or not a medical diagnosis, two weeks after this appointment my letter represented not only the conversation, but had ME. A milestone for my voice and I; one that few people with ME receive in writing.
How can we ensure patient voices are heard effectively and accurately in my communications programme?
1. Connect with the patient group.
We as a healthcare PR agency recognise that budgets are constrained more than ever before – you are looking for creative impactful and budget effective activities. Connecting with patient groups has never been easier with social media giving thousands a voice to share their experiences; some charities even facilitating these conversations to inform some of their strategic milestones. For example, #pwme is a hashtag used for people with ME to discuss candidly, their experiences of living with the condition. Patients can share their experiences free of charge. Through social media listening tools, we can now capture patient sentiment, in a real-world digital environment, in a way that was not previously accessible. Learnings that can inform a patient-centred content strategy.
2. Develop a strong portfolio of patient perspectives.
Connecting and identifying patient groups, is the first piece in the puzzle. But how do we maximise this as part of our PR activities? Case studies are crucial for ensuring patient voices are heard. If we refer to people with ME; it would be useful to capture case studies that represent a range of experiences whether that be through their interaction with a health professional to the impact their ME had on their education and employment. Often, people living with long-term health conditions will want to share their stories in the hope of raising awareness or preventing their experience from being replicated in the future.
3. Identify the patient advocacy group & develop the relationship.
It is reported that The World Health Organisation has access to over 1,000 patient support organisations in the UK.4 The number and accessibility of these organisations is set to increase, with the value and support becoming fundamental. Patients take advantage of the signposting to resources and a holistic understanding of their needs and concerns. Advocacy groups will also have access to data to support some of the themes identified as well as highlight issues that were not present via social media.
The final word
The emergence of social media has made patient experiences readily available whether that be via patient advocacy groups or through social media itself. As communicators we have a duty to ensure the language we use, does justice for any patient group not for today but for tomorrow too. If you’re looking for ways to make more impact and use patient experiences to inform your communications programme, we’d love to help. Drop us a line at – firstname.lastname@example.org