When Patient Advocacy Isn’t All Good

Many of us embark on this crazy path of patient advocacy by accident. For some, we stumble into the spotlight with a news story or social media post that goes far beyond our intended audience. For others, a voluntary role becomes something more serious when you see shoes that must be filled. Whatever our path to get here, I’d be very confident in suggesting that we all share one thing in common – that we advocate for doing good and making the world a better place.

So what happens when those good intentions get abused? When your willingness to help leaves you with the realization that you have been taken advantage of? In this article, I will share just one upsetting personal example out of, unfortunately, several such instances, how this made me feel and what I now do to protect myself.

Did I plan to become and advocate?

I never set out to be an advocate. I never thought I would speak on stage, travel the world to raise awareness, or win awards – and I certainly never thought I would be here writing to you good people. The thought of such things never crossed my mind, and sometimes, I do these things, and it still doesn’t feel like it happened to me.

How did it happen?

I became a patient advocate by accident. I was in a desperately dark place in 2019, but ultimately, as my mental health got dangerously poor from depression caused by a flare and loss of mobility at the same time as I became a dad, my wife and doctor convinced me to start writing about my situation. It helped me process what was happening to me and, in a moment of sheer stupidity (or bravery, depending on who you ask!), I made my blog public, and four years later, here I am - although the blog didn’t survive, ironically.

What was my goal?

I wanted to help people. I wanted to stop others from going through what I did, and as more and more people approached me about my story, I said yes to everything, only thinking about reaching as many people as possible. Local and national news coverage followed, requests to be in charity national advertising campaigns, talk at conferences, write freelance – the list continues. It was a blur. But I thought all advocacy work was good advocacy work.

I was wrong.

When did I know I was taken advantage of?

The moment I realized I had been taken advantage of came years after it first happened, and it still makes me feel a little embarrassed to think about it now.

I was asked to be in a documentary filmed in London – the usual drill of me as the patient sharing their story for another project I didn’t have complete visibility of. I had done many of these and didn’t think much of it until my son started school, and suddenly, I didn’t have weeks of annual leave to use on my advocacy work. In the year prior, I had spent all but one week of my leave entitlement on advocacy, with my family having just a precious few days with me present that entire year.

What was off about the project?

As the filming date approached, I was bothered by the fact that I had booked a day off work (unpaid), had no schedule, no confirmation of how my travel would be reimbursed or any contract. I didn’t even have the location of the filming or details of what was happening with the end product. So, I started asking more questions.

I was shocked to discover that there was no compensation for my time or expenses and that I was expected to do this as a ‘volunteer’ even though I had been addressed as their ‘Patient Expert’ prior to that. Worse, the film was to be used at a medical professional conference, but nobody with lived experience would be in attendance to present it. When I offered my services to do this, I was informed ‘patients weren’t permitted.’ I realized I was their tickbox, and worse, I was expected to do it all for free; no, at a loss, when you add up the lost income in wages for that day, the £100+ train tickets and childcare.

How did I pivot?

Being typically British and not wanting to let people down, I politely informed them I wouldn’t be traveling and offered, as a goodwill gesture, to record a little video for them one evening if it helped ensure a patient voice remained.

A few weeks later, I was stunned once again when I saw splashed across social media, my image endorsing this project, a project that was intended for a private medical conference. I was named but not tagged, and I became the face of a project where the only person in the room who wasn’t paid was the one whose story was used as the centerpiece. It hurt me emotionally in a way that I hadn’t expected. I felt cheated and used.

What did I begin to realize?

Unfortunately, this dirty and sick feeling I had been left with was just the start because, from this experience, I started reviewing my previous work and what I found broke me.

I found national radio advert campaigns - award-winning campaigns - where every editor, audio engineer, marketing guy or other person I interacted with was paid except me. I found social media accounts with enormous followings using my quotes, words and images of me that I had never authorized or given permission to use. I found work I was genuinely passionate about being a part of being used for things far beyond the original scope I agreed to. Worse, I found a copycat Facebook account that used my words, my t-shirt designs, and my awareness project ideas as their own, and to this day, the platform still hasn’t removed them.

Was I credited for my work?

Of course, none of these things credited me, tagged me, or pointed people towards my work, website, or social media accounts. If a stranger happened to pass by, they would think I was their employee, ambassador, or a random guy off the street. I’m not even sure some of these projects helped us as patients achieve anything; given a tickbox inclusion of a patient means nothing without the context of our lived experience.

It made me question everything I had ever done and be angry at myself for always saying yes to help. But worst of all, it made me feel like my story, which was so personally and candidly mine, was no longer my own.

In my next article, I will explain how I bounced back from this, how I now only work on projects that I believe have a real-world impact and what I do now to place value on my lived experience.