This week I am thrilled to kick off the social spotlight interview series again with one of my favourite people – Jo Taylor. Founder of After Breast Cancer Diagnosis, Jo is a straight-talking Northerner and a force of nature. A fearless patient advocate and campaigner living with secondary breast cancer, she inspires me every day with her energy and passion.
Jo, I am in awe of the work you do. I know you have several projects on the go, so can you tell us a little about some that are close to your heart right now?
JT: Currently I’m working on my #abcdretreat . I held 3 this year and the plan is to get sustainable funding that can support 5 residential a year and other additional ones but not redirecting. I want to be able to franchise the model as people have now asked my advice in replicating. I know it works and I can inject the right ideas and know how into producing them in different areas.
A lady from the last retreat wants the franchise in the Isle of Wight! I’ve also had interest from America and Canada. Social media reaches the places others can’t. It’s unbelievable how it’s grown in the last 2 years. I did a pilot 2 years ago with 9 breast cancer people. I now know how it works best and people gain so much out of it! There’s lots of ideas but can’t say too much at the moment. A business plan is in the process and there are two other grant funds that again I can’t talk about that I’ve applied for. Only time will tell if these things work out. Fingers crossed.
I’m also involved in the #busylivingwithmets campaign that started last month in Breast Cancer Awareness Month. While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist. A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined. Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.
NICE, NHS, charities there’s so much not happening and it should be. Secondary breast cancer patients need a real voice to push policy and make changes – patients need early diagnosis of mets, better treatments and surgeries. If the government really want the life expectancy to improve and the U.K. world cancer ranking to improve from 17th position, these are the things that are needed to make this happen.
I also am the founder of METUPUK who are looking at the aims and objectives detailed in the graphic below, and we’re committed to turning metastatic (secondary) breast cancer into a chronic disease instead of a terminal disease.
I’m also involved in steering groups for Experimental Cancer Medicine Centre (ECMC) in Greater Manchester and in the Greater Manchester User Involvement programme working in partnership with clinical groups and boards like the Greater Manchester Breast Pathway Board which I attend as Secondary Breast Cancer patient representative.
I truly am in awe of all that you do Jo! So, tell us what role social media plays in all of this work. How did you get started with social media?
JT: All these things use social media to push their profile. I was on Twitter with my own personal account and wanted to see how Twitter worked and how I could use it after creating my website After Breast Cancer Diagnosis – I spent a good year or so researching and understanding how it worked to be able to replicate this with my @abcdiagnosis Twitter account. I didn’t want to just take followers over from a personal account. Many did follow me from my personal account but it grew from there to what it is today.
Which platform(s) do you enjoy using the most?
JT: I use Twitter as my main platform. I have a Facebook page as well which I then expand on the information from Twitter as FB is wordier. I don’t link one media to the other as I feel it doesn’t work for me. I don’t use Instagram as I don’t feel this is a worthwhile medium for abcd. I find it unrealistic and more of a “celebrity” medium that just isn’t what I want to promote. Life isn’t all about the perfect photo and I am a real person not a posed and promoted one. I also feel this is damaging to people and our children. I don’t feel my “brand” is right on that medium.
I agree that Instagram is all about the filters and the projection of a perfect image, but I wonder if it might be worth experimenting a little to see if you could do something to shake this up? We should put our heads together sometime and see what we can come up with 😉
I ask all my guests the following question – but I probably should know the answer to the next question already. Which topics interest you – eg do you take part in any particular twitter chats?
JT: Any topics to do with breast cancer, secondary BC, patient involvement, advocacy interest me. I’m also massively interested in exercise with and after cancer so get involved in things to do with these subjects. I want to make a difference for other patients and people living with and beyond cancer. Exercise is something we can all do and at very little cost so I like to motivate people to do this.
I have a closed FB group for people who have been on the retreats and it’s great for them to keep motivated. We also have WhatsApp groups that keep them motivated and connected.
What advice would you give someone just starting out on social media?
JT: Connecting with people and actually chat with them! This is the one thing people don’t always do, they think they will just get followers by no interaction, I’ve seen it. You have to be part of the conversation, don’t be shy, talk, get involved, do Twitter chats, lurk until you feel comfortable in speaking but we all have an opinion and that’s the thing, we don’t have to agree. Don’t feel silly to stick your head above the parapet and have an opinion. Be kind – many people have cancer and sometimes things can be taken incorrectly too (Maybe my Northernness?!) I’ve been on the receiving end and sometimes easy to be misunderstood. Don’t feel silly to say I’m sorry I didn’t mean it that way also, I still can say something and the meaning isn’t taken in the right context. If something happens DM someone and there’s been times I’ve apologised or smoothed things over. Interaction is everything though, it’s just like speaking to someone face to face. Remember don’t say something to someone you wouldn’t face to face. There are real people behind these accounts (most of the time). Block anyone who is continually rude or upsetting. I’ve only had to block three people ever in the last 6 years and most of the time I’ve had only a good experience of social media.
I love that advice Jo, and I agree that is easy for misunderstandings to arise online. I appreciate that you care enough to smooth things over. It’s important that we build and nurture those online relationships we value too.
So, finally, would you like to share a favourite quote with us?
Favourite quote – too many to choose from but this resonates – no, exercise won’t cure clinical depression but whatever disease or problem, it certainly can make you feel a whole lot better if you try it.
That’s a powerful note to end on Jo, and as healthcare communicators, we both understand the value of a visual to get a key point across!
This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.