Changing the Way We Communicate!
Last updated: October 2018
Many years ago if you were ill you visited your GP or doctor as the first point of call. Now the tables have turned. People read websites, consult friends & family & even search out groups & advice on social media before they decide to visit the doctor with a medical concern.
The popularity of online communication
Around 80% of the population of the US has a social media profile (source statista.com) & the UK shows similar statistics.
As a patient when I was first diagnosed I found the information given to me by the local hospital left a lot to be desired. I don’t blame the hospital. Melanoma is rare. There are roughly 16,000 new skin cancer diagnosis in the UK each year (but the rate is increasing). The UK population is over 65 million – so the chances of a GP or hospital with multiple Melanoma patients are relatively low. (source cancerresearchuk.org )
Therefore it was completely logical to me to turn online for information. Every website I read provided conflicting advice. Not just relating to the severity of my disease, but the treatment options that were available to me. The pathway to care is dramatically different in the UK to the US. Clinical trials across the world differ. I found myself confused & this exacerbated my fear & anxiety further. Who & what could I trust?
Blogging to connect and learn
I started blogging. I connected with patient groups online & advocacy groups internationally. It became clear very quickly that I wasn’t the only patient that faced a barrage of information at the very point when I was most vulnerable. My understanding level might have changed, but I am not medically trained. Most patients aren’t & our collective lack of medical knowledge to process this complex data in order to access the best choices is something of a challenge to Melanoma Advocates.
We want to arm patients with the right level of information. We want to ensure they can understand the intricacy & complexity of treating Melanoma. So whilst my personal goals remain to live well, to stay NED and to enjoy life with my family, my focus as an advocate has evolved.
I set up a national conference in the UK, which provides the very platform I felt I needed when I was first diagnosed. An open, impartial gathering of every stakeholder involved in Melanoma in the UK – from Patients & Carers, oncologists to nurses, Pharma & charity representatives. They come together meet, learn from each other, talk about key issues & take home both a heart filled with hope & newfound friendship but also a mind empowered with the right type of knowledge.
We film everything. We use social media channels to share openly. The patients are at the centre of every discussion. The conversation has changed & the message we are giving, loud & clear is that we want to be a partner in our treatment. We can learn & we want to learn…and as a community, we are invested in helping others that don’t know what we know.
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