A digital nurse hired to combat ‘fake cancer news’ has revealed the heartbreaking reason why tackling misinformation online is so important.
Macmillan Cancer Support’s new digital nurse specialist Ellen McPake revealed to HuffPost UK that one man flew his sick wife abroad and paid thousands of pounds for a coffee enema treatment (where coffee is injected directly into the colon), which never worked. The man’s wife later died, leaving him distraught.
Ellen said the information, which was so readily available online, had not only impacted him financially but also psychologically. “He worried that he’d done more harm than good,” she explained.
Her role was created after Macmillan noticed cancer patients were coming away from appointments without the information they needed and were turning to unverified internet sites which left them ‘needlessly frightened’ and at risk of ‘bogus cures’.
In light of this we spoke to Ellen, who has more than 30 years of experience in oncology nursing, about what to expect from her new role and why it’s much-needed.
Why is the role important?
It’s a way of reaching lots of different people, more and more so in the digital era. There are a lot of people posting from their smartphones or computers and asking lots of questions, so it’s about having the facility to be there to answer those questions through a digital platform because some people aren’t comfortable picking up the phone.
What are the most common misconceptions around cancer?
There are quite a lot. For example, you can go onto the internet and put ‘cure for cancer’ and you’ll get results like ‘sodium bicarbonate cures breast cancer’ or ‘chemotherapy kills more people than it cures’. These aren’t verified sites and there is no evidence behind these statements.
One of the other common misconceptions is taking superfoods to cure cancer or coffee enemas. Some people travel to different countries to have coffee enemas and spend thousands of pounds on something that’s not evidence-based.
What’s the most dangerous and misleading information you’ve seen about cancer?
When I worked on the support line, I received a call from a man whose wife had died from cancer. He had read online that she could go to a clinic and get a coffee enema. His wife unfortunately passed away and he phoned the helpline one night because he was distraught that he had believed what he read.
He had gone away with his wife and spent thousands of pounds on this treatment, and at the end of the call he said he wished he had just spent the money on her bucket list instead. He said he felt he couldn’t go to his GP for support because he thought the GP would think he was silly.
He also worried that he’d done more harm than good to his wife. Psychologically that’s a big impact for a person, as well as financially.
Being diagnosed with cancer can be stressful and such a minefield – you get lots of conflicting information – but we want to provide trusted, reliable information so you can contact our nurses and be signposted to the right places.
When do you start?
I officially started at the end of August, but so far it’s just been an induction period. I’m now fully in the role. Over the last month I’ve been working closely with the Macmillan social media team and online support team. The benefits of this role, or the difference in this role, is that there’s a nurse from the nursing team working with the social media team and the Macmillan online community team – so it’s three teams working together to try and reach as many people who are affected by cancer.
What will the role involve?
I work solely online, teaming up with radiographers, dieticians and other healthcare professionals to coordinate answers to the questions that are sent to me (either through social media or the charity’s online community).
In October, there’s been a focus on breast cancer as it’s breast cancer awareness month, so I’ve done three live Q&A sessions on social media where people asked questions about breast cancer and I answered them. Next month the focus will turn to head and neck cancer, and pancreatic cancer.
There are over 30 nurses on the phone support line, who also do some online work, but I’m the only person who specialises in online support.
What are your main concerns about fake cancer news?
The biggest concern is that people believe what they read about cures and treatment online – and that it can do more harm than good.
For example, if you read that sodium bicarbonate can cure breast cancer and then you drink it, it might be harmful when taken in conjunction with any other medicines you might be taking. It’s also not taking into account how your kidneys or liver is functioning. It can be very harmful.
Where can people find trusted information?
The NHS Choices website, Macmillan and, of course, other dedicated cancer charities.
What should people do if they are diagnosed and come away from the consultation confused?
I think health professionals have a major role to play. For example, when I was a clinical nurse (I was a breast cancer specialist nurse for many years), I was aware that people were going to the internet after I spoke to them. As a health professional, I’d acknowledge that people were probably going to do that so I would signpost them to specific websites with trusted information.
The moment someone is diagnosed with cancer, their mind goes blank and they go away and speak to their family and friends, and everybody starts looking at the internet, where they then find conflicting information. If you do find conflicting information, we would always advise people to phone the specialist nurse who is looking after them and ask more questions. Alternatively, people can phone us or they can ask a nurse on the online community or through Facebook. We will always go through this information with people to break it down for them, but most importantly we would suggest questions that they might want to ask the doctor during their next visit so they’re better informed.