Knowing that cystic fibrosis is going to appear in a TV drama can bring on mixed emotions when you live with cystic fibrosis. Delight that CF is going to have a spotlight shined on it, coupled with worry about how it will be portrayed. Pleased that people will want to have discussions with you about it, but loathe to spend hours explaining something that isn’t quite right or is a bit more complicated than the TV version portrayal.
Since August, BBC 1’s weekly drama ‘Casualty,’ which reaches a weekly audience of almost 5 million people across the UK, has featured a recurring storyline with a young woman with cystic fibrosis (CF) called Effie. Effie’s story has involved clinical trials, haemoptysis (coughing up blood) and the challenges of managing cross-infection. While Effie’s character has helped to bring attention to CF in the mainstream and has enabled the Cystic Fibrosis Trust to promote the importance of clinical trials, artistic license sometimes won out. Here we cover some of the questions and issues raised by you, the CF community, over the last two months on social media, and ponder the question, is all awareness good awareness?
What’s the verdict?
We asked you on Facebook whether you thought Casualty had helped to educate or make people more aware of cystic fibrosis, and look for more information on the condition. The results are in…
This suggests that most of you, like me, felt that Casualty has helped to make people more aware of the condition, and the numbers say the same. We saw an almost 20% rise in visits to our web page that explains what cystic fibrosis is while Casualty was on TV. And when it comes to Casualty’s loyal audience, on the first day Effie appeared in the show we saw a 60% jump in the number of people looking up cystic fibrosis on search engines.
But discussions of awareness raise the age-old question: is all awareness good awareness? Many people who tuned into Casualty felt that any awareness of cystic fibrosis was a good thing, as it would help to draw more focus onto a condition that they or their loved ones struggle with. “I have a brother with the illness, he’s 36 years [so] this is great more people need to be aware of the illness,” one viewer said.
Others hoped that the show would “get the word out” and encourage people to find out more about CF in their own time: “They can educate themselves and others to spread the word in order to educate and learn what it’s all about. Awareness is key to remove the social barriers of health awareness and teach the society just a little of what is going on for people who have CF.”
Despite some considering Effie a “2D character” that they found it hard to relate to, they still felt that it was “good to see CF name checked on tv”.
Effie might be a fictional character, but there are over 10,500 people with CF living in the UK today. When asked how well the show represented the reality of CF, answers were split.
One person praised the show for having Effie pursue her “wishes and desires” despite her “poor health”. However, other viewers felt the show was poorly researched, especially when it came to clinical trials. From the way Effie got herself on to the trial to the dramatic events that took place during it, this was a plotline that many viewers found distractingly inaccurate.
One commenter said: “I was excited by the idea of CF being portrayed in the programme, and I do think that anything that raises awareness is good. However the whole getting in a trial via A&E, with the doctor lying etc wasn’t helpful!”
Someone else pointed out that, “Getting on a trial isn't something a&e would be remotely involved with.”
Despite these inaccuracies, the focus on clinical trials has helped us to draw attention to the vital role trials play in getting life-changing treatments into the hands of people with cystic fibrosis. Over the course of Effie’s storyline, we saw an incredible 75% increase in visits to our clinical trials pages compared to earlier in the year, and when Effie’s storyline reached its climax in October, we saw 10 times more sign ups to our clinical trials newsletter than in the previous month. The newsletter helps people with CF and their families to get the latest on the trials taking place and which ones they might want to take part in.
From the first episode, Effie’s character was said to have 20% lung capacity, but many viewers were distracted by the fact that she was able to walk around, didn’t seem out of breath and was able to live an apparently ‘normal’ life.
One individual said: “I think for making people aware of CF it has been good. But they could of researched cf's with that lung volume properly. Before transplant I was less than 20% more like 15-10. I was managing to still do stuff but on oxygen 24/7 … The strain visible on your neck and upper body surely wouldn't be that hard to act, and blue lips and finger nails (make up) wouldn't be hard to do either.”
Another person felt that the focus was more on the relationship between Effie and Ethan than with her condition: “Yes I get it has to be dramatised for the programme, but it’s not helping people genuinely understand what the condition actually is and what it’s about as all the drama surrounding her and Ethan is being made the focus point. As a person with CF it’s frustrating to watch as they’ve such a good platform to raise awareness yet the public are being shown stuff that would never happen in a million years in CF clinics.”
Too close to home
Some viewers felt that Effie’s storyline has done more harm than good as it suggested that the health issues people with CF face aren’t that serious:
“If I knew nothing about CF I’d be asking why anyone is bothered about losing their lung function when you can still easily carry on regardless with 20%.”
Others understandably chose not to watch the show, aware that the content might be too upsetting: “My daughter is only 13 months old and we are still learning about CF. We have chosen not to watch the storyline mainly as the future with CF is scary and we decided a while ago that we would only focus on our daughter’s CF, and try not to listen to others’ stories.”
One person decided that the realities of living with CF provided enough insight into the condition: “Don’t watch casualty, I spend too much time in hospitals to spend time outside of them watching fictional ones.”
Cross about cross-infection
One of the most unique things about CF is the issue of cross-infection, where people with the condition shouldn’t meet to avoid spreading dangerous bugs. This was represented in Casualty when a number people with CF were admitted to A&E when they became ill with Legionnaire’s disease. One viewer pointed out that cross-infection, and the risks of picking up infections from the environment, are underrepresented issues that are misunderstood by many:
“This isn’t publicised enough, but it’s also so complicated I’m not sure if properly can be. We need to find a message that everyone can understand. “It’s just a cold to you, it’s 3 weeks in hospital for me” works as it’s understandable. Bugs going from CF to CF because our chests are weaker and some bugs are worse for us than others, is a harder message. And people with CF having to say “if you have CF and you see me out and about, please stay away” sounds rude, even though we don’t mean it like that … Cross infection makes me cross.”
A doctor’s perspective
Finally, a real-life medical professional gave their thoughts on the show.
“I’m in two minds whether to watch or not! I work on a paediatric ward that specialises in respiratory illnesses. We have young people with cystic fibrosis being admitted for 2 weeks every 4 weeks. The public have no idea what CF is let alone the impact it has on their lives. We are unfortunately fighting a constant battle to get more funding for these young people to offer them better services and better facilities while in hospital.”
They had only praise for the young people on their ward: “They are the most resilient and tolerant young people out there who never complain about the plain 4 walls, rubbish WiFi, no remote for the tv, rubbish hospital food, professionals constantly coming in with gowns and gloves on and hooked up to medication 4 times a day. It’s really really rubbish and I wish nothing more for it to get the same recognition and support that other illnesses get. It’s really good the BBC are covering it, I just cringe when the portray is so different to real life.”