Cystic fibrosis (CF) is an inherited disease where thick sticky mucus is produced in the lungs making it difficult to breathe. It can also affect the pancreas, the liver, reproductive organs, sweat glands, the nose and sinuses, and while there is no cure for the disease, treatments are available to help manage it.
Royal Brompton Hospital is a leading centre for the care of children and adults with CF and its expert teams have been responsible for many breakthroughs in research and treatments for the condition. The specialist CF team is made up of many different professionals including consultants, clinical nurse specialists, physiotherapists, dietitians and psychologists, who provide a comprehensive (holistic) approach to CF care. This includes the Vocal Beats programme, where young people are offered singing and music lessons that can help with breathing techniques, as well as improve the mental wellbeing of patients.
CF patient, Eleanor Smith (23), is a Vocal Beats Ambassador. For Cystic Fibrosis Week 2021, Eleanor explains why she joined the Vocal Beats programme, what it is like living with CF and how she met and interviewed BBC Radio 1 presenter, Katie Thisleton, for YouTube channel Vocal Beats Online.
Why did you decide to become a Vocal Beats Ambassador?
I spend a lot of time in and out of hospital, so I knew about the 121 Singing For Breathing sessions run by Heather McClelland for patients with chronic obstructive pulmonary disease (COPD). So, when a new project aimed at young people was starting, she recommended me to be one of the youth ambassadors for it. It seemed very interesting and I thought it would be quite nice to do something because of CF that wasn’t going to hospital or having treatment and blood tests.
How does music and singing help you?
I think it’s different for me because I am deaf so music isn’t something I purposely seek out, but I do enjoy it and I have positive memories of it from my childhood when I could still hear. I suppose it gives me something to think about that isn’t CF or my next hospital appointment, which is good, and that improves my mental health. You don’t have to be knowledgeable about music to enjoy it.
What is it like living with CF?
That is actually difficult to answer, because for me it’s just my life. It’s a bit weird to imagine what it would be like not living with CF. I did have some denial growing up, I spent a lot of my childhood pretending that I didn’t have CF. But once I came to terms with it things got better.
Why did you interview Katie Thisleton?
Well Katie hosted a CF conference back in 2019. I couldn’t go because I was in hospital having treatment, but my mum went and approached her knowing that Vocal Beats were setting up a video channel and looking for inspiring people to interview. There were some delays due to Covid-19 but we finally did the interview a few weeks ago, which was really exciting as Katie does a lot of work with young people and around mental health – she is really motivational.
What was it like interviewing Katie Thisleton?
I was quite nervous, I think, because I’ve never interviewed anyone before. There’s also the fact that I wanted it to go well and I’m a bit of a perfectionist – this isn’t a job interview, so I don’t mind using that cliché. I am also autistic so communicating with people can be tricky sometimes. It can feel like I’m Wallace from the episode of Wallace and Gromit where he puts on the wrong trousers. But I spent a long time researching and preparing my questions, and she said she hadn’t been asked some of them before which I think is good – I even asked her a mystery bonus question! Ultimately, it went quite well.
Watch the full interview between Eleanor and Katie to find out what the bonus mystery question was.
Eleanor has big ambitions for the Vocal Beats Ambassador programme and is hoping her next interview will be with comedian, James Acaster, who took part in Hundred Hearts – a fundraiser organised by Royal Brompton & Harefield Hospitals Charity in 2019. Vocal Beats is funded by Youth Music, the Coop Foundation’s Building Connections Fund Youth Strand, The Brompton Fountain charity and The Royal Marsden Cancer Charity at The Royal Marsden NHS Foundation Trust.