Pamela Scarborough is a cystic fibrosis specialist who is a committed campaigner for more people to become organ donors.
Tell us about your job
After more than a decade specialising in the NHS I am now a self-employed physiotherapist and yoga teacher for people with cystic fibrosis (CF). As well as seeing patients privately I educate health professionals and yoga teachers on the potential role of yoga in respiratory conditions. I am at the initial stages of two research projects: one evaluating the benefits of a new online social fitness platform and the other researching the benefits of yoga. Both studies are in adults with CF. Being self-employed has allowed me to focus on the areas I am most passionate about as well as to work flexibly around my young family.
What drew you to the CF field?
My first experience in CF was in my first student placement when I was involved in the care of a 16 year-old-girl who was dying. I was struck by the physiotherapist’s role at this important time – easing her breathing, making her comfortable, physically and emotionally supporting her and her family. It was obvious that the girl and her family had a lot of trust in her CF team.
Now you rarely see a child so sick with CF. Developments in care mean that people with CF are living longer, though with that comes many bio-psychosocial challenges. The job is more than airway clearance, it uses exercise and musculoskeletal techniques as well as inhalation therapies, ventilation strategies and breathing re-education. Importantly, it’s about facilitating improved adherence to therapies and empowering people to live the lives they want.
What motivates you in your work?
The most important thing is helping people to live (and die when the time comes) with ease. This means addressing physical and emotional health alongside one another (that’s why I like yoga), and thinking of new ways to improve the quality and delivery of care to an individual in a changing world.
Tell is about the Ashley Moore campaign
I went to university with Ashley’s husband and was already specialising in CF when they met. Ashley is an amazing woman and a close friend who has CF and fundraises for it. As her health deteriorated she started to face the very real fears of needing a transplant and dying, and her focus understandably shifted to the sad reality that one person with CF in three dies waiting for a lung transplant. As a physiotherapist, I had already seen too many patients die waiting so when Ashley said she wanted to start a campaign to raise awareness about the importance of organ donation we immediately got to work. I have found myself in new roles managing a social media campaign on Twitter and Facebook, liaising with the Cystic Fibrosis Trust and NHS Blood and Transplant on strategy, communicating with the press, and, of course, updating people on Ashley’s progress. Her journey highlights the reality of being on the transplant list and recovery after surgery.
Why should we be organ donors?
Three people die a day waiting for a transplant. You are more likely to need a transplant than to be an organ donor. If you would expect your or your loved one’s life to be saved by a donor then you should be willing to be a donor yourself. You can save the lives of up to six people when you die. Arguably, more important than becoming a registered organ donor is telling your loved ones your wishes. Even if you are a registered organ donor your family can override your wishes at the time of death.
Are you a social media fan?
Since becoming self-employed Twitter has become a lifeline. Observing what articles are trending, what themes are coming up at conferences and what patients are saying has really helped me to stay connected with both the physio and CF community. It has connected me with researchers, CF/yoga practitioners, new businesses and clients who I am working with and learning from. The support for Ashley’s campaign on Twitter and Facebook has been phenomenal. Our Facebook page has a reach of 900,000 but on Twitter we have reached millions, with Piers Morgan, Audley Harrison and Kevin Pietersen tweeting the #HopeForMoore message: more organ donors = more lives saved. fl
- Pamela Scarborough is a self-employed physiotherapist and yoga teacher
- Pamela’s Twitter handle @Yoga4CF
- Ashley’s #HopeForMoore campaign
- Facebook Ashley’s Next Breath
- Twitter @sayidonate
- Go to www.organdonation.nhs.uk to register, then have the conversation!
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