#ECFS2018 – Free Exercise Program for CF Youth Gaining Support Across UK

#ECFS2018 – Free Exercise Program for CF Youth Gaining Support Across UK

Exercise clearly benefits kids with cystic fibrosis (CF), yet these children often lack the motivation to swim, run, box, play football or lift weights.

A British healthcare conglomerate says it has found a way to get these kids moving — at no cost to them or their families.

Nuffield Health, a not-for-profit healthcare organization, has run a cystic fibrosis exercise program for the past seven years. It’s been so successful that hospitals throughout the U.K. are now looking to adopt the program. Some already have; the program is offered by CF treatment teams at Leeds Children’s Hospital, Royal Brompton Hospital, Norfolk and Norwich University Hospitals, and Royal Berkshire NHS Foundation Trust.

Ashley Ahlquist
Ashley Ahlquist, director of Nuffield Health’s CF exercise program. (Photo by Larry Luxner)

“This began in 2011 because London’s Great Ormond Street Hospital (GOSH) had no space at all to deliver exercise programs to children with CF,” said Ashleigh Ahlquist, who’s part of Nuffield’s organization and social impact team. “So GOSH approached our gym and asked if they could use our space. That’s how it started.”

Ahlquist spoke to Cystic Fibrosis News Today at the 41st European Cystic Fibrosis Conference (ECFS) that recently took place in Belgrade, Serbia.

“There’s nothing else like this in the U.K., and I haven’t heard of anything like it in the world,” she said. “We are hoping to be able to publish our model to encourage other leisure centers to run our program.”

Since its inception, 220 children have participated in the program, which has expanded to 31 Nuffield gyms throughout England. Each site supports four to ten CF youths.

At GOSH, the program is estimated to have saved around £7,000 ($9,250) per patient each year when combined with standard physio care and dietetic advice, according to the 2013 study, “A pilot outreach physiotherapy and dietetic quality improvement initiative reduces IV antibiotic requirements in children with moderate-severe cystic fibrosis.” The work was published in the Journal of Cystic Fibrosis.

One-on-one training sessions run 45 minutes to an hour, and Nuffield offers one free session a week, every week, until a CF child turns 18. The program is tailored to each patient depending on health status, but exercises can include all those these children aren’t motivated to do: boxing, running, stretching, doing sit-ups and crunches. The intensity is adjusted, and consideration is given to how CF might affect a person’s recovery after exercise.

Benefits include the confidence needed for lifelong good exercise habits; improved physical fitness, strength and core stability; lesser time spent at hospitals; a slowing in loss of lung function; and more opportunity to engage in school and extracurricular activities.

Nuffield program earns widespread praise

An estimated 5,000 children and teens in the U.K. have CF. One is 17-year-old Beth Samsa, who is shown on the video working on boxing exercises at Nuffield’s St. Albans gym north of London.

“My lung function has stayed at a very high level, and has even sometimes improved,” she said. “I’m more confident in things that I’m doing even generally. I feel like because I’ve shown so much progress through the training that I can progress in everything else.”

The European Cystic Fibrosis Society singled out Nuffield for special recognition at its 2016 conference in Sevilla, Spain.

London physiotherapist Helen Douglas, BSc, MSc, also praised the Nuffield team for its high-quality service to her patients.

“By offering ‘normal’ exercise environments and professionals, Nuffield Health is facilitating exercise participation away from the clinical environment,” Douglas said. “Nuffield Health facilities are safe and supportive, and help families to develop an exercise routine right from diagnosis.”

By year’s end, Nuffield aims to have 112 sites across the U.K. running its program. It presently employs 210 people, including 163 personal trainers.

“We’re trying to keep it separate from clinical care, because in terms of engagement and encouraging children to exercise, these kids already have lots of drugs to take, and we want this program to be fun and exciting,” Ahlquist said, noting that “we have one lead physiotherapist who manages the program, and they refer people to us.”

Ahlquist, who also coaches triathlons, was a fitness quality leader before assuming her current position at Nuffield Health.

“This program was at the bottom of my list of priorities, but I love that it hugely benefits children and families, so I picked it up and ran with it — and did whatever I could to make it bigger and better,” she said. “Exercise can help lung function, it helps with quality of life, and it helps them stay out of the hospital and be happier.”

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