NHS boot camp breathes new life into cystic fibrosis
4 November 2013
A CAR mechanic born with a life-shortening inherited disease affecting the lungs and digestive system has been given a new lease of life thanks to a motivational boot camp set up by Sheffield Teaching Hospitals NHS Foundation Trust.
Jason Stanley, 40, of Rotherham says the intensive coaching led by a specialist cystic fibrosis physiotherapist and dietician at the Northern General Hospital has enabled him to learn from his mistakes and better fight infections.
Over 9,000 people in the UK suffer with cystic fibrosis – an incurable disease which can be managed through physiotherapy, exercise, medication and nutrition. The illness is diagnosed in every 2,500 newborn babies, with 1 in 25 carrying the hereditary gene.
With support from a team of physiotherapists, nurses, doctors and dieticians trained to use motivational interviewing techniques to encourage automatic behaviours, Jason has regained fitness, improved lung function and returned to a healthy weight for his height and size. He has also been taking all his treatment for the past 12 months using a state-of-the-art device called the ‘I-Neb’. This has supported him to change his behaviour through a chip in the device which enables physiotherapy technical instructor Charlotte Hinchliffe to share online feedback about Jason’s habits to him, in turn motivating him to change his behaviour.
Cystic fibrosis sufferers who have normal body weight can much better manage their illness as being underweight increases the chances of chest problems as the body doesn’t produce enough enzymes to store fat.
Jason Stanley, a qualified mechanic who owns two car garages in Rotherham, said: “I have to take 32 tablets in the morning, seven before every meal. When I first joined the boot camp I wasn’t taking my medications as I had to use a nebuliser, a powerful aerosol inhaler that allows me to breathe the antibiotic drugs directly into my lungs, and it was all too much for me. Even if I just missed taking one tablet or nebulised antibiotic I knew I would start feeling sick and nauseous, but I just didn’t have anyone to talk to when I was feeling down. The boot camp helped me stay with my achievements and try out different things, so if one thing didn’t work I knew what a big mistake it was not taking my medication.”
Charlotte Rose, a cystic fibrosis clinical specialist physiotherapist at Sheffield Teaching Hospitals NHS Foundation Trust, said: “Cystic fibrosis is one of the most common genetic disorders in the UK, and life for people living with the disease can be very challenging. The good news is that there are some fantastic treatments available, but sufferers often struggle to regularly take their treatment just like the rest of us struggle to get to the gym. As a cystic fibrosis team we have recognised that it is crucial that we learn how to support people to take their treatment.
“Despite this there is a lot of hope in this illness, and breakthroughs in research mean we’re optimistic that in 15 years time we may be close to finding a cure. So the battle of hope is an important battle, and one that we want to keep alive through our boot camp. I’d like to think joining the boot camp is a bit like joining a gym – there may be many short-term inconveniences, but the overall long-term benefits to sufferers are enormous, and our job is to motivate people to see their illness as a marathon not a sprint and change mindsets.”
Further information about cystic fibrosis can be found at https://www.cysticfibrosis.org.uk/.
ENDS
MEDIA CONTACT:
Claudia Blake, Research and Innovation Communications Officer
Tel: 0114 226 5033
Email: claudia.blake@sth.nhs.uk
