Living with a lung condition: treatments that don't use drugs
Drugs are not the only treatments available for patients with lung disease. Treatments that don’t use drugs, such as pulmonary rehabilitation, can make a huge difference.
We want more patients to be offered pulmonary rehabilitation, which is also known as PR. This is one of the most effective kinds of care for people living with lung disease, but it is not available in some parts of England. PR involves a physical exercise programme, tailored for each patient. It includes information on looking after your body and lungs, advice on managing symptoms, including feeling short of breath, nutrition suggestions and psychological support. Patients who smoke will also be given advice about how to stop.
A personal view: the benefits of pulmonary rehabilitation
Simon Pearce has a number of lung conditions, including COPD, asthma and bronchiectasis. He first heard about the benefits of pulmonary rehabilitation in 2013 when he attended a British Lung Foundation Breathe Easy group in Darlington and was keen to learn whether he would be eligible. However, it took another three years and two moves, first to Dartford, then to Enfield before he found a consultant willing to put him forward for PR. “I’m not sure why, but specialists didn’t want to talk to me about PR,” Simon says.
In 2017 Simon finally attended a PR course run by NHS physiotherapists at a leisure centre in Enfield over six weeks. “PR has helped me,” Simon says. “I have been able to do more, which has meant I can get out of the house more often. I still get out of breath, but I recover quicker.” He says that through PR he has learned more about how to manage his health and he has not been admitted to hospital for more than a year. Simon’s GP in Enfield has suggested a second round of PR, which he is keen to pursue. Simon says: “PR has definitely helped me and I recommend other people with a lung condition ask their consultant about it.”
Encouraging greater use of pulmonary rehabilitation
Homerton University Hospital in Hackney launched an initiative to encourage more people with lung disease to take part in pulmonary rehabilitation (PR). This followed publication of the National Clinical Audit of PR Service in England and Wales in February 2016. The audit showed that many people who would benefit did not enrol in PR or dropped out before completing treatment, possibly put off due to long waiting lists.
Laura Graham, Respiratory Lead Clinician at Homerton and a specialist respiratory physiotherapist, says the national audit chimed with the hospital’s own PR experience. “The national audit was a turning point. We knew that there was a significant population who would benefit from PR, however either we could not reach them or we could not support them to complete treatment.”
Homerton has introduced a number of innovations, which include a psychologist attending PR classes once a week, offering support around the emotional challenges of PR and following up with patients who do not attend. In addition, a multi-disciplinary team hold a PR education session, which all referred patients attend before their PR assessment. This has resulted in improved attendance to the PR assessment and completion of the PR course.
The hospital has also introduced a lower level breathlessness rehabilitation group for thefrailer people with more complex needs being referred. This group enjoys high levels of patient satisfaction despite some challenges, including the need to provide transport. This offers choice to patients who would otherwise be seen at home.
Other treatments that don’t use drugs are cognitive behavioural therapy, cough suppression techniques, breathing techniques, handheld fans, singing and exercise. We need more research to find out what works best. But many patients tell us how the quality of their lives has benefitted from treatments without drugs to improve breathlessness and cough. We want more health care professionals to take this into account.
A personal view: the benefits of singing
John Turner never much rated his singing voice. So, he was intrigued when the Royal Brompton Hospital invited him to join an experimental singing group for patients with lung disease. Today, some 15 years later, the group is still going strong and Singing for Breathing is recognised as an effective non-pharmacological treatment for people with lung disease. A number of groups are established around the country, bringing together people with a lung condition who enjoy singing and also benefit from learning the breathing exercises.
“Music is an immensely powerful tool,” says John, 82, who lives with severe emphysema. “A positive mood is vital in illness and music creates that mood.” John, from south-west London, believes that Singing for Breathing is at least as valuable as pulmonary rehabilitation in terms of its impact. “Socially, it works at every level. You are coming together as a group and enjoying each other’s company while doing exercises that help you to manage your condition. You are with people who understand what it means to live with a lung condition and who support one another.”
Groups supported by the British Lung Foundation have local leaders trained to lead singing groups for people with lung conditions. There also are independent singing groups.
Measures of success
Increased referral to, and completion rates for, pulmonary rehabilitation programmes for people with COPD with an MRC breathlessness score of grade 2 and above.
Increased number of pulmonary rehabilitation programmes which accept people with COPD with an MRC score of grade 2 and above.
An increase from 53% in the proportion of people with idiopathic pulmonary fibrosis (IPF) referred to a pulmonary rehabilitation programme, as measured by the BTS IPF registry, with a target established within one year.
Data need: National Asthma and COPD audit programme will start collecting data on every patient with COPD referred to PR in England from March 2019 to establish a baseline on referrals
Data need: Patient-reported experience of their access to and use of non-pharmacological treatments to be measured in proposed new patient survey.