The EMJ recently spoke to the British Lung Foundation (BLF) about the work they do to raise awareness of chronic obstructive pulmonary disease (COPD) throughout the year and also in the context of this year’s World COPD Day, which took on 15th November 2017. We also discussed current trends in, and strategies to combat, lung disease, and the BLF’s involvement in such areas.
Q: Could you give a few examples of the kinds of campaigns that the British Lung Foundation (BLF) typically undertakes for this event?
A: The BLF has typically used World COPD Day (WCOPDD) to release custom guides and information to help people take control of the disease and live fuller, more active lives. This included launching a BLF COPD Pathway in 2013, an interactive online guide that showed users the best practice treatment options for all stages in the COPD patient journey, and developing the first ever nationally available COPD Patient Passport. An interactive online version of the Patient Passport is also available and can be used by patients to generate a printable personalised report for use in discussions with their healthcare professional. In recent years, we have used WCOPDD to raise awareness of the ‘missing millions’; it is estimated that two-thirds of people living with COPD have not been diagnosed with the condition. In 2016, we promoted our online breath test and supported our Breathe Easy support groups to hold pop-up choirs in local supermarkets.
Q: What new initiatives and campaigns are taking place as part of WCOPDD this year?
A: As part of the ‘Many faces of COPD’ theme this year, we are working with a number of COPD patients, including younger people and never-smokers, to dispel the widely held but false belief that only smokers or older people are at risk of COPD. Patients we are working with this year include a woman who was diagnosed at 28 years of age due to a unique genetic deficiency and a man who developed COPD due to lung damage from repeated asthma attacks. The public will be directed to our online breath test and encouraged to take breathlessness seriously.
Q: Have any campaigns during any of the WCOPDD led to changes in government policy?
A: Policy changes tend to come over a long period of time. We have had many campaign successes, including securing a government ban on smoking in cars with children and influencing the London Mayor’s positive steps to tackling air pollution, from enforcing an emission T-charge to committing to creating an ultra-low emission zone. However, each year WCOPDD provides the perfect opportunity to engage with members of parliament and secure their support after the awareness day.
Q: To what extent has WCOPDD grown in significance over the years? Has it continuously received more attention over time?
A: WCOPDD has definitely grown in significance over the past few years and the BLF has seen an increase in the number of healthcare professions and services getting involved. Our supporters are also increasingly engaged with the blogs and posts we put out. Having these supporters has been invaluable; their personal stories and experiences have garnered the attention of journalists and the general public alike.
Q: Please tell us about the breath test and COPD Passport on your website as part of WCOPDD. What have been the results and feedback you have received so far from this?
A: The ‘Listen to your Lungs’ campaign encourages people not to dismiss feeling breathless when doing everyday tasks, because this is one of the main signs that they may have a lung condition. The aim is to reassure those that don’t have a problem and guide those with a significant problem to see their general practitioner (GP). The breath test has now been completed by around 325,000 people. After each phase of activity, we surveyed respondents to measure the effectiveness of the tool. The responses showed that 89% felt the breath test has helped them, 67% had taken action as a result, and 26,000 individuals have been diagnosed as a result. Many people who left comments said they were waiting to take further tests. Other comments included: “at last stopped smoking”, “GP has sent me on a pulmonary rehabilitation programme” and “diagnosed with asthma”.
Completing our COPD Passport is an easy way for patients to find out if they are receiving the care they’re entitled to and what to do if not. Feedback on the passport has been extremely positive, with patients telling us how it has helped them talk to their healthcare professional and improve their lives. Launched in 2014, this has now become a tool that COPD patients across the country are aware of and use.
Q: With cases of COPD increasing in the UK, despite a reduction in the number of people who smoke, are there any particular areas that the BLF is focussing research efforts on to reduce the numbers with the condition?
A: We have recently awarded funding to Prof Louise Wain, GlaxoSmithKlein; BLF Chair in Respiratory Research; University of Leicester, Leicester, UK, to conduct ground-breaking research at the University of Leicester. COPD is an incurable condition and, though smoking has been identified as the biggest risk factor for COPD, 20% of people with the condition have never smoked, and not all smokers develop COPD. Prof Wain will work with researchers across the world, using powerful new genetic studies and data collection, to explain why some people develop COPD but others do not, and why people with the same disease have different symptoms. Ultimately, we hope that this genetic information will help us predict who is at risk of disease and how the disease will progress, as well as enabling doctors to prescribe personalised medicine for the individual patient. In the short term, this research could identify smokers who are at highest genetic risk of COPD and encourage them to take preventative measures, such as quitting smoking, before they develop the condition.
Q: What are the most common issues that COPD patients tell you they have with their treatment?
A: The topic issues that our helpline nurses hear most about are:
- Getting a correct diagnosis
- Recurring chest infections
- Breathlessness on exertion, which they have not been taught to manage, and the resultant panic symptoms that follow
- Lack of knowledge about the benefits of pulmonary rehabilitation
- Side effects of inhalers and correct use of inhalers
Q: You provide a great deal of support for patients with COPD and other lung conditions on your website and via your helpline. Do you believe that there is, in general, a lack of information available to COPD patients in the UK, and if so, what more could be done to address this?
A: We would not say that there is a lack of information, but a low awareness that the information exists. To address the lack of knowledge, we have service development managers who inform healthcare professionals and commissions at the local level of what the BLF does and provides. We also use the media to signpost people to our website with stories relevant to lung conditions.
Q: What is the most pressing issue with regard to COPD currently?
A: In the UK, two-thirds of the people living with COPD do not even have a diagnosis and are not receiving treatment; COPD is also the only major cause of death that is on the increase. What is important to note is that this problem is the result of the long-term neglect of all complications of lung disease. According to our research, mortality rates for lung disease have not changed in over a decade; altering this situation will require national leadership. Governments and NHS England need to support the establishment of a taskforce for lung health being convened by the BLF if we are to improve outcomes for people.
Q: Have the aims and scope of the work of the BLF changed over time, and if so how?
A: The BLF wants to see the day that people can breathe clean air with healthy lungs: a big ambition. The organisation’s scope is not small either, it invests in research, provides support, and campaigns for change. The BLF is the only charity in the UK fighting for the one in five people with a lung condition. This has been at the heart of the charity since it was founded, and still is to this day.
Q: Please could you tell us about some of the exciting research projects the BLF is undertaking currently?
A: The BLF has recently funded three exciting research projects from Dr Lynne Prince, University of Sheffield, Sheffield; Dr James Dodd, University of Bristol, Bristol; and Dr Aran Singanayagam, Imperial College London, London, UK, in COPD. In healthy lungs, white blood cells called macrophages remove the harmful bacteria we breathe in and keep us free from disease. In the lungs of people with COPD, macrophages can become activated, which means they produce molecules that cause damage to the lung. Since we do not yet know how macrophages become activated, we cannot design a drug that stops it from happening. Dr Lynne Prince’s project will study the differences between macrophages from healthy humans and from individuals with COPD, so that we can identify how to turn off the macrophage activation and stop the damage being done.
Problems with thinking, remembering, and reasoning (known as cognitive dysfunction) are common in people with COPD. Although cognitive dysfunction may be mild and go unnoticed at first, it may gradually make it more difficult for COPD patients to do their daily activities and take their medicines properly. Dr James Dodd’s study aimed to drive improvements in the early diagnosis and management of neurocognitive difficulties without the need for long, complex investigations that may not be readily available.
Patients with COPD are also prone to severe virus infections that lead to exacerbations, which frequently result in hospitalisation and can be fatal. Mucus is produced by the normal human airways and has an important role in trapping invading viruses and bacteria to prevent exacerbations. Although the right amount of mucus is beneficial to prevent infection, diseases such as COPD are associated with excessive mucus production that can block the airways causing symptoms of cough and breathlessness. There has been interest in developing new therapies to reduce mucus production; however, it is unclear whether reducing mucus will have the detrimental side effect of removing the ability to prevent viral infections. Evidence from studies suggests that blocking certain components of mucus can severely impair the ability of the lungs to fight infections. Dr Aran Singanayagam’s study examines the relationship between airway mucus and viral infections in COPD.
Q: Has the BLF noticed any particular trends in regard to lung diseases in recent years. If so, what are the main reasons for this?
A: Our report, entitled ‘The Battle for Breath: The Impact of Lung Disease in the UK’ and accompanying website (https://statistics.blf.org.uk/), examined the overall extent and impact of lung disease across the UK. It also took a closer look at the impact of 15 major lung conditions. As an epidemiological study, it did not examine the causes, but it is the most comprehensive overview of lung disease in a decade.
The key findings included:
- Every 5 minutes, one person dies of lung disease and five more are diagnosed.
- One in five (12 million) people have had a lung disease diagnosis in their lifetime.
- The number of people dying from lung disease has barely changed in a decade; by comparison, the number of deaths from cardiovascular disease fell by 26,000 between 2008 and 2012 alone.
- Three of the UK’s top six killer diseases are lung conditions (COPD, pneumonia, and lung cancer).
- Several lung conditions (COPD, idiopathic pulmonary fibrosis, and bronchiectasis) are far more common than official figures suggest.
- Lung disease is a major factor in health inequalities; COPD is 2.5-times as common, and lung cancer twice as common, in the most deprived 20% of society compared to the least deprived 20%.
Q: Has an ageing population contributed to the high prevalence of lung disease in the UK? Has the BLF undertaken strategies particularly targeted to this population group?
A: An ageing population has contributed to the high prevalence of lung disease in the UK. We can see from our Battle for Breath statistics that people living with a COPD diagnosis are mostly aged >40 years. The proportion of people living with COPD also increases markedly with advancing age. We are expecting prevalence to increase even as smoking rates decline; in years to come, the focus will be less about smoking and more about people living longer and with more complex health problems. Our Listen to your Lungs campaign encouraging people not to ignore breathlessness was targeted at people at the highest risk of COPD, including people of an older age. We achieved this through targeted Facebook adverts and by working with magazines with an older readership.