The unmet needs of respiratory patients

In pharmaphorum’s Respiratory disorders themed month we interview Dr Penny Woods, Chief Executive of the British Lung Foundation on the work of the charity and of unmet patient needs in this area.

Dr Penny Woods, Chief Executive of the British Lung Foundation, speaks with pharmaphorum about unmet patient needs in the respiratory space, the importance of patient self-management in this area and how we need to increase diagnosis of lung conditions. She also discusses how research in this area receives relatively low funding compared with other similar diseases and how we desperately need a greater investment in research in order to see a significant increase in the numbers of people surviving lung disease.

Interview summary

Can you please tell me more about the work of the BLF?

The British Lung Foundation is here to help the one in five people affected by lung disease in the UK, and raise awareness around respiratory health to the millions more at risk.

We provide practical support to make sure people with lung conditions, their families and carers get the right information when they need it. We have a Helpline which is manned by a specialist team of nurses and advisers ready to answer any question in confidence, including advice about particular conditions, questions about rights and benefits, or simply to provide a friendly and caring ear to listen. The BLF also has over 230 Breathe Easy support groups all across the UK, so that people who are affected by lung disease can meet in their local area to find out more about their conditions and provide support and companionship to each other. The BLF also has Integrated Breathe Easy groups – these groups are integrated across their local respiratory pathways working with healthcare professionals (HCPs). HCPs are in turn encouraged to refer patients to their local integrated group.

“The British Lung Foundation is here to help the one in five people affected by lung disease in the UK…”

Campaigning is an extremely important part of our work. One of our recent successes saw MPs vote in favour of a ban on smoking in cars with children. We also influenced a major move towards introducing standardised packaging for tobacco products, which was debated and voted on in Parliament. Following a Government consultation, we hope to see it introduced in the UK in the near future. Our lung testing events, Love Your Lungs, and work place testing have also proved very successful.

Research is fundamental to our work and we are constantly campaigning for much-needed funding into understanding, alleviating, treating and preventing lung disease. The BLF invests around £1 million into research every year and provides research grants to scientists from all over the UK.

None of this work would be possible without the dedication of our fundraisers and the partnerships we have with corporates including pharmaceutical companies.

What lung conditions does your charity support?

We are here to help everyone affected by lung disease, whatever the condition. Some are better known and common, such as lung cancer which kills over 35,000 people every year in the UK, and chronic obstructive pulmonary disease (COPD) which affects an estimated 3 million people. Others are less known, such as idiopathic pulmonary fibrosis (IPF) which has no known cause, and the asbestos-related cancer mesothelioma, for which there is currently no cure.

What common misconceptions are there across lung disorders?

There are some common misconceptions across lung conditions. For example, people often think that they can ignore having a cough or feeling breathless however, these aren’t just signs of being unfit, getting old or just a ‘smokers’ cough’, they can be symptoms of lung disease. It is vital that anyone who has had a cough for longer than three weeks or who feels breathless through non-strenuous exercise visit their doctor.

There is also a lot of stigma around lung disease and smoking. There is often a tough luck attitude from society because many regard diseases, such as lung cancer or COPD, as being self-inflicted due to smoking. However, smoking is highly addictive and very difficult to quit. Many of those living with a smoking-related lung disease started smoking decades ago, at a time when public awareness about its dangers was far less developed than it is now, with far less support available for people wishing to quit.

And it isn’t true that everyone with a lung condition has smoked. In fact, nearly one in five cases of lung cancer are non-smoking related – that’s around 5,000 deaths a year in the UK and nearly 20 per cent of COPD cases are non-smoking related. Over 5,000 people die of the asbestos-related lung diseases such as mesothelioma, lung cancer and asbestosis in the UK every year. Idiopathic pulmonary fibrosis (IPF), which affects non-smokers and smokers but for which there is still no known cause, also kills around 5,000 people every year.

“There is often a tough luck attitude from society because many regard diseases, such as lung cancer or COPD, as being self-inflicted due to smoking.”

What are the latest medical advances for lung conditions that you are most excited about?

Some of the most exciting research is actually being funded by the BLF and we look forward to their results.

We are currently funding £2.5m of research projects around mesothelioma. Prognosis for people diagnosed with mesothelioma is very poor, with no universally effective treatment or cure currently available. Our research includes a number of studies researching targeted therapies and developing treatments that could avoid the side-effects of more standard radio and chemotherapy.

We are also funding significant research into IPF. The number of IPF cases diagnosed annually is increasing but the reasons for this are unknown. We are researching how to control fibroblasts – one of the cells involved in the scar formation seen in IPF as well as testing a drug that lowers stomach acid to see if this has an effect on its symptoms and/or on the disease progression.

To find out more about our research work please do visit our website.

Do you see any similarities in patient’s needs across different lung conditions?

There is a huge range of lung diseases which have individual needs. However, there are a number of similarities in how they should be dealt with for optimum outcomes.

Most people with a lung condition will experience breathlessness or coughing. Everyone experiences breathlessness at some time. However, breathlessness as a medical symptom is an unpleasant awareness of difficult or uncomfortable breathing that is greater than you would normally expect. With coughs, anyone experiencing a persistent cough for more than three weeks or a cough that is progressively getting worse should seek advice from their GP.

Working towards patient self-management is an important tool for disease management among healthcare professionals. Self-management can help improve medicine adherence and symptom-management as well as cut hospital admissions and save on GPs’ time. The BLF has a range of resources that can support self-management, including self-management packs as well as a COPD patient pathway.

Pulmonary rehabilitation (PR) also plays an important part in the needs of patients with a lung condition. PR is a programme of exercise and education for people with long-term respiratory problems. Studies have shown that it can improve measurements of health and wellbeing, such as the distance an individual can walk or their likelihood of needing to go to hospital. Different PR programmes should be developed for different lung diseases.

“… improved diagnosis is absolutely crucial for the health of a patient with a lung condition.”

What is the biggest unmet need for patients with lung conditions?

There is more than one major unmet need for patients with lung conditions. These range from the need for improved diagnosis to appropriate treatment, care and increased research funding.

Firstly, improved diagnosis is absolutely crucial for the health of a patient with a lung condition. This means improving how we diagnose the predicted millions of people in the UK living with an undiagnosed lung condition and diagnosing patients at the earliest possible stage of their condition. This improved diagnosis could offer patients better treatment options and a higher quality of life, with the appropriate tools to manage their condition. The BLF has been working hard to improve these low diagnosis rates, for example by working with clinical commissioning groups (CCGs) throughout the country to raise awareness of COPD through our Love Your Lungs events. Health screening for this condition is particularly important as it is estimated that three million people are living with COPD in England alone, yet only 800,000 have been diagnosed.

Secondly, the availability of the appropriate treatment and care is paramount to the quality of life a patient may expect after being diagnosed. This means ensuring that patients have access to medicines that can help manage a condition as well as services such as personalised oxygen and PR that can be tailored to the individual.

Finally and crucially, we must work towards increasing the amount of funding that is invested into research for lung disease. Historically, there has been a lack of investment in researching respiratory conditions, a substantial factor behind the poor survival rates we see for patients with lung disease. It is shocking, for example, that lung cancer research receives funding totalling approximately a quarter of that allocated to breast cancer, a third of that allocated to leukaemia, and half of that allocated to bowel cancer, even though it kills more people every year than all three put together. We work hard to raise funds for research but we cannot do this alone. Other lung diseases are in the same situation and receive much less research funding than other diseases that kill similar numbers of people. We desperately need a greater investment in research if we are going to see a significant increase in the numbers of people surviving lung disease.

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About the author:

Dr Penny Woods is Chief Executive of the British Lung Foundation (BLF), the leading UK research, campaigning and patient support charity for people affected by lung disease. Qualifying as a medical doctor in 1987, Dr Woods has also worked as a healthcare management consultant for a range of clients including governments in the UK and overseas, multi-national companies, NHS organisations and private providers of healthcare. Prior to joining the BLF, she spent three years as Chief Executive of the not-for-profit patient organisation, the Picker Institute Europe. Her passion for working on behalf of patients comes from personal experience with family members with motor neurone disease, cancer, asthma & obstructive sleep apnoea.

To find out more about the BLF, get access to useful and expert information on lung disease and how we can support you visit: www.blf.org.uk

Donate to the BLF online or text ‘LUNGS’ to 70500 to donate £5 today.

If you would like to commission a work place testing day for you team, then please get in touch with our corporate team via email corporate@blf.org.uk.

Have your say: What can be done to improve diagnosis of lung conditions?