A report from King’s College London sets out the stark reality people with chronic obstructive pulmonary disease (COPD) face in securing diagnosis and accessing care.
The ‘A matter of life and breath’ report, launched at the House of Commons, reveals people with COPD face difficulties in getting timely diagnosis and access to services to manage their condition.
With 1 in 10 adults over the age of 40 with COPD in the UK at the cost of £2billion each year to the NHS, the report authors say people with the condition have been long overlooked.
A total of 120 people with COPD and their families took part in the survey between September and November 2024. Testimony from group workshops and individual interviews found:
- People with COPD face delays in accurate diagnosis and lack of information provided about COPD. Many people with COPD report not being diagnosed for years which impacts treatment effectiveness but also leaves them feeling frustrated and unsupported.
- People with COPD consistently report difficulties accessing services that are essential to managing their condition, including GP appointments, specialist care and pulmonary rehabilitation.
- Many advocated for better support in managing exacerbations at home with prompt access to intervention where necessary to reduce hospital admissions and improve quality of life.
- As new treatments emerge, people with COPD express a strong interest in participating in research and accessing innovative treatments, and ensuring equitable availability across different regions.
Of the participants, 65% experienced a flare up in 2024 and 16% had been admitted to hospital more than once.
57% of the participants were managed solely by their GP. Many participants said they found it difficult to get access to timely GP care, obtain prescriptions and navigate the healthcare system. This led to frustration and feelings of being a ‘second class’ citizen.
67% of participants said their condition limits daily activities. Access to pulmonary rehabilitation, oxygen assessment and psychological therapies including peer support was variable depending on location.
29% of the participants were carers, with 50% of carers undertaking more than 50 hours of caring responsibilities a week. Carers said they felt they were undervalued, and comprehensive support systems were needed.
The report authors have developed recommendations for optimal COPD care, which consists of four fundamental pillars: diagnosis, information, monitoring and treatment.
Raj, 55, said: “My time as a long-term carer and member of the community who enjoys volunteering and socialising had been severely impacted by my COPD. My illness has left me physically and mentally weak, which affects my work opportunities, economic status and ability to socialise.”
"For the first time, we’re truly hearing the voices of people living with COPD — and those who care for them," said Professor Mona Bafadhel, co-author of the report from King’s College London. "Their experiences reflect both the challenges they face and the resilience they show every day. As a collective, we must listen, learn, and act together to improve their lives. This report is a call to put their voices at the heart of care, ensuring that decisions are shaped by those who live with the reality of COPD.”
"COPD (Chronic Obstructive Pulmonary Disease) is a disease that affects thousands in the UK and millions world-wide and yet the voices of those living with this condition is seldom heard," added Dr Richard Russell, Co-Director King’s Centre for Lung Health at King’s College London.
"The COPD Patient Voice Report has given them a voice. The launch of the report at the House of Commons provides a platform for the findings to be shared with politicians, policy makers, commissioners, clinicians and of course the patients themselves.
"Patients feel isolated, that they have to fight to be diagnosed and to receive the effective treatments such as pulmonary rehabilitation and inhaled treatments. This report is a call to arms to build the fundamentals of care that all patients need and deserve to reduce their symptoms, reduce unnecessary hospital admissions and prevent premature mortality.”
