In November 2024, members of the PrimaryBreathe Patient and Carer Panels came together to share their lived experiences and perspectives on improving care for chronic breathlessness.
Funded by the National Institute for Health and Care Research, PrimaryBreathe is a research programme led by Dr Anna Spathis and based at the University of Cambridge, Primary Care Unit (PCU). It aims to increase support for people living with chronic breathlessness and their family carers, particularly through interventions that can be delivered in primary care settings without relying on additional medication.
Patient and Public Involvement and Engagement (PPIE) is central to the PCU's research, ensuring that the perspectives of patients, carers, and the general public are embedded throughout the research process. At the PCU, PPIE seeks to embed partnership within its research. The PrimaryBreathe team meets regularly with panels recruited from diverse communities from across the UK, to ensure the programme’s work is inclusive and impactful.
During the November meeting, panel members spoke openly about their experiences of breathlessness and caregiving, offering valuable insights into how primary care treatment can be improved. Discussions highlighted the importance of empathy, accessibility, and cultural sensitivity in delivering treatment. Members emphasised the need for health professionals to build trust and understanding, and for treatment approaches to recognise language barriers, gender and cultural sensitivities, and the broader social impacts of chronic conditions.
The group also discussed how positive messaging within communities can encourage uptake of treatment, and stressed that care should be offered without pressure. Members suggested that treatment could be supported by a range of accessible and digital resources to help people manage their symptoms in ways that suit their lives.
How PrimaryBreathe is responding
The PrimaryBreathe team is committed to listening to and acting on the feedback from its panels. This is exemplified by the FACE study (Facilitating Access to Chronic breathlessness management for Ethnically diverse communities), which is exploring practical solutions for delivering breathlessness interventions in primary care, particularly for ethnically diverse populations. By incorporating the lived experiences of patients and carers, the programme aims to build an inclusive and supportive framework for managing chronic breathlessness.
Read the full report from the November Panel Discussion here.