Living with a respiratory condition in South West London: What matter most to patients

Healthwatch Croydon undertook research on the experiences of people living with respiratory conditions in South West London. They spoke to 41 people in Croydon and at outpatient clinics at St George’s Hospital and St Helier Hospital to understand what matters most to patients living with respiratory disease. 

Many participants were positive about the care and support they received, particularly specialist respiratory services, pulmonary rehabilitation programmes and relationships with clinicians. Patients valued clear information, being listened to, prompt access to support when their condition deteriorated and opportunities to improve their health through rehabilitation rather than relying solely on medication. Self-management support was especially well regarded, with several people describing significant improvements in their quality of life. 

The main concerns related to delays in referral, diagnosis and appointments. Patients described uncertainty while waiting for a diagnosis, difficulties obtaining GP and hospital appointments, cancelled appointments, long waits to see specialists and a lack of continuity of care. Many felt it was important to see the same clinician over time and were frustrated at having to repeat information to different professionals. Participants also highlighted the need for better information throughout their care journey, faster access to support and improved communication between services. 

The report concluded that patients want quicker referrals, clearer diagnosis and information, greater continuity of care and more support beyond medication. People also highlighted the importance of self-management programmes, family and carer support, psychological support, financial advice and practical assistance such as transport and parking to help them manage their condition and access services.