The DH commissioned the Picker Institute to undertake a review of the experience of seldom heard people affected by COPD as part of the NSF development.  The work, that used focus groups with minority ethnic patients has now reported and is available at:
http://www.pickereurope.org/Filestore/Publications/Picker_COPD_NSF_final_report_with_cover.pdf.

Key points:

• The interviews were with those with a COPD diagnosis, so within the system and the report concluded they were probably at the “more positive end of the spectrum”. Only two patients had been hospitalised.
• The key outcome was that they found so few patients with COPD from minority ethnic communities. There were a number of theories expressed as to why, even in BME populations with high smoking rates, and they think it worthy of further research.
• There were very few significant differences between the experience of patients from BME backgrounds and those from the majority white population.
• There is very little understanding of COPD in the general population.  Those with diagnosed COPD were frustrated at the low profile.
• Most diagnosed patients accepted that smoking had at least contributed to their condition.
  People were extremely trusting of their healthcare professionals.
• Most knowledge was received from the PR courses. Call for PR to be “better marketed”.
• Self –management plans as a “contract” between the patient and NHS received a muted response.
• End of life care was a “very difficult issue to get to grips with”. Most people assumed that “the hospital will bring it up when it’s time”.
• People were happy with existing technology and not averse to more tele-monitoring if it would avoid admission.