Chronic Obstructive Pulmonary Disease (COPD) is a serious illness causing disabling breathlessness and limitation to daily activities. The illness is common and treatable, affecting people in communities throughout the UK.
UPTURN is a newly launched research programme aiming to make it easier for people living with COPD, to benefit from Pulmonary Rehabilitation - an effective treatment that supports management of the condition and better long-term health outcomes for those afflicted.
UPTURN is a 5-year, £2.8m research programme funded by the National Institute for Health and Care Research (NIHR), and led by hospital consultant Dr Jonathan Fuld (Cambridge University Hospitals NHS Foundation Trust).
The “COPD and Me” UPTURN Community Engagement Assembly on 27th November brought together about 120 people including Bangladeshi community leaders, and their guests from Peterborough, London and Bedfordshire. Research Champions also attended from the Peterborough Community Voluntary Services with representatives from Black African, Black Caribbean, Chinese, Nepalese, Russian and LGBTQ + communities in the UK.
The evening of talks, discussion and networking, at the Cresset Theatre in Peterborough connected health researchers with community groups to understand how to work well together in research and to raise awareness of issues affecting people who live with lung disease. The event was hosted by members of the Bangladeshi community and led by the UPTURN study’s Patient and Public Involvement leads, Tracy Cripps and Mir Abdul Gofur.
Presentations were given by NHS England, Asthma + Lung UK, the West Ham United Foundation and Anglia Ruskin University. Guests were invited to share their experiences as patients and carers, and the impact of lung disease on their lives.
“It was a pleasure to take part in this event. We got a lot of information which was so useful for the improvement of our wellbeing and health. Brilliant organisation of the event, delicious food. I hope to take part in research.” Guest feedback
Researchers Dr Frances Early (Cambridge University Hospitals NHS Foundation Trust) and Dr Suman Prinjha (University of York) set out the aims and activities of UPTURN.
Pulmonary rehabilitation is a programme of exercise and education that can transform quality of life for people with COPD by reducing breathlessness and hospital admissions – but some people who are referred for pulmonary rehabilitation do not attend their appointment and so never get the benefit of the treatment. Some ethnic minority groups have higher rates of COPD than others but low attendance at pulmonary rehabilitation. There can be many reasons for this.
Working with patients from Bangladeshi and Black African and Caribbean communities, UPTURN will create a support package that can be personalised to help people attend their pulmonary rehabilitation appointment. The aim is to increase the number of people who attend their appointment regardless of their ethnicity or socio-economic level.
The event was extremely well received. The UPTURN team really appreciated the time taken by community members, some of whom came from afar, and who gave feedback and advice about how we can work well together.
The team was also grateful to those who said they would be willing to take part in group discussions and interviews to help design the UPTURN support package. The package will be tested in the NHS in a large clinical trial involving around 1500 patients.
If you would like to hear about news, future activities and opportunities to take part in the UPTURN project, please join our mailing list.
The UPTURN team would like to thank the NIHR and the NIHR Cambridge Biomedical Research Centre for funding this event.
Funder statement: This study/project is funded by the National Institute for Health and Care Research (NIHR) Programme Grant for Applied Research (NIHR204401). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.