Gypsy, Traveller and Roma cancer study aims to address “long history of neglect”

As part of a study funded by Yorkshire Cancer Research and led by researchers in the Department of Sociology at the University of York, people from GTR communities are being invited to share their experiences of cancer and help develop new ways to prevent cancer, improve early diagnosis and increase participation in screening programmes.

People from GTR communities are more likely to experience delays in cancer diagnosis and less likely to take part in cancer screening. They are also disproportionately impacted by cancer risk factors such as smoking, alcohol, poor nutrition and environmental pollutants.

One of the goals of the study is to help healthcare professionals better understand the everyday struggles and disadvantages faced by people from GTR communities when trying to access healthcare. The main aim is to improve how doctors and nurses communicate and build trust with these communities, so that people can get diagnosed earlier, receive better care and are more likely to survive cancer.

The research team will work closely with GTR partners across Yorkshire including Leeds GATE to establish culturally appropriate and timely access to healthcare.

Linda Barker, Health Access Coordinator at Leeds GATEsaid: “We're passionate about this opportunity supporting community members to take part in research to reduce health inequalities as experienced by Gypsies and Travellers, as well as other minoritised groups.

“We know how adversely experiences of cancer affect and impact our members’ lives and their families. Fear of disclosing ethnicity due to discrimination along with poor monitoring processes and knowledge among healthcare professionals has resulted in a lack of data. Without data we can't understand the problems, tackle them or monitor change. We are more than happy to be part of this great research and are excited to create an evidence base that can lead to change.”

Dr Sangeeta Chattoo, Senior Research Fellow at the University of York said: “This study will address long-standing health inequalities, institutional racism and marginalisation experienced by GTR communities living in Yorkshire.

“A long history of neglect has reinforced a taboo on cancer within these communities. Poor understanding of risk factors and symptoms of cancer, coupled with limited access to culturally appropriate screening services, results in delays in diagnosis, leaving healthcare agencies ill-equipped to respond.”

Karl Atkin, Professor of Sociology at the University of York, said: “Socio-economic deprivation, higher incidence of chronic health conditions and invisibility of racism experienced as a white minority have eroded trust in healthcare services.

“Poor ethnicity monitoring, and reluctance to disclose ethnicity for fear of discrimination by service providers, has resulted in a lack of robust data on cancer, exacerbating inequalities for these groups.”

The study will include a community health survey to explore cancer experiences, along with focus groups and interviews with individuals and families affected by cancer. As well as finding ways to make it easier for people to get help from the NHS, the study will also explore practical strategies that will help them reduce their risk of cancer.

Two toolkits - one for healthcare professionals and one for community members - will be developed to support better communication, more informed choices, and easier access to culturally appropriate services. These will be rolled out through community outreach events and evaluated to measure impact.

Dr Stuart Griffiths, Director of Research, Policy and Impact at Yorkshire Cancer Research, said: “Everyone deserves the chance to live a life free from cancer. This work puts people at the heart of the solution by listening to communities, understanding their needs and building trust. Yorkshire Cancer Research is dedicated to reducing inequalities and improving cancer survival for all communities across Yorkshire, so more people can live longer, healthier lives.”

The terms ‘Gypsies’ and ‘Travellers’ refer to Romany English Gypsies and Irish Travellers, two distinct ethnic groups recognised under Equalities Act 2010 legislation. Roma is also protected as a catch-all term for European ‘Gypsies’. There are several distinct groups of people, including Roma, Manouche and Sinti in Central and Eastern Europe. During the past 50 years increasing numbers of Roma people, particularly from Eastern Europe, now live in the UK.