Perspectives from the PSRC Newcastle, Disadvantaged Communities Theme were included in a new report from Bowel Cancer UK on cancer diagnoses in hospital emergency departments – which is the foundation of a new campaign by the charity on this topic.
This patient insight report is an important first step in understanding the experiences of people and families affected by emergency bowel cancer diagnoses. Hearing these perspectives helps us appreciate the emotional and practical impact on patients and their loved ones, while also beginning to identify areas where improvements could make a real difference.
Connecting experiences from both patients and professional viewpoints helps us develop a complete picture of what happens, what is working and what may need to change. This comprehensive understanding is the first step in making sure that future interventions are grounded in real experiences and, ultimately, that patients and families are better supported.
Please follow the link below to read the full report:
Co-authors: Domna Salonen, NIHR Newcastle PSRC PhD student Haley, Joanne and Carol from the co-development group
Patient safety research considers various matters of life, death and health. These are not any academic topics. For many people, these are experiences they have lived through and are living with.
Before I started my research training, I became a practitioner. Mental health occupational therapy taught me a lot about healthcare and relationships. I learned that it is wise to listen to patients. Two different people can have the same condition, but completely different experiences. I also learned that it is caring to have difficult conversations. At its best, healthcare is about moments when a person in pain gets to talk with someone who is wise and caring. Both the patient and the practitioner use their voice, both listen, both learn.
Now I am learning to research. I have clear boundaries between how I engage with people as a researcher and as a therapist. There are great differences in how to build and navigate relationships in each role. As different as it is to show up as a researcher and as a practitioner, there are some similarities. At its best, also research is about people having good conversations. Researchers and people with personal experience get together to speak, listen and learn.
In my doctoral research, I work with a group of people who I have met through my previous projects. Different group members have personal experiences to share. Some know how it feels to live with addiction, and how it is to recover. Some have been family carers for someone with mental health problems. The common ground is that we all have a strong idea on what mental health support is at its best and at its worst.
We all bring with us our own reasons and motivations to do our bit in research:
Joanne: I want to improve things for others. I want to make positive, long-lasting change easier for everyone: professionals, policymakers, patients, families.
Haley: I want people’s voices to be heard by those who make big decisions at the higher levels. Research is a vital help.
Domna: I research because I want to understand how health systems can grow in wisdom and care. In this group, I can test my ideas and connect with practice memories.
Carol: I want to share my lived experience as a carer by helping with research and use it to help make change for future generations.
Together, we work with clear ground rules. One person speaks at a time, everyone listens. If someone shares a personal story in the room, it stays in the room. We agree and disagree with uncompromising respect. Honesty is essential and expression is free – we can swear, but not at each other.
While we keep the conversation flowing, we get things done. We have spent time talking through the logic behind the project. We have developed information sheets for research participants. We have thought through scenarios that could bring up ethical challenges. We prepare to make sense of data together in the next stages of the research. We have gathered ideas on who to connect with in the later stages of the project, to share findings and learning.
We keep the conversation alive to catch ideas and build new understanding – of healthcare and of each other. We can all agree that hope lives where people sit around a shared table and speak their minds.