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Practical Insights for Busy Caregivers

What it’s like to live with a medical condition

Ann McPherson was a family doctor in Oxford, England when she was diagnosed with breast cancer. Although she knew about the medical side, she couldn't find anyone to talk to about what it was really like to have the disease. “I realised that I wanted to know how other people had managed with breast cancer, and I didn’t just want to hear the stories of people who had ridden across France and ‘battled’ with their cancer, but just the ordinary people,” she later said.

Together with a colleague, who was having knee replacement surgery, she came up with the idea of a patient experience website., as it’s called today, provides free, reliable information about health issues by sharing people's real-life experiences.

The website covers 90 subjects in all. You can hear the experiences of many people per subject. Short interview segments (in video, audio, or text format) are grouped by theme, allowing users of the site to hear a range of experiences in a short time.

“Support, encouragement, empathy best comes from someone in the same situation as you and that’s why is so important,” said Alison, mother of Robert who has cystic fibrosis. “You can listen to people in the same position as you. You can listen to their experiences and see what they had to say about it.”

Patient interviews provide insights into making decisions about health and treatment, talking to friends and family, handling practical issues like money and travel, maintaining emotional well-being, and anticipating impacts on work or education.

It’s a useful resource to recommend to people in your life who are dealing with a health issue. It can also give you a glimpse of what they might be experiencing, putting you in a better position to support them.

Ann McPherson passed away in 2011, but her legacy lives on in the site she co-founded.

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