FOUNDER & PATIENT ADVOCATE

Max Poplawski

I’m the founder of Room to Say. I was diagnosed with ankylosing spondylitis at seventeen, while I was still at school.

A habit my parents taught me

My parents taught me to take questions and notes about how I had been feeling to hospital appointments. With limited time and months between visits, it gave me something to refer to when I needed to explain what was happening.

Over time, preparing became a habit. I believe it has supported my care and my relationship with my doctor. Room to Say grows from that experience: a little help for people learning to prepare for healthcare conversations themselves.

Patient advocacy experience

My patient advocacy work has included working with EULAR, the pharmaceutical company UCB, and the National Ankylosing Spondylitis Society (NASS, now the National Axial Spondyloarthritis Society). I have also been part of Arthritis Research’s young persons’ panel.

These references describe my own experience. They do not imply endorsement, sponsorship or clinical review of Room to Say by those organisations.

How I approach the guides

I write from my own experience as a patient and patient advocate. I do not speak for everyone living with a condition, and these guides do not claim clinical review. They focus on preparation and communication, with links to the patient resources used.

You deserve to be heard even when you forget something or find it hard to explain. Preparation is support, not a test of being a good patient.

Read the appointment preparation guides, including preparing for a rheumatology appointment.

Get in touch

Email max@roomtosay.org. For app help, use support@roomtosay.org.