A LITTLE HELP BEFORE YOUR VISIT
Preparing for a rheumatology appointment
Before a rheumatology appointment, bring a short record of what has been happening, the questions you want to ask and an up-to-date medicines list. Follow the instructions in your appointment letter: different clinics and visits have different requirements.
Start with what matters to you
When I was diagnosed with ankylosing spondylitis at seventeen, my parents taught me to bring notes and questions. That habit is the starting point for Room to Say. You do not need to know the right medical words or produce a perfect account.
Choose the concerns you most want to discuss. Put them near the top of your list so you can find them easily in the room.
Describe everyday changes in your own words
Think about the period since your last visit, or when things first changed if this is your first appointment. Note what happened and roughly when, without trying to work out the diagnosis yourself.
- What have you noticed, and does it come and go?
- How does it affect sleep, getting ready, work, school or activities you care about?
- What feels different from your usual day?
A concrete example can give you a starting point:
“On three mornings this week, getting dressed took longer because of stiffness. I’d like to talk about what I should record before our next visit.”
This is an example of describing an experience, not a way to identify a condition. Keep uncertainty in your notes: “I’m not sure when it started” is useful to say too.
What to bring
Check your clinic’s instructions first. Guy’s and St Thomas’ rheumatology service asks patients to bring a list of their medicines. Keep your own list current and bring questions about anything you are unsure of. Read its appointment guidance.
Keep your appointment details and relevant letters together so you can refer to them if needed. If you need communication or access support, contact your clinic in advance to ask what can be arranged.
Questions you might choose to ask
- What information would help you understand the changes I’ve described?
- Can you explain what happens next?
- If tests are arranged, how and when will I hear about the results?
- What should I note between now and the next appointment?
- Who should I contact if I have a question before then?
Choose the questions that fit your visit. The NASS appointment resource offers further preparation prompts for people with axial spondyloarthritis, including ankylosing spondylitis. Explore NASS: getting the most out of appointments.
Leave space for the answers
Bring something to write on, or use your phone if that works for you. Ask for an explanation again if you need it. Before leaving, check the next step in your own words.
You can prepare using a notebook, phone notes or Room to Say’s public beta. The useful part is having your own words available when you need them.
Sources and further reading
- Guy’s and St Thomas’ NHS Foundation Trust: rheumatology appointments
- NASS: getting the most out of appointments
References checked 9 November 2026. These organisations do not endorse this guide or Room to Say.