30 October 2026
To coincide with the release of a new Talking Rheumatology podcast episode exploring the Writing to Patients resources, Karen Staniland, Patient Partner on the Writing to Patients from rheumatology research team, shares her experiences of living with rheumatoid arthritis, her involvement in the research and why writing directly to patients can make a difference to their care.
Why clinic letters matter
Living with rheumatoid arthritis means that I have had my fair share of appointments, conversations and clinic letters over the years. I know how daunting it can be to leave an appointment with lots of information to remember, including symptoms, treatment and what happens next. A clinic letter can provide an important reminder of what was discussed and agreed.
For me, a letter written directly to me feels different from those that feel as if they are written primarily for another healthcare professional. It recognises me as an active participant in my own care and gives me something I can return to whenever I need to check the plan, understand what happens next, or prepare for my next appointment.
Why I joined the project
I have lived with rheumatoid arthritis for 12 years and, with my background as a nurse, I have always been interested in communication between healthcare professionals and patients. When I became involved in the Writing to Patients from Rheumatology project, I was keen to bring my own experiences as a patient into the research.
Being involved from the beginning was important to me. I joined the project as the lead patient partner and an equal member of the research team. If we were going to explore how healthcare professionals communicate with patients, then patients needed to be part of those conversations and decisions.
I have contributed my perspective as a patient to the research design, patient and public involvement and engagement activities, study materials, the development of the resources throughout the project, and dissemination of the findings.
What we developed and why
The Writing to Patients project looked at the experiences and views of people cared for by rheumatology healthcare professionals (HCPs) and the healthcare professionals themselves, about clinic letters. We wanted to understand what patients want from their letters, as well as what helps or prevents healthcare professionals from writing directly to them.
What has really stood out to me is how valuable a clear, understandable letter can be. It should help a patient know what has been discussed, what has been decided and what they need to do next. That doesn't mean removing all medical terminology, but it does mean thinking carefully about whether the person reading the letter will be able to understand it.
Working together with patients and healthcare professionals, we developed practical resources to support rheumatology teams. These include tips for writing directly to patients, a suggested clinic-letter structure, a phrasebook with plain-English alternatives to medical terms, example paragraphs, patient information and a feedback form.
For me, the important thing is that these resources are practical. They are designed to help healthcare professionals make relatively small changes that can make clinic correspondence more useful and meaningful for patients.
Reflecting on the new podcast
The latest Talking Rheumatology podcast gives us another opportunity to talk about the project and why writing directly to patients matters. I really enjoyed being part of the conversation because it allowed us to explore some of the issues behind what might initially seem like a simple change to the way a clinic letter is written.
One of the things I have taken from the project is that communication isn't just about the information being accurate. It is also about who that information is being communicated to. As a patient, receiving a letter addressed directly to me makes me feel included in the conversation about my own healthcare.
In the podcast, members of the research team discuss what we have learned and why changing the way clinic letters are written helps support patients to be more involved in decisions about their care. I hope you'll give it a listen and hear the discussion for yourself.
Listen to the podcast here
What I hope will change
I would love to see more rheumatology healthcare professionals routinely writing clinic letters directly to their patients, with the GP copied in. It is a relatively simple change, but one that can make a real difference to how patients understand and actively participate in their care.
Please look at the Writing to Patients resources, listen to the podcast and share them with your colleagues. Most importantly, please keep the conversation going about how healthcare communication can work better for patients.