Patient voice as evidence in glaucoma care: a Q&A with Joanne Creighton, Chief Executive at Glaucoma UK

Q: Glaucoma care is often described as being “under pressure”. What does that really mean right now?

A: Glaucoma services are evolving quickly. Demand is increasing, new models of care are being introduced, and teams are adapting at pace to meet patients’ needs.

Clinically, this is a highly data driven specialty — pressures, visual fields and risk scores are measured with great precision every day. The opportunity now is to make sure patient experience is given the same visibility, so care continues to work well not just clinically, but also for people day to day over the long term.

Q: Why is patient experience so critical in a condition that’s clinically led?

A: Because glaucoma care only works when patients remain engaged over decades. Adherence, trust and understanding are not “nice to have” extras — they are fundamental to outcomes.

When patients feel unclear about their risk, unsure about follow‑up, or unsupported at key moments such as diagnosis, the effects ripple outwards. They influence treatment adherence, clinical workload and long‑term outcomes. Listening properly to patient experience is not a soft exercise; it is part of delivering safe, effective and sustainable care.

Q: Haven’t we already heard from patients through clinics, complaints and charities?

A: We do hear important insights every day — in clinics, through support services, and in conversations with patients and carers.

What’s changing now is the scale and structure of that listening. As services are redesigned and decisions are made about future models of care, there’s real value in bringing those individual insights together into a clear, representative evidence base that can actively inform planning and policy.

Q: Is that what the Glaucoma UK National Patient Voices Survey aims to do?

A: Exactly. During Glaucoma Awareness Week (29 June–5 July 2026), Glaucoma UK is launching the Glaucoma UK National Patient Voices Survey — the largest UK‑specific patient voice survey in glaucoma to date.

We’re aiming to hear from many thousands of people across the UK, creating a robust picture of what glaucoma care feels like today — what’s working well, where patients feel supported, and where there are opportunities to strengthen care still further.

Q: How is this survey different from a typical patient satisfaction survey?

A: This is not a satisfaction scorecard, a league table or a naming‑and‑shaming exercise. It is a deliberate attempt to rebalance the conversation.

The survey is designed to bring patient and carer experience into the same room as clinical outcomes, workforce pressures and system‑level decision making. We want to ask solution‑focused, practical questions that can inform real change — without losing sight of what matters most to patients themselves.

Q: Who has been involved in shaping the survey?

A: The survey was developed in partnership with the Picker Institute, with input from clinicians, industry partners and representatives from across glaucoma care.

From the outset, the intention was collaboration — ensuring lived experience, clinical evidence and operational insight work together to support meaningful, sustainable change.

Q: What kinds of themes are emerging from patient engagement so far?

A: Patients often talk about wanting clarity, reassurance and continuity — particularly around diagnosis, follow‑up and long‑term management.

We hear about the importance of clear information early on, confidence in treatment plans, and support in managing the emotional side of living with a sight‑threatening condition. Understanding these experiences can help inform service design and improve clinical outcomes over time.

Q: Why is this moment such an important one for patient voice?

A: Glaucoma care is changing and that brings real opportunity. New models of care can improve access and efficiency, but they work best when patients understand how they fit together and feel confident in the system supporting them.

Listening at scale now will help ensure those changes land well, and, we believe, will strengthen trust and resilience across care pathways.

Q: How can professionals and partners support the survey?

A: From the start of July for a period of two months, patients will be able to access the survey directly via the Glaucoma UK website, making it easy to complete in their own time.

We also have clear, ready‑to‑use materials to support signposting in clinics, services or communications. A brief explanation from a trusted professional, alongside a simple prompt to visit the Glaucoma UK website — can significantly increase participation.

If you’d like resources to help signpost patients to the survey or would like more information about non‑digital survey options, please email voice@glaucoma.uk.

Q: What happens after the survey closes?

A: The findings will underpin an ongoing programme of work, supporting conversations about practice, policy and service design that are grounded in patient priorities.

Professionals who want to stay connected to the findings and wider discussions can join Glaucoma UK as a Free Professional Member at glaucoma.uk/professional-membership

A final thought

Glaucoma care is entering a period of significant change, and that creates real opportunity.

The Glaucoma UK National Patient Voices Survey is about ensuring those changes are shaped with patients, using their experience as evidence to support better decisions. We hope you’ll be part of helping patient voices be heard, and acted upon, in the years ahead.