By Daniel Morgan-Williams, Founding Director of Visualise Training and Consultancy
Living with Retinitis Pigmentosa (RP) is not just about the gradual loss of sight — it’s about navigating a world that often seems unprepared for people like me. As a patient, I’ve learned that the medical side of things — the diagnosis, the visual field charts, the endless tests — is only part of the journey. What’s often missing is the human connection: the need to be seen as more than a condition.
📬 Inaccessible Systems, Unseen Struggles
It starts early. Letters about appointments arrive in print I can’t read. Sometimes they’re in tiny fonts, glossy paper, or even worse — as scanned PDFs that screen readers can’t access. If the first contact is inaccessible, what does that say about the care to come?
It tells me: you haven’t considered me. And that message is loud.
🏥 Design That Includes — or Excludes
Walking into an optician’s or eye clinic can be overwhelming. Low lighting, cluttered layouts, shiny floors, or confusing signage — these things matter. I’ve had to guess where to go, bump into furniture, or stand awkwardly until someone notices I need help. The physical space can either support independence or highlight your vulnerability.
And let’s not forget the hospital letters sent in standard print, even after my records clearly state “registered blind.” These are small details, but they add up.
🗣️ Communication is More Than Words
How clinicians speak to us matters. Don’t tell me “there’s nothing we can do” and send me on my way. Take a moment. A life-changing diagnosis needs more than a rushed consultation. Patients deserve empathy, clear explanations, and reassurance that they’re not alone.
Jargon-free language. Body language that feels inclusive. Time to ask questions. These should be standard, not exceptional.
🌱 Signposting: Helping Us Move Forward
Being told you’re losing your sight is devastating. But it doesn’t have to be the end. That’s where signposting to support services, local sight loss charities, emotional support, peer groups, and rehab specialists makes a world of difference.
Too many people are left to navigate their way through grief on their own. This is where a holistic model of care comes in — one that supports both the emotional and practical sides of vision loss.
🧭 What Needs to Change?
We need:
– Accessible communications (letters in large print, audio, or digital formats that work with screen readers)
– Inclusive practice design that supports navigation for all
– Staff training on visual impairment awareness and inclusive communication
– Routine signposting to support organisations at the point of diagnosis
– Follow-up conversations — not just one-off appointments
I’m not asking for miracles — just to be seen. Not just as someone with RP, but as a whole person trying to adapt, live, and thrive.
👣 Final Thoughts
If you work in eyecare, ask yourself: Would my practice feel welcoming to someone with sight loss? If not, there’s work to do — and that work starts with listening.
See the person. Not just the condition.
Interested in hearing more? This perspective is also available as a CPD-accredited talk or conference presentation. For speaking opportunities, please email me at daniel@visualisetrainingandconsultancy.co.uk