I recently sat down with Macular Society chief executive Cathy Yelf to talk about how the charity had been forced to tackle the challenges of the coronavirus pandemic and how she wanted to increase awareness of the work it carries out. After hearing how one optometrist told a patient they had age-related macular degeneration (AMD), I feel obliged to help the charity in its cause.
The impact of being diagnosed with AMD is something that doesn’t require too much imagination. Simply put, it would be devastating. So upon hearing from Cathy about an optometrist that told their patient to ‘chillax’ about their just-diagnosed AMD, I was astonished and angry that such a massive moment could be dealt with so flippantly.
Yes, I realise that it’s probably an isolated example, but after spending time working with the Macular Society and the Optical Consumer Complaints Service (OCCS) on the Macular Spectacular patient communication webinar recently, it’s clear that there is an empathy gap. And the problem will get bigger, thanks to the ageing UK population and more AMD being diagnosed in optical practices thanks to imaging advances.
There are two quick ways to improve communication of a diagnosis. The first, would be to watch the recent Macular Spectacular lecture on-demand at https://bit.ly/3n0T8me. Hosted by OCCS consultant and optometrist Richard Edwards, the webinar uses real life patients to convey how they felt when they were diagnosed with AMD in an effort to reinforce the need for clear and empathetic communication.
The second, is to simply make your AMD patients aware of the Macular Society and the support it offers with appropriate signposting. Last year, the charity’s 400-plus face-to-face group meetings had to pivot to a teleconferencing model that put individuals living with AMD in touch with one another to share help, advice and emotional support. Beyond that, the Macular Society hosts over 15,000 hours of counselling sessions and, until coronavirus infection control measures were introduced in practices, produced over 320,000 information leaflets each year.
Patients just need to know the charity exists.