“No advice, help, information or reassurance was given to me.”

Posted: Thursday 06 May 2021
doctor consultation

Margaret went to a routine eye test at her local optician six years ago. At the time she had no reason to believe there was anything wrong.

But, shortly after the test finished she was told ‘very bluntly’ that she had dry age-related macular degeneration (AMD) in both eyes.

“Since I knew nothing about it I started asking questions,” She said.

“They were answered by me being handed a leaflet and an Amsler grid. I left there in a panic, very upset and expecting to lose all of my sight soon.”

She added: “No advice, help, information or reassurance was given to me. I was devastated.”

Last month we asked you to share your diagnosis stories. We have been overwhelmed by the number of responses.

So, what are we doing to improve the experience of diagnosis for patients?

In April more than 500 eye care professionals took part in an online training module to improve the diagnosis experience for patients being told they have macular disease.

We teamed up with the Optical Consumer Complaints Service (OCCS), with the support of Optician magazine, to provide free online training for eye care professionals to help them understand the impact of a diagnosis and how they can help alleviate patients’ fears and anxieties.

Qualified optometrist, Richard Edwards, who led the training said: “Delivering this content was one of the most powerful training events I have experienced. Thanks to the Macular Society we were able to use audio clips from real patients describing the emotional impact of their consulting room experience. I couldn’t imagine a better way to land the key message about how we have to be aware of the impact we create in the way we communicate with patients.”

We will continue to work closely with the OCCS to deliver similar training events, with a plan to make the recent event a face-to-face training session as soon as restrictions allow.

Richard added: “I can’t wait to get out on the road and use this material for face to face delivery as I think it will create an enjoyable and engaging session that I am sure will help us to improve the patient experience in the future.”

Thank you to everyone who shared their experiences with us and if you are happy to help with future training events, please do get in touch at stories@macularsociety.org