“He said ‘You poor, poor boy’… that has stayed with me my whole life”

Anglia Ruskin University scientists have examined the impact of a sight-threatening diagnosis on patients through a series of in-depth interviews.

The research, which was published in BMJ Open, examined the experiences of 18 patients diagnosed with eye disease in England.

Four themes were identified by Dr Jasleen Jolly’s research team: the convoluted process of being diagnosed, the impact of clinicians’ words, the search for information, and reflections on what could be improved.

The researchers highlighted that interactions with clinicians can have a lasting impact on how a diagnosis is experienced and how well the patient is able to come to terms with their visual impairment.

Eye conditions patients were diagnosed with included retinitis pigmentosa, diabetic retinopathy, Stargardt disease and macular degeneration.

One patient described having a series of tests but being unaware of what the tests were for.

“Eventually after one set of eye tests in early 1999, I got the letter - a four-line letter, saying that I had retinitis pigmentosa,” he said.

Another patient shared how the protracted wait for a diagnosis affected his work and relationships with people.

He waited 14 weeks for an initial consultation and then a further five months for the results of tests.

“Five or six months is a long time when you're waking up every day worried, and you're not sleeping well,” he said.

Another common thread in the interviews with researchers was the impact of the words clinicians chose.

Speaking about the diagnosis, one patient recounted: “He looked at me, sort of shook his head and he said, ‘You poor, poor boy’ and… that has actually stayed with me my whole life… (it) really made me feel like it was something incredibly bad… it sort of tainted my view… of the condition.”

Another patient described her experience of being diagnosed as “like being hit by a brick.”

“He said to me ‘Right… there’s no point in beating about the bush… You’re blind’,” she remembered.

In terms of suggested improvements, patients highlighted the value of being offered counselling, support groups and being given information about assistive technology.