People with sight loss “left to deal with diagnosis alone,” says RNIB

People with sight loss are being left to deal with their diagnosis alone, according to the Royal National Institute of Blind People (RNIB).

Three quarters (74%) of those diagnosed with sight loss were given no advice or guidance on what emotional support could be available to them, the charity has reported.

Of those surveyed, 60% admitted to feeling lonely after their diagnosis, while 54% said they were isolated or cut off from those around them.

The RNIB also found that the prevalence of anxiety is higher amongst blind and partially sighted people, with 34% experiencing it – compared to 23% of the general population.

The charity’s Voice of the Customer report engaged with 402 people across the UK.

The findings coincided with Mental Health Awareness Week, which took place last week (13–19 May).

The report also highlights gaps in the care offered in appointments where individuals are diagnosed with sight loss.

Many of those surveyed felt their appointments were abrupt and that they had left feeling unsupported and anxious.

Blind and partially sighted people reported leaving their appointments in a state of shock, with many reporting that they didn’t feel able to ask for more information on how to cope with their condition.

The RNIB’s chief social change officer, Vivienne Francis, said: “The RNIB’s latest report starkly highlights how many blind and partially sighted people are not getting the vital support they’re legally entitled to, making them more at risk of mental health crises. We need emotional support to be embedded into all clinical touch points, ensuring people with sight loss are not left to deal with the emotional impact of sight loss alone.”

Vision rehabilitation should be adequately resourced so that it can deliver “a comprehensive and effective service, including signposting to counselling and emotional support services,” Francis said.

In March 2024, the charity revealed that thousands of blind and partially sighted people are being denied their right to vision rehabilitation after sight loss, with more than a quarter (26%) waiting more than a year for support.

Vision rehabilitation can incorporate a number of aspects, including emotional or peer support, alongside more practical training such as how to use mobility aids on a phone.

“Mental health needs to be given equal priority to physical health when supporting people with sight loss. We also need sighted people and employers to be aware of the mental health challenges and the emotional impact people with sight loss face when adjusting to losing their sight, which are often overlooked and under recognised, and to learn how to support them,” Francis said.

The RNIB is emphasising that emotional support should be embedded in all stages of the Eye Care Support pathway.

This would mean upskilling professionals to ensure that every contact point, including diagnosis, is improved, the RNIB said.

The charity also believes that better established peer connections would help to ensure that blind and partially sighted people aren’t left to deal with the emotional impact of sight loss alone.

The RNIB is also calling for vision rehabilitation to be available to everyone who is entitled to it through its #OutOfSight campaign.