Business Disability Forum launch new practical guide to sight loss

Today (Wednesday 2 November 2022), Business Disability Forum launches a new resource, providing people with sight loss, healthcare professionals, employers and businesses with a practical guide to sight loss.

The image background is blue with a white circle in the centre. Inside the circe a blue rectangle with rounded edges has the letter 'A GP V' listed, with a black eye to the bottom right. Under the circle, white text reads 'Sight Loss Toolkit'
Credit: Business Disability Forum

Research from IAPB shows that 1.1 billion people have sight loss globally and the RNIB estimates that 250 people start to lose their sight every day in the UK. This is the equivalent of one person every six minutes. Whether a person is born with sight loss or loses it over time it is a life altering experience for the individual and their family and friends. It is essential that these people can access the same healthcare, workplace and other daily settings in the same way as anyone else.

Evidence

Funded by Roche Products Ltd, the new toolkit is based on the findings of a steering group and focus groups with people with sight loss alongside healthcare professions, employers, customer facing businesses and sight loss organisations. The evidence gathered from here groups showed that people with sight loss currently face unnecessary barriers as they negotiate settings including the healthcare system, the workplace and in other day-to-day situations.

Many participants said that the healthcare system is the area of life where they feel the most barriers exists. This is often due to the systems and processes involved which don’t take into account the reality of living with sight loss, or the face that people with sight loss can also experience other health conditions.

“Feedback from our steering group and focus groups showed us that accessing healthcare is a particular issue for people with sight loss,” explains Diane Lightfoot, chief executive at the organisation. “One person spoke about always receiving letters in the post to inform her about her appointments, even though the hospital knows she is blind. We also heard about people attending appointments and taking part in tests for other conditions, where staff were not aware of their sight loss and had not made appropriate adjustments as a result. 

“Everyone was keen to point out that healthcare professionals are always looking to do their best by their patients. The issues that people often face relate to a lack of joined up processes within the system and sight loss specific awareness training.”

“We hope our new sight loss resources will equip healthcare professionals to deliver the best care possible for people with sight loss. We also hope they will provide people with useful and practical advice on how to navigate their sight loss journey, doing the things they choose,” adds Diane.

Resource

The Sight Loss Toolkit aims to help people with sight loss and those around them by addressing common concerns and offering advice on everyday situations. This includes resources on what sight loss is; living with sight loss; accessing the healthcare system; working with sight loss; getting help and information.

The new resource also offers advice and guidance to clinicians, healthcare professionals, employers and business on how to better serve the needs of people with sight loss.

Rick Williams contributed to the toolkit, sharing his own experiences of the healthcare system.

“I always feel like a condition not a person,” reveals Rick. “The system doesn’t seem to think about the user that much and barriers exist throughout. Being told to ask my wife to take a stool sample for me for a bowel cancer screening test which was inaccessible was incredibly dispiriting. I wonder how they would have felt if that was the option they were given by someone on the phone and, of course, it meant I didn’t have a bowel cancer screening test until they redesigned it so I could use it which was many years later.”

While situations like this have happened, Rick has also had positive experiences and believes educational tools can help to remove barriers.

“Not all of my interactions with the NHS have been negative of course but they are the ones that stick in your mind. And it is not just the NHS . . the same issues apply to the private medical sector too,” explains Rick.

“Getting staff to think about the barriers and getting rid of them in advance would be a major step forward as would being more flexible in the way they deal with people; think people not medical conditions would be a major advance.

“The Sight Loss Toolkit provides great insights and throws light on what could be done differently to make this easier,” adds Rick. “Going blind is a traumatic time for both the individual and the family and anything that reduces the trauma and supports engagement with health professionals is great. Helping health professionals to be better at providing support can only be a good thing.”

Created by a diverse team or people with sight loss and organisations, the resource is now available for free on the Business Disability Forum Knowledge Hub.

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