Why does sight loss matter?

Many of us will experience sight loss, and many more of us will know someone who has sight loss – as a friend or family member, a colleague, a patient, a client, or someone you meet.

• A 2020 report from the International Agency for the Prevention of Blindness (IAPB) found that 1.1 billion people currently have sight loss globally.
• The Royal National Institute of Blind People (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.

However, people with sight loss are more than just these numbers. We all want to lead fulfilling lives and contribute to society, and people with sight loss are no different.

A person’s experience of sight loss can also be influenced by other disabilities, and vice versa. A report funded by SeeAbility and RNIB in 2011 shows that adults with learning disabilities in the UK are ten times more likely to have a sight problem. Of those, six out of ten will need glasses.

These statistics suggest that many of us will experience sight loss or know someone with it during our lives. This raises several questions. For those of us without sight loss:

• How many of us have thought seriously about the impact losing our sight might have on different aspects of our lives?
• How many of us really know what we can do to support friends and family, patients, colleagues, and clients who have or develop sight loss?
• What about the language we use and how we communicate? Do we consider its impact, including whether it could be a barrier or disempowers people with sight loss?

Living with sight loss

Our aims

In this Toolkit we aim to:

• Gain an understanding of the barriers people with sight loss can experience, and why.
• Understand how adjustments, increased awareness and seeing the person as a whole can help remove many of the barriers faced by people with sight loss.
• Learn accessible and inclusive ways to communicate to ensure that people with sight loss are not excluded.
• Provide information for specific groups – employers, colleagues, healthcare professionals – so they can include people with sight loss.
• Provide information on technology, equipment and other useful resources.
• Provide information and links to organisations specialising in sight loss.

The Toolkit was written by authors based in the UK and so some of it is UK-specific. However, much of the information is relevant wherever you are in the world.

How to use the Toolkit

This Toolkit is for anyone interested in sight loss, and no prior knowledge is required.

You are welcome to read all the sections. However, we realise that this is an extensive Toolkit and that not all sections may be of interest to everyone.

To make finding relevant information more straightforward, we have split the Toolkit into sections to allow you dip in and out of the resources that suit you.

The first two sections contain general information which is relevant to everyone. We recommend beginning with these two sections, and then selecting the specific guidance section that is most relevant to you.

• General guidance 1 introduces key terms and ideas and explains the fundamentals of sight loss.
• General guidance 2 explains how sight loss can affect how a person communicates with others and how others can adapt the ways they communicate to be more inclusive to people with sight loss.

The following four sections are written with specific audiences in mind:

• Specific guidance 1 is aimed at people working in healthcare environments.
• Specific guidance 2 is intended for individuals with sight loss, their families and friends.
• Specific guidance 3 provides guidance for employers who want to recruit and retain employees with sight loss.
• Specific guidance 4 is more relevant to businesses looking to welcome customers and service users with sight loss.

Contributors

This Toolkit could not have been written without the involvement of a diverse team of passionate people and organisations who generously gave their time to attend focus groups, be part of our steering groups, volunteer tips, links, information, case studies and so much more. You will see and hear some of them in our interviews and videos.

They have all shared their personal experiences, insights, and expertise as well as where they feel more vulnerable, be it at a personal or professional level. We have relied on their extensive knowledge, experience, trust, commitment, and passion to develop this Toolkit.

We would like to thank the following groups and individuals for their contributions to this Toolkit:

Steering group

Organisations

• Macular Society
• SeeAbility
• NCBI
• Visibility Scotland
• Vision Foundation
• RNIB
• Sight Scotland Veterans
• Freeney Williams
• Microlink.

Individuals

• Simon Holt
• Sheila Hands
• Stacy Scott
• Michael Smith
• Dr Sarabajaya Kumar
• Darren Rowan
• Richard Wheeler
• Stuart Lawler
• Diana Salmon
• Jane Duffy
• Dr Samer Elsherbiny
• Kim Turnbull.

Focus groups and interviewees

• Darren Rowan
• Kerry Firth
• Michael Smith
• Monica Smith
• Dr Samer Elsherbiny
• Ron Barnett
• Rick Williams
• Simon Holt.

A note on language

Some of the terminology we use may be unfamiliar to some users, and we have included a glossary with this Toolkit. Words and phrases that are included in the glossary will appear as hyperlinks in resources. Click on the hyperlink to go to the glossary, where you can find the word’s definition.

A note on accessibility

All our multimedia resources videos have audio description, and our images have alt text. The podcasts have captions, and our written resources are all accessible to screen readers.

If you do experience any issues with accessibility, please contact us at enquiries@businessdisabilityforum.org.uk to let us know.

Disclaimer: The Sight Loss Toolkit has been commissioned and funded by Roche Products Ltd.

© This Toolkit and the information therein are subject to copyright and remain the property of the Business Disability Forum. It is for reference only and must not be copied or distributed without prior permission.

If you require this Toolkit in a different format, contact enquiries@businessdisabilityforum.org.uk.

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