Specific guidance 2: The individual’s journey

Last reviewed: November 2024

Introduction

Everyone’s experience of sight loss is unique. Some people are born with it, some developing it later in life – for any number of reasons. Whatever your circumstances, you live and need to navigate life in a predominantly sighted world.

This section looks at how individuals with sight loss might experience everyday activities, such as work, education, transport, and shopping. We identify common barriers you can experience in these settings and suggest ways of removing them or reducing them.

Advice for people with sight loss

We spoke to some people who have sight loss about advice they have for people who are learning to live with sight loss.

Advice for friends, families and colleagues of people with sight loss

We also asked what advice our panel of people with sight loss have for the friends, families and colleagues of people with sight loss.

Protecting your mental health and wellbeing 

It is often said that sight is the sense that most people fear losing most. However, the fear is often worse than reality.

When we asked people with sight loss about this, they replied:

• “Own it, embrace it early”
• “It’s going to be ok”
• “The biggest barriers are often the ones in our heads.”

Being given a potentially life-changing diagnosis can be difficult to process and accept – for you and the people who care about you. This is a normal reaction, and each person will process it in their own way and in their own time. We often refer to this as ‘the grieving process’ – a series of events that usually includes shock, anger, denial, bargaining, depression and acceptance. Not everyone will experience every stage and there is no set order. Some people will go through parts of it several times before finally reaching acceptance.

People often find they appear to cope well initially as they are kept busy with the practicalities of their diagnosis. It is common for many individuals to be suddenly hit with the reality of what is happening to them a few months or even years later. Again, this is a normal reaction.

If you are worried about how you are coping emotionally with your sight loss, there are several avenues who can help you including:

• your GP
• eye clinic teams such as Eye Clinic Liaison Officers (ECLO)
• peer support groups
• charities specialising in sight and those specialising in mental health such as MIND
• specialist counselling services
• talking therapies via your Employee Assistance Programme
• social care support via your local council or health service.

Those close to you may find it difficult to accept your sight loss. This is usually due to how much they care about you and want to protect you. They will need to process this in their own time and that may be different from you. They may also benefit from talking therapies and should speak to their GP or maybe they can access counselling though their work’s Employee Assistance Programme.

Your physical health is just as important as your mental health, and steps you take to protect your physical health can also promote good mental health. Having a healthy diet, good sleep routine, and being active are key components to protecting your mental health. In addition to your local sports centre being able to support you, you may find that your rehabilitation team, peer support groups, and local charities can help you find ways to stay active and safe in a way that you enjoy.

What kind of help can I expect?

• Talking therapies for anxiety, depression and post-traumatic stress disorder (PTSD) and medication if required. There are a range of therapies that may be helpful.
• Mentoring and coaching to help rebuild your confidence and sustain a healthy diet and lifestyle.
• Hearing from other people with sight loss who understand and can listen and give advice.
• Help to find new hobbies or ways to continue old ones such as physical activity, art, music groups, and meditation. Regular fun social interaction is key to good mental health.
• Access to rehabilitation services which can help you regain your self-confidence and design a programme and support for you.

If in doubt, ask for help early. For most of us, the earlier we learn about what is involved, what help is available, and start taking responsibility and control back, the easier it is to adapt to our new reality.

See ‘Accessing help and information’ below for more information about where you can go for help.

Accessing help and information

Knowing where to look for help and information can be daunting – there are lots of organisations and groups out there, so how do you know where to begin?

In this section, we break down the different sources, and the help and information available from each one.

Eye specialists

Start with the people who give you the diagnosis. This is usually an ophthalmology department. They should be able to give you information in a format that works for you. For example: large print leaflets, digital resources compatible with smart phones and other IT devices.

Eye Clinic Liaison Officer (ECLO)

You may be referred to an ECLO by healthcare professionals in the clinic. You can also ask to see an ECLO independently.

The role of an ECLO is to provide dedicated individual care and information. They are specially trained and can make referrals to relevant services on your behalf. With your consent, they can also talk to people on your behalf such as friends, families and carers.

ECLOs can advise on issues such as:

• welfare benefits you may be entitled to
• how to register as blind or partially sighted and the benefits of doing so
• specific voluntary organisations and peer support groups
• discuss various eye conditions and their treatments
• work concerns you may have
• mental health and wellbeing.

Charities

There are many charities specialising in sight loss, each with their own focus. For example, RNIB covers sight loss generally. Others, such as the Macular Society, concentrate on specific eye conditions. Some charities focus on specific groups of people, for example, Sight Scotland Veterans. Others focus on conditions that are associated with sight loss, such as Diabetes UK.

All the charities provide a wide range of advice and support to people including individuals, families and friends, colleagues, education and employers. Many will also have peer support groups which can be invaluable to many people with sight loss and those closest to them.

Peer support groups and workplace staff networks

These can be incredibly useful and supportive groups to people with sight loss. Hearing from other people who have ‘lived’ experience and who can share their stories, tips and tricks, support and understanding are often considered key to accepting and succeeding with their sight loss by many.

Local authorities

If you are given a Certificate of Visual Impairment (CVI) by the Eye Clinic you will be able to register with your local authority. They can then advise and support you to access a range of support, services, benefits and concessions.

See ‘Sight loss and the law’ below for more information.

Talking about sight loss

There is no list of ‘dos and don’ts’ to remember when talking to others about your sight loss. What works when talking to one person or group of people in a specific situation may not work in other circumstances. And, of course, you need to talk in a way that you’re comfortable with – which will be different from person to person.

Here are some considerations when talking to different groups about your sight loss.

Speaking to family and friends

How do you tell family and friends that you have sight loss or are losing your sight? There is no right or wrong way. What works for one person will not work for another.

These conversations are understandably potentially very emotional and difficult ones to have for both you and the people you are telling.

Feedback from our focus groups with people who have been there showed a range of preferences. Some told people themselves in a very factual way; others asked healthcare professionals to tell and discuss it with family and loved ones.

People will respond and react to your news in different ways and not always as you expect. Some may even be in denial about it initially – this is often a protective mechanism and doesn’t mean that they don’t believe you.

Asking for help, support and adjustments

Living with sight loss in a world that was largely designed by and for sighted people means that sometimes you need to ask for help or for things to be done differently.

Most people like to be asked and to help others – it makes us feel good.

However, asking for help can be much more difficult as it can lead to feelings of vulnerability and loss of independence. This is normal, but it is worth overcoming these feelings and asking for help. Most people will be very happy to help and will not think any less of you for asking.

Here are some tips about how to ask for help, support and adjustments.

Having the conversation

When asking for help:

• Be specific about what help or adjustments you want and how you want them.
• Being polite, calm and looking towards the person can help – just as you would when asking for help with things unrelated to your sight loss.
• If in doubt, think how you would want someone to ask you for help and use that as your guide.
• If someone refuses, thank them and ask someone else. They may have a very valid reason for not being able to help you at that time.

Setting boundaries and declining offers of help

People generally love to help other people. At times though, it can be a bit overbearing and unwelcome – don’t feel obliged to accept all offers of help out of politeness or embarrassment.

The advice from our focus group was:

• Be polite when declining help
• Be confident in setting boundaries, declining, or asking for different help.

When offering help to a person with sight loss

• Ask if they would like any help.
• Do not assume that you know what they want or need.
• Do not touch the person or their belongings without their consent. Ask first, otherwise you may give them a fright or make them feel uncomfortable.
• If you are asking a stranger, say who you are.
• Don’t be offended if they refuse your help.

Raising the topic of poor language and communication choices and usage by other people

Nobody is perfect and we will all make mistakes or use outdated and inappropriate language at times without realising. This can be due to our age, cultural norms, lack of awareness and sometimes it will come from the fear of trying not to say the wrong thing, or not finding the right words. Very few people intend to be rude and offend.

• Start by looking at the person’s intention rather than the words they have used. Is the person wanting to insult and offend? You can usually tell by their manner and the tone of their voice.
• Act confidently and in a friendly manner. Treat them as you would want to be corrected. A bit of humour can also ease the tension. The following examples may be useful starters:
  • ‘That phrase or belief is a bit outdated. Do you mean xxxx?’
  • ‘I prefer the term/phrase xxx as it better reflects …’

If someone keeps using poor language you may need to take a stronger approach. How you do that will depend on where you are – at work, with family, with strangers, etc. Useful phrases may include:

• ‘I’m sure you don’t mean to offend, but I find that language is really insulting/inappropriate’
• ‘I have already politely told you that I find your way of speaking to/about me inappropriate. Why do you continue to do it?’
• ‘You continue to use inappropriate language and I am left with no choice but to raise this with your manager’.
• If it is a stranger – walk away and/or ask for support from people around you.

People ignoring you

Some people will speak to anyone but you. This is usually through anxiety or embarrassment. You may find it best to deal with this head on with a comment such as:

• ‘Please look and talk directly to me – my cane/dog/companion is not able to speak for me’.

Putting some humour into it can often help the first time you need to say anything.

Lack of eye contact

There are people who find it difficult to make eye contact or look at people when they talk to them. There are many different reasons for this such as extreme shyness, and for others it is a way for them to control distractions and overwhelm, or difficulty hearing. The person may also have sight loss which affects them differently from you. For example, some people can only see if using their peripheral vision. Looking away is a coping strategy for many people and is not in any way about you.

For these reasons, it may be best to ignore a lack of eye contact – it could easily be explained by a number of reasons, and doesn’t necessarily mean the person is ignoring you.

Accessing the healthcare system 

Navigating the healthcare system doesn’t need to be daunting if you understand how to ask for support and adjustments when you need them. There are plenty of adjustments that can help you access the healthcare system more easily.

Your medical notes

Your medical notes are not routinely shared with other healthcare professionals. In the UK, there are differences between the devolved healthcare systems as to the amount of information shared – but it is often not as much as people think.

What does this mean?

Your GP will not automatically be able to access the notes from the Eye Clinic and vice versa. Any adjustments you need will have to be sent as part of a referral or requested by you.

Requesting adjustments and assistance

Ask – if you need help to access any part of the healthcare system there should be a way of requesting it.

Exactly how will depend on which part of the healthcare system you need adjustments to access, and the nature of the adjustments. For example, to make sure your GP’s surgery knows to make an auditory announcement when it’s time for your appointment, you may need to contact reception.

The NHS has advice for patients and healthcare professionals about reasonable adjustments on its website.

Suggested adjustments

• Having forms, appointment and follow-up letters and information leaflets sent electronically in advance so that they can be read using assistive technology
• If you are completing forms in a health centre, ask that it can be done somewhere private so the waiting room can’t hear
• Having information sent in large print, Braille, phone call, or voice recordings
• Discussing with your local pharmacy the different ways available to enable you to know your different medications and how and when to use them
• Having someone meet you at the entrance to guide you to where you need to go
• Ask that someone collects you from the waiting room and doesn’t just shout out your name and expect you to be able to see them and follow
• Ask them to show you where the toilets, water fountain etc are so you can access them if you want to
• If you are an in-patient, ask to be shown around, and where your buzzer, water etc are
• Ask people to introduce themselves as they approach you and who is with them
• Ask them to constantly tell you what they are doing
• If you need help to carry out routine screening procedures such as taking your blood pressure at home, ask if there are any voice activated ones or if there is someone who can help you
• If you are being referred to another healthcare professional or service, ask that your adjustments are included in the referral

If you have been given a lot of information during your appointment, ask if the person can record a summary for you on your phone.

Sight loss and the law

People with sight loss have protections against discrimination and unfavourable treatment under the law. People with sight loss can also be entitled to financial support and other help under the law.

Registering as vision impaired

Some people with sight loss are able to register as vision impaired with their local authority. This can allow you to access support and receive financial assistance.

To do this, you need to receive a Certificate of Visual Impairment (CVI). This certificate is issued by the Eye Clinic to formally certifies someone as sight impaired or severely sight impaired. It enables the individual to register with their local authority who will contact them to explain the benefits of registration what additional services they can access.

After receiving a CVI, you are legally entitled to be able to access vision rehabilitation through your local authority. RNIB has more advice about this on their website.

There are approximately five registrations per 1,000 people in England. As of 31 March 2020, this equates to 276, 690 registrations.

The Equality Act 2010

The Equality Act 2010 is UK legislation that protects various groups from discrimination and unfavourable treatment. Disability is one of the ‘protected characteristics’ that the Equality Act specifies.

The Equality Act states that holders of a CVI are automatically considered to be disabled.

The Equality Act applies across Great Britain (England, Scotland and Wales). In Northern Ireland, the legislation is the Disability Discrimination Act which is very similar to the Equality Act.

Discrimination

Under the Equality Act, disabled people – including people with sight loss – are protected from discrimination in certain circumstances.

There are several different types of disability discrimination:

• direct discrimination
• discrimination arising out of a disability
• indirect discrimination
• harassment
• victimisation
• failure to make reasonable adjustments.

See our resource ‘Types of disability discrimination’ for more information.

RNIB has advice about what to do if you think you’ve been discriminated against. See their ‘Challenging discrimination toolkit‘ for more information.

Reasonable adjustments

The Equality Act requires employers and service providers and providers of public functions “to make ‘reasonable adjustments’ if the disabled person has been put at a substantial disadvantage by a ‘provision, criterion or practice’ (PCP) imposed by the employer compared to someone who is not disabled.”

If an adjustment is ‘reasonable’, then it can be unlawful for an employer to fail to implement it. For advice about how to decide what is ‘reasonable’, see our resource ‘What is ‘reasonable’?’.

Driver and Vehicle Licensing Agency (DVLA)

There are legal requirements covering driving and sight loss. The DVLA requires you to inform them of certain conditions that may affect your ability to drive safely. See Gov.uk for advice about sight loss and driving.

You can be fined if you do not disclose certain conditions.

Having some sight loss does not necessarily mean that you cannot drive. The DVLA has guidance on this and has specially trained doctors to assess if you are fit to continue driving.

Health and Safety

With the right adjustments and support, most people with sight loss will be able to do most jobs without presenting a health and safety risk.

There are a few jobs that require a certain level of vision ability – for example, the UK’s Civil Aviation Authority has strict criteria for pilots. Occasionally, some jobs may require employees to perform tasks that it may be unsafe for a person with sight loss to do – such as driving or operating certain machinery. Some jobs may require employees to tell them if they do develop sight loss.

However, in most situations, employers can manage potential health and safety risks by working with the individual to identify the right adjustments. This can range from providing assistive technology, extra training, assigning some tasks to other roles, or redeploying the employee to another role.

If you are concerned about how your sight loss may affect health and safety at work, talk to your manager.

Education 

This section concentrates on education for people over the age of 16 in the UK. For students with disabilities, including those with sight loss, support and funding is available. There are similar support systems in place in other countries.

There are different processes and contacts for this depending on where you live in the UK and what type of educational setting you are applying for. Therefore, it’s best to contact the individual educational establishment for advice about adjustments and other support.

For example, students planning to study at university should contact the Student Disability Service (SDS) at the University of their choice. The SDS can advise students what adjustments may be available, how to arrange an assessment and access funding through the Disabled Student Allowance.

Common adjustments in education for people with sight loss

• IT equipment such as laptops, software, CCTV, magnifiers
• Screen readers, recording penswhich read text aloud
• Scribes, readers, proof-readers
• Extra time for exams
• Ensure accessible teaching rooms
• Class notes and text in accessible formats – this includes audible books through a specialist library service for academic texts.

Work and sight loss

This section contains guidance about how to decide whether to tell your employer about your sight loss, how to work out what adjustments you need at work, and what support is available to identify and fund adjustments.

Should I tell my employer about my sight loss?

This is a personal decision. Unless you are legally required to tell your employer about sight loss (for example, if you are a pilot or HGV driver) or face health and safety risks carrying out your job with sight loss, it is up to you to decide whether you want your employer to know about your sight loss.

However, if you feel that you need support or adjustments at work, you may have to tell your employer. Your employer has a legal duty to make reasonable adjustments if you have a disability (see ‘Sight loss and the law’ above). If you don’t tell them that you have some sight loss, they will be unaware of the barriers you are facing.

By telling your manager that you have sight loss, you should, in most cases, be able to have appropriate adjustments put in place. The adjustments should remove barriers and enable you to perform the role which you were hired to do.

It is likely that you will be able to carry out all or most of the tasks you used to do, as long as you have the right adjustments in place. Where adjustments are not able to be put in place, your employer has to consider other options. For example, if you were in a role which you are no longer legally allowed to do (for example, as a driver), you may be offered retraining to carry out a different role within your organisation.

When should I tell my employer?

This is up to you unless there are safety and legal requirements that dictate when to do this.

If you are applying for a job or new role, you may want to ask for adjustments early during the recruitment process. Legally, at this time employers can only ask about adjustments to the recruitment process – so you will have to ask about adjustments you need in the role after they have made the job offer.

Many organisations have an anonymous form for collecting data on disabilities. Your manager is unlikely to see this – and data should be anonymised – so they will probably be unaware that you have ‘told’ the organisation about your sight loss. You will need to tell them separately.

If you are in post already, then it is best to arrange a meeting with your manager at a time and place where you will not be disturbed and with no interruptions. Ideally you would give them some indication of what you want to raise in the meeting. This gives them time to gather relevant information and check how they may best support you.

What should I tell my employer?

You do not need to give detailed medical information. It is helpful if you can tell them that you have sight loss and a brief description of how it affects you, but it is your decision. A good rule of thumb is to think about what you would need to know to help someone if you were a manager.

You should use the meeting to advise them of the barriers you are facing, any concerns about work you have and any suggestions as to how to remove them. For example, you may find the lighting where you work difficult and a move to somewhere that has more natural light would suit you better.

What adjustments do I need?

You may feel confident that you know what adjustments you need – perhaps you have had sight loss for a long time. On the other hand, if you have only recently developed sight loss, you may not know what you need. In either case, your employer may need to work with a range of teams and individuals (such as you, HR, Occupational Health, and others) to identify what adjustments will be most effective for you and your role.

What adjustments you need will depend on the nature of your role, your sight loss, the organisation, and a number of other factors.

Your manager may be able to authorise some adjustments straight away. These might include:

• time off for appointments relating to your vision
• flexibility on start and finish times to allow for a change in travel arrangements
• access to some software and time for training on it.

They may need to ask their manager or HR teams for funding for more expensive items or access to a central fund. Ask your manager to provide an estimate of how long it will take, and to keep you updated about how it is progressing.

Any adjustments should be reviewed on a regular basis to ensure that they are working for you and if you need any further support.

If you have recently developed sight loss, you may benefit from expert advice about how you can manage it in your workplace. You could ask your manager for a workplace assessment that could look at how you work and suggest adjustments that could help remove or reduce barriers.

If your employer is unable to carry out a workplace assessment, RNIB or Access to Work can carry them out instead. See ‘Access to Work’ below for more information about workplace assessments.

Access to Work

You and your manager may wish to contact Access to Work (AtW) to arrange a workplace assessment to establish what you might need. AtW requires that employees make applications, rather than employers – but you can ask your employer for support in making the application. AtW is able to fund some adjustments but it best to discuss this direct with them.

As well as advising on adjustments and possibly funding them, AtW may also fund sight loss training for the team.

You are not expected to pay for any adjustments that you require to carry out your role.

Health and safety

Every employer has a duty of care to ensure the safety of their employees. This includes safe evacuation during an emergency. Depending on the severity of your sight loss, where you work and other safety considerations, you may require a Personal Emergency Evacuation Plan (PEEP). This is personalised for you and your needs. It may be as simple as advising that you evacuate a building with a colleague.

Workplace training

Most of us have ongoing training in our jobs. If you need adjustments, you should be able to advise the trainer beforehand. The more specific you can be about what you need, the easier it will be for the trainer. For example, you could ask them to send the slides to you electronically so that you can view them on your computer with any assistive software you use. It is best to give the trainer as much time to implement your adjustments as possible and to give them contact details so you can discuss anything they are unsure of.

Retail and hospitality

What barriers are there to enjoying retail and hospitality experiences as a consumer with sight loss? And what can you do to reduce or overcome these barriers?

Retail

These days we mostly have a choice of shopping in-store or online. Both can have their pros and cons for people with sight loss.

Businesses providing goods and services are required to make adjustments for disabled customers. If you feel that your experience could be improved with some adjustments, don’t be afraid to ask a member of staff or contact customer support. You can also ask for adjustments to be made before you arrive.

Some potential barriers

• Websites may not be fully accessible
• Security features (such as Captchas) may create barriers on websites
• Lighting and colour contrast in stores may be difficult for some people with sight loss
• Product labels can use a small font and or poor colour contrast, making them hard to read
• Signage may not be easy to read.

Removing the barriers

• Have someone meet you and take you around the store (apps such as WelcoMe enable this)
• Ask for assistance – you may wish to contact them ahead of time
• Smart phones can be useful for reading labels
• Contactless payments can make paying much easier
• Check the website before you go so you know what to look and ask for.

Hospitality

Eating out, staying away from home, going to events can all be great fun but also may cause barriers for people with sight loss.

Hospitality providers have a duty to provide adjustments and do things differently for disabled visitors. You may need to get in touch in advance to ask for certain things, for example to ask for someone to meet you when you arrive.

Some potential barriers

• Getting into, around, and out of the building
• Lighting and colour contrasts
• Accessing rooms
• Reading the menu
• Finding your food on the plate
• Knowing which is the appropriate toilet to use.

Removing the barriers

• Check the website or talk to the venue before booking
• Ask for someone to meet you at the entrance and to guide you during your stay if required
• Smart phones can read out or magnify menus, check bills
• Use apps to check accessibility before you go – for example AccessAble and WelcoMe
• If you have ordered room service, put the room light on before it arrives so the person delivering it can see where they should put it
• Ask for the lemon and butter in foil to be placed in separate dishes to avoid the embarrassment of trying to eat them by mistake.
• Ask for someone to guide you around the buffet and fill your plate.

Transport

This section looks at the four main transport systems in the UK:

• trains (including trams and undergrounds)
• planes
• buses
• taxis.

Each have their benefits and potential barriers for people with sight loss. Transport companies usually provide their staff with training in sight loss and so they should be able to guide you and advise you correctly.

Potential barriers

• Knowing where to go in stations and airports
• Knowing which stop to get off
• Toilets on planes and trains due to issues like not knowing where if the door is properly locked, or what the various buttons are for.
• Trip hazards from people’s luggage and feet sticking out into the aisles.
• Accessing the buffet car
• Luggage plus guide dog or cane.

 Potential solutions

• Most airports and airlines and train services have a ‘meet and assist’ service. They usually need you to book in advance.
• Many bus and train services have voice over apps which can tell you where you are and when you are due to get off. They also have maps on their apps and usually have large print paper maps too.
• Many trains have a mixture of toilets with the older slide-lock often being a preferred option for many people with sight loss. Ask the train staff where these are located. Braille is also on many train features.
• Ask for a seat near the doors and toilets.
• Some trains now provide table service in standard class from the buffet car. Use a smart phone to access the menu and pay from your seat.
• Staff should be able to help you find your seat and help you with your luggage for all transport systems. Guide dogs are allowed in the cabins on most planes and on trains, buses and taxis.
• Airlines allow two items of mobility equipment free of charge in addition to your standard luggage allowance.

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

Material Number (M-GB-00018540)

Date of preparation: November 2024