Specific guidance 1: The patient journey for healthcare professionals

Last reviewed: November 2024

Overview

This section of the toolkit is primarily aimed at people who work in healthcare settings of all varieties.

It has been split into sections based on services and settings rather than the more traditional primary and secondary care model. This is due to the large variety of roles and settings within healthcare.

Sections 1-4 have advice for all healthcare professionals; sections 5-7 have targeted advice for professionals in specific specialisms and settings. Section 8 is for people working in ophthalmology as they are the healthcare group who specialise in eyes.

Sight loss training for healthcare professionals

There may be training on looking after people with sight loss in your NHS Trust or through your employer (if you are not in the NHS). There are also online training videos and information factsheets through organisations such as RNIB, covering topics like how to guide a person with sight loss. They also provide advice services.

Other sources often include vison condition-specific organisations such as the Macular Society. Other good sources are organisations that focus on other conditions which can affect vision. Examples include:

• SeeAbility: seeability.org
• MS Society: mssociety.org.uk
• Diabetes UK: diabetes.org.uk.

NHS staff also have access to FutureNHS.

Some organisations use simulation glasses to help teach sighted people about what some people with sight loss can experience. These can be very helpful to some people. It should be noted though that not everyone agrees with this teaching method.

“All I remember of my sight loss training as a student nurse was being led around a building and then fed whilst wearing an eye mask. Insightful but no practical measures. Everything I now know about sight loss I have learnt from patients and other people with sight loss or I’ve gone and learnt myself. For such a common and important disability, it is nowhere near enough. I feel really bad about it.”

• Anonymous respondent

Barriers and needs when accessing healthcare

There are many potential barriers a person with sight loss may encounter when accessing healthcare, many of which start before they arrive at the clinic or hospital. Each person’s experience will be unique. Some common barriers and suggestions to overcome these are given below.

Removing barriers in the medical system

We asked our panel of people with sight loss what barriers they have experienced when accessing the medical system, and how to remove them.

Common barriers

• Inaccessible processes for registering with a GP or dentist.
• Difficulties getting to and from the healthcare setting – for example, they cannot drive, and the area is not well served by public transport.
• Inaccessible websites and links.
• Difficulty completing forms.
• Inaccessible correspondence – for example, letters or emails inviting them to appointments or follow-up correspondence.
• Difficulties completing health screening activities by themselves – for example, reading COVID-19 lateral flow tests, peak flow monitoring, checking for signs of skin cancer
• Being asked for precise details of an unfamiliar location by emergency services – for example, “Can you see any landmarks?”
• Having more than one disability. For example, hearing loss and/or reduced mobility, especially in older people. People with learning disabilities may also face increased barriers.
• A lack of use of recognised symbols indicating disabilities in notes. The use of internationally recognised icons can be a quick way to identify who may need assistance and why.
• They may have unidentified sight loss or it may have deteriorated. If you suspect that someone is not seeing as well expected, then it may be appropriate to arrange an eye and eyesight test. There is an increased risk that people with learning disabilities may experience sight loss, and that their sight loss will go unrecognised.

On arrival at a healthcare facility

• Having to remind staff each time of what assistance they will need and why.
• Access into and out of the building. A buzzer system with lots of different buttons may be in use but difficult to read the names on it.
• Lighting and contrast within the building.
• Unclear buttons in lifts.
• Poor signage.
• A loss of privacy and dignity – for example, requiring patients with sight loss to complete detailed forms at a reception desk in crowded waiting areas and which sighted patients would be able to complete themselves.

The appointment or interaction with the healthcare professionals

• Being expected to follow a person into an appointment room – the patient may not be able to see this person, and this can be even harder if they also have hearing loss or problems with mobility.
• A lack of introductions by attending staff.
• People touching them and carrying out procedures without telling them or asking them beforehand.

Suggestions

• Ask the individual if they need something done differently. They will probably know and their suggestions may help other patients too.
• Ask and learn from your patients and pass that information on so improvements can be made. For example, how easy was it for them to find your department?
• Think through the whole of your patient’s journey to help you identify where there may be barriers.
• Ensure that your website is fully accessible.
• Include details of a person’s access needs on their notes – with the person’s consent. They should only need to give this once or when their needs change. Having a standard symbol will make this quicker and easier to check.
• Encourage additional appointments with healthcare professionals to help with screening procedures that may be difficult.
• Ask and conduct an audit of your premises to identify any areas that may be difficult for individuals with sight loss (and other disabilities) and devise a plan to address any issues. Our ‘Premises accessibility checklist’ lists which areas to assess for accessibility. Ensure that you have contingency plans in the meantime.
• When calling out a name, be aware that the person may have sight loss (and other disabilities) and may not be able to follow you without more time or assistance. If you use a visual system only such as a flashing board, ensure that you also have a working system to ensure that people with sight loss can be identified and given appropriate assistance.
• When completing paperwork, ensure that it is done in an area that is private. The waiting room should not be able to hear.
• During a consultation, it may be useful for you to record a summary on their phone for them to refer to later.
• Ask how they want information to be sent to them. It may be that email is best and in a format that works well with screen readers or other assistive technology. For others, large print using certain fonts and colour combinations may be best.

The experience of sight loss

Sight is one of our main senses and one we usually take for granted, until we lose it. Losing our sight is also frequently said to be the disability people are most frightened of developing.

Understanding the experiences of losing your sight and living with sight loss can help healthcare professionals empathise with patients. This can lead to better care and more thoughtful interactions with patients.

Sight loss as an “invisible” disability

Some people with sight loss have no outward signs of it. Unless someone is walking with a cane or a guide, it can be hard to tell that someone has sight loss – what is sometimes called an “invisible” disability. As we cannot tell what the individual is (or is not) seeing, it can be very difficult to understand what losing your sight is like.

Factors that can influence how a person copes with sight loss:

• speed that sight is lost
• age
• culture and background
• knowing other people who have lost their sight
• peer support networks
• support received, including quality, relevance to their lives, and how quickly and easily they can access that support
• other people’s attitudes and behaviours.

Fear and grief

As busy healthcare professionals, it is easy to forget how stressful being a patient can be. For the individual and their loved ones, healthcare settings are often unfamiliar places. They may associate these places with bad news, pain, loss of control, fear of the future or what may happen, and loss of dignity and privacy.

Receiving a diagnosis that you are losing your sight, that it will not improve, or is happening quicker than expected can be frightening and devastating. Most people will need time and professional support to come to terms with it.

Acknowledge a person’s emotional responses to their diagnosis, its impact on their lives and the anxiety that is often present during appointments. If what they are experiencing is common, tell them – it can be very reassuring. Ask about it and if they wish help.

Even in situations where a person is seeing a healthcare professional for reasons unrelated to their sight loss, there is often apprehension related to it. This is often due to the common barriers that people with sight loss face including:

• lack of privacy
• access to basic facilities such as toilets, a drink or food
• finding their way around
• access to information
• being ignored or forgotten
• being able to access help – for example, access to a buzzer on a ward.

Sight loss and other disabilities and health conditions

When treating a patient for one condition, it can be easy to focus on that condition and not the whole individual, who may have other health conditions that interact in complex ways.

People with sight loss are as likely as anyone else to have another health condition, and many people with sight loss live with multiple ‘co-morbidities’. These other conditions can be frightening and exhausting enough on their own without the addition of sight loss. For example, a person with well-managed macular degeneration may be admitted as an emergency due to a cardiac event. The treatment for their new cardiac condition may accelerate a deterioration in their sight loss. If the staff in the ward are not familiar with looking after patients with sight loss, this can make an already stressful situation even more so.

Some conditions are more likely to trigger sight loss. These include diabetes and multiple sclerosis.  People with learning disabilities have an increased risk of sight loss at any age. Others may be more common with age such as dementia, hearing loss, and reduced mobility. 

It is important to acknowledge and discuss any diagnosis with the individual. They may have had another condition or their sight loss from a young age and need very little assistance or support. Equally, one or more may be a new diagnosis for them.

Communication: Language and behaviours

We communicate in many different ways such as written, verbal, and non-verbal (gestures, stance, visual and tactile).

How successfully we communicate will depend on a number of factors including our methods, the preferences of the person we are communicating with, timing, intentions, tone, and our words and gestures.

For people with sight loss, how we communicate becomes more important as they may not have access to all the same visual cues as sighted people. This section aims to provide practical guidance about communicating with patients with sight loss.

Removing the barriers

Language and behaviour

• Introduce yourself, and what your role is. Introduce anyone else who is with you.
• Think about the words and expressions you use – are they outdated, unnecessarily negative or blaming? Medical terminology can also be confusing and negative. For example, words such as ‘suffering’, or ‘control’, ‘compliant/non-compliant’ may signify more to a patient than they do to a medical professional.
• Try to avoid judgemental language and opinions when talking to the person or when describing their situation to others. For example, ‘he/she advised they are experiencing these symptoms; they have a pre-existing diagnosis of X’. Their symptoms may be due to external factors.
• Asking an individual if there is anything that may be affecting their experience of sight loss, or asking them to describe what they currently do, may make it easier for them to raise concerns.
• Acknowledge a person’s emotional responses to their diagnosis and its impact on their lives. If what they are experiencing is common, tell them – this can be very reassuring. Ask them if they wish information or a specialist referral to help them manage the emotional impact their diagnosis can have.
• Listen to the language the person with sight loss uses. If appropriate, use the same as them. If not, ask them about it.
• Some people with sight loss prefer ‘person first’ language – for example: a ‘person with sight loss’ – rather than a ‘blind person’. It you are unsure what the person prefers, use ‘person first’ initially. Ask the person what they prefer.
• Always try and look at the person with sight loss when you are talking to them. Do not talk to their dog or anybody they have with them
• Pointing and hand gestures may not be useful and can make people feel like they are being scolded.
• Where you stand may make the difference of being seen or not. For example, someone who uses their peripheral vision to see may prefer to stand at an angle to see you.
• Speak and ask people before you touch them. Introduce yourself and tell them what you want/are going to do.
• Ask if they need your help – don’t assume. Listen to what they would like you to do and how.

Methods of communication and information

Ask the individual what format works best – for example, a leaflet in standard format, large print, digital or audio. Having some documents linked to QR codes can be really helpful too. They may want to record key information on their phones. Having a variety of options may also help other people such as those who do not have English as a first language, or who have other health conditions or disabilities.

Instructions for equipment and medication

It can be difficult to identify different medication, the doses and how to take it, if you can’t read the label. Some medications have Braille – but not all – however, not all people with sight loss can read Braille. Giving links to digital resources and QR codes can be useful. Some people may prefer large print with font sizes of at minimum of size 16 sans serif, especially those who are not confident with digital systems.

The same can be true for some pieces of equipment we expect people to read instructions, use, and read results – for example, glucose monitors, peak flow meters, blood pressure monitors, bowel screening kits, and sample bottles.

Ask the person if they have any concerns and if they can suggest any adjustments or alternatives (if appropriate). They may well have some ingenious solutions which you will be able to suggest to others in similar situations.

Collecting and sharing information

Healthcare professional governing bodies have strict requirements and standards regarding preserving patient confidentiality and gaining consent to share information. These requirements do not just refer to clinical notes and telephone calls, but also what happens in a clinical setting.

Key points

• Ask the individual what works for them. For example, do they need someone to meet them at the entrance? Do they need to bring a recording device to appointments to record important information? Offer to work with the person to help identify solutions if they appear to be struggling with something.
• Think about where you are asking people for personal information and having sensitive For example, asking for details about a diagnosis, completing a detailed form, or giving someone test results in a busy reception and waiting area may be seen as inappropriate and upset some patients.
• Most people who need adjustments find that they need to repeat the information for every encounter they have throughout their healthcare journey. This can understandably cause anxiety and frustration for everyone involved. Making it clear what a person needs at the top of a person’s medical notes, referral letters, follow-up letters and similar can ease the pressures for individuals and healthcare professionals alike. Where possible, this should be part of an integrated system. For example, if the appointments team know that Mrs X needs to be met at the facility entrance and guided to the department, that should be automatically arranged when the appointment is being made.
• The use of internationally agreed symbols on notes and correspondence can be a very simple useful cue for staff to see that the person has a disability. They should check for any notes about adjustments and accommodations.
• Make sure to follow all legal and regulatory requirements concerning sharing patient information.
• Ask if you can share information with colleagues to ensure a smooth process. Consent is important and requirements on whether verbal or written consent is needed should be followed.

Advice for healthcare professionals

Below we have created specific guidance for healthcare professionals working in various different areas and specialisms.

Advice for initial responders and emergency healthcare staff

Who is this section for?

• Initial responders – RNLI, Coastguard, First aiders, Police and Fire & Rescue
• Offshore/remote medics
• Ambulance staff and paramedics
• Air ambulance staff
• Minor injury and A&E staff.

Exercise

Visualise a typical emergency situation in your area of work. Now imagine that you are the patient and you cannot see clearly or at all. How does that feel?

Clinical areas are often bright and noisy. If this is your normal workplace it soon becomes normal and it’s easy to forget how alien this can be for patients.

Emergency situations and acute physical and psychological symptoms usually reduce our ability to process information. This is even more likely when we do not have full use of one of our key senses, such as sight or hearing.

Voices, bright lights, sirens, people poking and prodding, moving you and moving around you make this all the more difficult.

Tips for communicating

• Keep sentence structure and questions simple and short as you would with anyone who may be suffering from any degree of shock. This helps as the person may not be able to see you as you think they can, due to their sight loss.
• Talk to them and tell them what is going on all the time, especially if they cannot see what is going on around or behind them. For example, ‘John, I am going to prepare some pain medication. I’m still here and will tell you when I am ready to give it to you.’ Most initial responders are very good at talking to their patients in this way, but it is especially important for people with sight loss.
• Remember to introduce yourself when you arrive, introduce any additional colleagues and other people Ask the person before you touch them.
• Don’t be afraid to ask people what they need you to do to help them. Don’t be afraid to ask about their sight loss. Each person with sight loss is unique and has unique experiences. Asking questions can increase trust, reduce anxiety, and make your job easier.

Guide dogs

Many people receive very little training about guide dogs, and that often includes staff working in healthcare.

Each NHS Trust and Ambulance Service will have its own policy – make sure staff and colleagues are familiar with this. Generally, assistance dogs, including guide dogs, are allowed in all types of ambulance vehicles including air ambulances providing they can travel safely and will not compromise the care being given to the patient. They are also generally permitted in hospitals with the exceptions of areas such as operating theatres, resuscitation rooms and critical care units. The policies should advise on local organisations who can care for the assistance dog in emergencies.

Technology

This is most likely a smart phone. Many people with sight loss will use a phone to enlarge visuals such or to have information read out to them. This piece of equipment is just as important as a guide dog, white cane or other piece of equipment they may have.

Advice for healthcare staff working in a clinic setting

Who is this section for?

• GP medical centres
• Hospital outpatient departments
• Occupational health
• Community settings such as physiotherapists, dentists, chiropodists.

Arranging appointments

For many people with sight loss, appointment times can be challenging. This is because:

• they may not know about the appointment if it was sent in a format they cannot access
• they may need to rely on public transport
• they may have a significant distance to travel, especially if they live in more remote areas
• they may need someone to accompany them
• time restraints for them and anyone accompanying them
• they may require assistance and adjustments to be able to attend their appointment such as provided by ‘meet and assist’ services.

Removing the barriers

If a person, or the person referring them for an appointment, has indicated that assistance or adjustments are required, these should be implemented. If in any doubt about the information, ask the individual.

• Giving information about the appointment early – include what to expect, who they are likely to see, duration (helps with planning travel and travel assistance if required), how and where they can get help to navigate the hospital, clinic etc.
• If you know they have sight loss, ask them if they need assistance, are they bringing someone with them (especially important if there are restrictions such as COVID-19 measures). They may also be a guide dog user and will bring their dog.
• They are the experts in their sight loss and needs – asking the patient what they need is not only useful for you but also helps them and reduces their stress.

Asking for personal information

We often have to give very personal information during a visit to any type of clinic. If a form is required, consider whether it would be better to send it in advance so that the person can complete it electronically. Alternatively, take them somewhere away from the reception desk to complete the form. If you are unsure whether a location is appropriate for a sensitive conversation, consider whether you would feel comfortable if the roles were reversed.

Calling for person in the waiting room

If a person cannot see you, and you call out their name in a waiting room, they may not know where you are or respond, let you know they have heard, or follow you. This is especially true if they also have other disabilities or health conditions such as some hearing loss.

“In my surgery a board flashes up your name and/or a doctor announces you on a speaker and says which room to go to. The receptionist needs to be informed in advance that you can’t see the screen and need assistance to the room.”

• Anonymous respondent

Reception staff should let all patients know about alert systems and have a secondary system in place for people with sight loss.

If you know the person has sight loss, look out for a reaction and go to them when you call their name or know in advance where they are sitting so that you can guide them. If nobody responds, call their name again and give them enough time to make themselves known to a member of staff who can tell them where to go.

Busy waiting rooms often present trip hazards with people’s bags, so be alert and offer to guide someone if you think they might need it.

During the appointment

Introduce yourself and anyone else you have with you. Let them know what you are doing and ask before you touch them, letting them know where and what to expect to feel – for example, “you might feel a small scratch on your inner forearm, is that alright?” Tell patients what you are going to do before you do it.

If you are giving them information, ask them how they prefer to receive information – for example, letting them record it on their phone, have you record a summary, or send letters and information electronically. If they will need to refer to this information later, make sure they have a copy of it in a format they can access – for example, don’t provide information in a written format to someone whose sight loss means they can’t read it. Also consider degrees of sight loss – an individual may be able to read large, clear writing, but struggle with smaller, unclear handwriting.

Don’t be afraid to ask questions about their sight loss and how it affects them. Ask what they need from you.

Leaving the premises

If they needed assistance getting in, they may need assistance getting out and about. For example, they may need help to find the toilets, buy a coffee, see different staff within the clinic area. Let people know what is available and how to get your help if they need it.

Assistance dogs including guide dogs

Many people receive very little training about guide dogs, and that often includes staff working in healthcare.

Each NHS Trust and Ambulance Service will have its own policy – make sure staff and colleagues are familiar with this. Refusing to let a guide dog into a healthcare setting may be unlawful under the Equality Act 2010.

Generally, assistance dogs are permitted into most healthcare facilities with the exceptions of a few key areas such as operating theatres, resuscitation rooms and critical care units. Your local policies should advise on where assistance dogs are allowed, and any adjustments that should be make. It should also detail any local organisations who can care for the assistance dog in emergencies.

Further information on assistance dogs including guide dogs can be found:

• within your local policies
• Assistance Dogs UK.

Advice for inpatient facilities

Who may find this section useful?

• Hospital staff
• Care home staff
• Staff who work in a patient’s home
• Healthcare staff who look after people in other residential facilities such as detention centres, sheltered and assisted living facilities, and prisons.
• Social care staff.

Helping patients with sight loss with orientation

Hospital wards and other inpatient facilities can provide many potential barriers to a person with sight loss that are unique to their environment. For example, without a proper orientation a person may not be able to find the toilets and bathrooms, or their way around the bathrooms to find the shower and how it works – risking accidentally burning themselves. They may collide with equipment that is in the way such as drip stands, commodes, visitor chairs, or laundry baskets.

Orientation is also important at the bed. For example, knowing where their buzzer is to ask for help, and where their water or food is, and where their cane and their phone are. If they use aids such as glasses, magnifiers, assistive technology gadgets, a cane, or any other tool that enables the person to be independent, these should always be within easy reach of the person. It may be that they will benefit from a referral for these.

In many cases, patients are able to go to a hospital cafe or the shop if they wish and are able. This should also be the case for patients with sight loss. Tell patients with sight loss how they can find their way there, and how they can ask for someone to take them there if they don’t feel confident in finding their own way.

Menus and meals

Food is usually very important to inpatients. Some patients will need staff to take time and care to read out the options, and others will use their smart phone to have the menu read out to them in their own time but may need help ticking the boxes. Ask the patient if they need any support, and if so what you can do to help.

Assistance dogs

A person may have their assistance dog with them. This is often important for them to remain independent during their inpatient stay, especially in residential facilities where the person is able to have a significant degree of independence both inside and out.

Guidance on assistance, including guide dogs, should be available in local policies.

Isolation and loneliness

There is an increased risk of people with sight loss feeling isolated, lonely, and ignored as an inpatient. This is especially true if they are in a side room to enable them to have their assistance dog with them or they have headphones on. Involving the person in conversation or activities is important. For example, they may not be able to see the TV well, but may still enjoy the movie or want to watch the news with audio description with other people.

Our clothes usually reflect our personalities and are an important part of our identity. This is no different if you have sight loss. A person with sight loss may require some help in choosing clothes, applying make-up and other aspects of personal care. It is important to discuss their needs and wishes with them.

Long-term care

In long-term inpatient care, facilities may still require outpatient appointments to monitor their sight loss and any other health conditions and disabilities they may have. Arranging transport and appropriate assistance is crucial, especially if they have a guide dog.

A person’s sight may deteriorate with age during their inpatient stay, and discussing this with them and any adjustments they may require is important. For example, if they are receiving inpatient care or care in their own home for an unrelated condition and they start to lose their sight or it deteriorates, they will likely have the same fears and emotions as people not in long-term care.

People with sight loss enjoy many social activities and hobbies along with their friends and family. This is just as important in long-term care. Participating in all activities should be offered to a person with sight loss – if necessary, ask if they need support or adjustments to participate.

Advice for staff in ophthalmology

Training

Accessing appropriate training can be difficult, but all staff in working in ophthalmology should have completed at least a basic awareness course and be able competently guide a patient correctly, for example. Most staff will require additional training and the level will be dependent on their role.

Some training can be completed online, whereas others require supervision. Some are accredited and others are not, for example, that provided through Allied Healthcare Professionals in Ophthalmology.

Pre-consultation checks

It is common practice to carry out some basic checks prior to a patient seeing their doctor. However – make sure you only conduct checks that are relevant to the patient.

Often these are carried out on all patients regardless of need. A frequent request from patients is that they are only asked to carry out relevant checks. For example, being asked to read an eye chart when they have no discernible vision can be humiliating, especially if staff do not believe they cannot see the chart.

Sharing your expertise

Passing on your skills and knowledge to healthcare professionals in other areas can be very helpful. You can do this in several ways such as:

• Giving links to helpful information sites on conditions, or sharing ‘how to…’ guides. This may be as links, leaflets, or other formats.
• When referring or transferring a patient, ensure that the receiving healthcare professional has relevant information on the needs and adjustments for that patient. For example, putting person-specific requirements at the top of the notes in a very visible way as well as directing staff to where they can find useful information.

Communicating with patients

It’s important to communicate with patients prior to and after a visit. Patients need to know key information to prepare them for appointments and to help them find support afterwards. For example:

• an overview of what to expect at a consultation – this can reduce anxiety and make consultations more productive for patients and clinicians
• do they need to bring anything specific? For example, glasses?
• do they need to bring someone? This can be especially important if they are going to be getting treatment that temporarily affects their vision
• duration – especially if they are relying on public transport or patient transport, or need someone with them
• where can they go for help and support – for example, ECLO, local council, sight loss charities, specialist counselling, peer support groups, websites.

The information should be available in different format such as large print leaflets, online (supply links) so they can use assistive technology and/or smart phones to access it. Ask patients about their communication needs and preferences and make sure these are followed when communicating with them.

Some ophthalmology departments and hospitals have a policy that, as a minimum, all appointment letters are sent out in size 16-18 sans serif font.  This will help many people with low vision and may reduce missed appointments.

This could be especially helpful to patients and staff if used in conjunction with a standard accessibility symbol in a person’s notes. This will inform staff when they should send an electronic copy or leave a voice message for a patient.

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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