Equal access to

healthcare
The importance of accessible healthcare
services for people who are deafblind

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Executive Summary
Deafblindness in the healthcare context
Why does accessibility matter?
Challenges to accessing information
Barriers to effective communication
Mobility
The Accessible Information Standard
Conclusion

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Introduction
At some point in our lives we will all need to access the healthcare
system; whether through our GP, pharmacist, other healthcare
professionals (such as physiotherapists) or specialist teams based in
hospitals. From minor ailments to acute and specialist services,
healthcare is vital for the health of our nation – with over 1 million
patients being seen by the NHS in England every 36 hours i. From its
inception in 1948, the NHS has had at its heart the principle that it
should meet the needs of everyone; something which is reflected in the
NHS Constitution today:

Principle 1: The NHS provides a comprehensive service, available to

all…it has a duty to each and every individual that it serves and must
respect their human rights. At the same time, it has a wider social duty to
promote equality through the services it provides and to pay particular
attention to groups or sections of society where improvements in health
and life expectancy are not keeping pace with the rest of the population. ii

Previous research has suggested that people who are deafblind were
not getting equitable access to treatment from healthcare services,
contrary to the commitment from the NHS to provide this. This report:

 Examines whether services for people who are deafblind and their
families have improved
 Describes what should make up an accessible service
 Shows how accessible services impact on people’s lives
 Highlights good practice – and identifies where action is needed.

Methodology

This report is the result of an extensive literature review, focus groups,

in-depth interviews with people who are deafblind and their families and
analysis of national data.

We would particularly like to thank those who have given their time to
share their personal experiences with us to help shape this report.

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Executive summary
We will all use healthcare services at some point in our lives. There are
358,000 people in the UK who have a sight and hearing impairment and
are therefore described as ‘deafblind’. Deafblindness can create
difficulties with accessing information, communication and mobility – all
of which can impact on how someone accesses a healthcare service.

The content in this report was informed by the direct experiences of

people who are deafblind, and their families. They raised a number of
challenges in accessing healthcare and the impacts that this can have:

 Access to information: Information is a key part of healthcare; from

appointment letters to information about conditions and services
that are available, access to information is essential to making
informed decisions. People who are deafblind may need
information provided in a different format, such as braille, large
print or in audio. Having information provided in a format that is
inaccessible can lead to missed appointments, not understanding
how to manage a health condition, reduced privacy and lack of
confidence in managing a health condition.

 Communication: From initial booking all the way through to

attending an appointment, accessible and effective communication
is essential. People who are deafblind and communicate using
methods other than clear speech may need an interpreter; others
may simply need staff to use good communication tactics for face
to face communication. Poor or inadequate communication (such
as an interpreter not being provided) can lead to missed
opportunities for care, misunderstanding of needs, inappropriate
pressure on family members, loss of privacy and more.

 Mobility: Being deafblind can impact not only on how someone

gets to a healthcare service, but also how they find their way
around the building on arrival. Other aspects such as checking in
for an appointment and waiting to be called can also be
challenging.

There are many steps that healthcare providers could (and do) take to
make their services more accessible – including assessing the physical
environment, using good communication tactics, and making their
documents accessible. These are often low cost, sometimes free, and

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high in benefit. Unfortunately these are not consistently implemented
and lead to breakdowns of communication and trust between people
who are deafblind and healthcare services.

The Accessible Information Standardiii sets out what health and social
care providers must do in order to identify, record and meet the
information and communication needs of those who use their services.
This is a significant step in terms of improving accessibility of services
for people who are deafblind.

Healthcare providers must ensure they meet their duties with regards to
accessibility, thus removing the undue pressure on people who are
deafblind and their families, who have historically had to bear the
responsibility for communication support and accessible information.

Whilst a number of barriers and challenges were highlighted, the key

message that came through was that if healthcare services were
accessible, people who are deafblind would be able to be active,
independent participants in their own health and care.

Recommendations

Commissioners should:
 Ensure that services they commission are meeting their duties
under The Accessible Information Standard and consider the wider
accessibility needs for people who are deafblind
 Ensure that any consultation with the public is accessible and
involves people who are deafblind.

Healthcare services should:

 Meet their duties under The Accessible Information Standard
 Ensure that all professionals and staff have undergone basic
deafblind awareness training
 Consider how to make their services more accessible in terms of
the physical environment
 Involve people who are deafblind in service development and
design to ensure their needs are met.

Healthcare professionals should:

 Be aware of the steps they need to take in relation to
implementation of The Accessible Information Standard

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  Ensure individuals are fully aware of the nature of their condition,
treatment, and on-going care
 Involve people who are deafblind in every element of their
healthcare.

Deafblindness in the healthcare context

Deafblindness is a “combined sight and hearing impairment [which]

causes difficulties with communication, access to information and
mobility”iv. There are approximately 358,000 deafblind people in the UK;
222,000 aged 70 or over, 115,000 aged 20-69 and 22,000 children
under the age of 19v.

Deafblindness can be present from birth (congenital) or develop at any

age after birth (acquired). Some people will have no hearing or vision,
but most will have some sight and/or hearing that they can use.

There are many causes of deafblindness including old age, infections

during pregnancy, accidents or illness. Deafblindness is also associated
with a number of syndromes, for example CHARGE vior Usher
syndromevii. It is important to note that many people do not identify or
describe themselves as ‘deafblind’ This is particularly true of older
people who lose their sight and hearing as they get older.

Which healthcare services are used by people who are deafblind?

While many people who are deafblind will use healthcare services
relevant to their sensory impairment (for example an audiologist or
ophthalmologist) many also access healthcare services related to other
health conditions. In 2012, the Chief Medical Officer’s Report said that
69% of people with sight and hearing impairment had two or more
additional long term conditionsviii.

Sense’s analysis of the data from the GP Patient Survey ix also suggests
a higher prevalence of additional health conditions including Alzheimer’s,
angina or long term heart problems, diabetes, kidney or liver disease
and long term neurological conditions.x This means that people who are
deafblind will need to access a wide range of services not just those
related to their sensory impairments.

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“If healthcare was accessible…My confidence would grow”

Responses to the GP Patient Survey show that almost twice as many

people (10%) with sight and hearing impairment reported a long term
mental health condition than in the general population. In addition, 61%
of people with sight and hearing impairment reported symptoms of
anxiety and depressionxi, compared with 31% of people from the general
population.

This means that all healthcare services need to be accessible to people

who are deafblind.

There are over 1 million people with learning disabilities in England xii.
Prevalence of hearing and sight loss is much higher for those with
learning disabilities. For example, people with a learning disability are
ten times more likely to have a serious sight problem, and 60% of people
with a learning disability will need to wear glasses xiii. Services which
support people with learning disabilities need to ensure that they are
also aware of any potential sensory impairments, – and make
adjustments accordingly.

Additional long term conditions

Respondents to the GP Patient Survey who identified as being deafblind

(selecting ‘blindness or severe visual impairment’ AND ‘deafness or
severe hearing impairment’) also reported high levels of additional long
term conditions:

 12.2% Alzheimer’s
 28.3% angina or long-term heart problem
 50.5% arthritis or long-term chest problem
 23.6% diabetes
 43.9% high blood pressure
 12.1% kidney or liver disease
 9.6% long term mental health problem
 10.3% long term neurological problem

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Why does accessibility matter?

If services are not accessible they will not be able to meet people’s
needs. This may mean that people fail to seek treatment and their health
care needs and treatment options will not be understood. It can also lead
to poor patient/clinician relationships and lack of confidence in services
and individuals.

“I know that when Mum lived on her own, several miles away from me,
she would only seek medical help when things were really bad”

“If he didn’t have support, he would not access medical facilities. He

often doesn’t tell people till things are quite late”

Inaccessible services have also been found to be more costly in financial

terms. SignHealth state that lack of appropriate information and
communication support leads to missed diagnosis and poor treatment,
which costs the NHS £30million a yearxiv.

It is important that people feel confident in managing their health

condition – from medication management to lifestyle and dietary
changes, they need to feel well informed and as in-control as possible.
According to the GP Patient survey, people who are deafblind report
much lower levels of confidence in managing their healthcare than
others.

A strong theme in our qualitative research was that many felt

inaccessible healthcare services led to a loss of control and
independence. They needed to rely on friends and family members to be
able to access services, resulting in a loss of privacy and dignity.

If services are accessible then people who are deafblind can confidently
access healthcare services and be active and involved participants in
their own health and care – and their healthcare needs can also be met
in a timely and appropriate way.

How confident do people who are deafblind feel in managing own

health?*

 ‘Very confident’: 19%

 ‘Not very confident’: 20.7%
 ‘Not at all confident’: 14.1%

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*Source: analysis of GP Patient Survey

It is important that accessibility is considered in all areas of healthcare.

Often, the solutions are simple and easy to implement with low or no
cost, but significant gain for those using the services.

When talking to deafblind people about their experiences, it is apparent

that small adjustments to practice or a wider understanding of their
needs would make all the difference. Most of the challenges that
deafblind people face are about a lack of awareness of their needs and
how best to meet them. Most staff want to support those who use their
services - they just don’t know how to go about it.

There are, however, some more significant changes and improvements

that required for healthcare services to be accessible.

The three biggest challenges deafblind people face are in accessing

information, communication and mobility. This report highlights how
these can impact on access to healthcare. It also highlights examples of
best practice and outlines how significant policy changes, such as The
Accessible Information Standard, have the potential to lead to a more
accessible health and care system.

“If healthcare was accessible…I would feel more in control”

“If healthcare was accessible…I would be able to access health care on

my own terms and without help”

“If healthcare was accessible…I would be able to explore options there

and then in that one appointment rather than having to go back to ask
further questions taking up health care providers time and facilities in
further ongoing appointments”

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Challenges to accessing information

Accessing information is a key part of how we interact with healthcare

services – for example, information on which services are available,
public health awareness campaigns, information on screening,
appointment letters and information on how to manage healthcare
conditions.

Not being able to get this information can create barriers at all stages of
the healthcare journey; from accessing a service in the first place, to
being able to make an informed choice about treatment options following
a diagnosis.

There are a wide range of causes, types and severity of hearing and
sight impairment and people may need information in a format other than
standard print – such as Braille, audio or large print.

Appointment information

Of the deafblind people we asked, 85% reported that they don’t get
information about their healthcare appointments or other information in a
format that they could access. Most reported that they needed to rely on
someone else to read their letters for them to find out what was in them.

Family members and carers also reported that they often have to access
the information on behalf of the deafblind person, as this mother
explains:

“I can access [the information] but she can’t. For her to access
appointment letters or letters from the consultants - the size would need
to be 36 point font. She is completely reliant on me to access this
information. This is becoming an issue now that she is in transition to
adult services. She would not be able to do it herself.”

Whilst some people do get information in the correct format, this is not
always in a timely way:

“Once I received information I had requested in Braille so late that I had

to rearrange my appointment.”

“It’s my body and I want to know exactly what’s going on with it.”

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Many people access multiple services or see many different doctors.
One person reported that she often gets ‘stuck in the middle’ between
professionals who don’t involve her in discussions about her care or
communicate effectively with her. She shared this example:

“I didn’t understand what they were saying or what was going on. I was
given two different diagnoses. Apparently they were arguing about it.
They had discussed it with me as an inpatient. Then I left and was an
outpatient – they discussed it without me and decided something else
which I then received in a letter. Letters are very daunting. It’s when you
get told what’s actually happening. I read the letter and thought, ‘I wasn’t
told that’.”

Additional healthcare information

People also need accessible information about conditions, treatments

and other services. A study by Sense and The Ear Foundation into the
experiences of deafblind people in audiology services xv found that most
information was delivered verbally in audiology appointments. One
person commented:

“[Information was provided] verbally, but struggled to hear as now unable

to lipread as well now”

Where people reported having information provided in print, it was rarely

in a format that they could access. A number of people also reported
having difficulties in understanding and identifying their medication:

“I was given a prescription. I was told how to take the tablets but I only
received this information verbally. It is hard to remember all of the detail.
All of the written information about medicines is in very small print. I try
to talk to the pharmacist but sometimes I cannot remember all of the
questions I want to ask. This is a concern – for example I worry about
different medications interacting with each other, or with other things I
might eat or drink.”

Some also reported that it can be hard for them to administer their own
medication:

“I would like to take my own medicines. They used to be in a container

that was not easy to use and I used to drop my medication. But it can be
changed to an easier sealed container.”

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There are many ways that healthcare information can be made more
accessible for deafblind people.

For many deafblind people, making standard print documents more

readable in terms of their formatting would be enough to enable them to
read them, without the need for additional formats to be created.

“If healthcare was accessible…It would improve my quality of life”

Technology

Many deafblind people now use a variety of assistive technologies to

access information.

For example, screen reader software on a computer, or devices such as

mobile phones can convert written text into audio output or refreshable
Braille. Alternatives include electronic magnification and scanners which
can convert printed information into different outputs. There is no
guarantee, however, that the scanner will be able to read the
information:

“I almost always get information in print so I cannot read it. This is

manageable if it is in a suitable format for scanning, but often it is not.
One hospital sends appointment letters out with the date and time
highlighted, but this is blanked out when scanned in.”

The healthcare sector is increasingly embracing technology to interact

with their patients and the public and many deafblind people are
benefitting from this. For example, sending appointment information via
text message instead of a letter in standard print may mean that a
deafblind person doesn’t need an appointment letter in standard print
because they can access the information from their mobile phone
adapted to their needs:

“They send letters and text reminders. This makes it easier, especially
as they send the text reminders twice (one closer to the appointment).”

There are other initiatives such as Patient Online – the NHS England
programme designed to ensure that patients are able to access online
services relating to their GP. This includes accessing notes, booking
appointments and ordering repeat prescriptions. However, as one
deafblind person, pointed out:

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“It might not be suitable for everyone so there need to be other options
still available.”

In fact, whilst many deafblind people we spoke to said that technological

advances are increasing their access to information, others highlighted it
as a further barrier – because there is a growing assumption that
everybody is online and able to access online information.

Making printed information more accessible for people with some

sight

 Use a minimum font size of 12 point, or preferably 14 point (which

is readable by a significantly greater number of people).
 Use a clear, uncluttered and sans serif typeface such as Arial.
 Align text to the left margin and avoid ‘justifying’ text which creates
gaps
 Ensure plenty of ‘white space’ on documents, especially between
sections. Avoid squashing text onto a page and, if possible,
include a double-space between paragraphs
 Print on matt and not glossy paper.
 Use page numbers.
 If printing double-sided, ensure that the paper is sufficiently thick to
avoid text showing through from the other side.
 Correctly format Word documents and PDFs using styles and
accessibility functions / checks. Ensure a correct and consistent
heading structure, and that the cursor can move throughout all the
text.
 Use descriptions (‘alt. text’) to explain diagrams or photographs.
 Consider making all ‘standard’ printed letters / documents ‘easier
to read’ – using plain English, highlighting important information,
and supporting text with diagrams, images or photographs.
 Keep track of the electronic originals of documents you print out so
you can reprint in larger font or convert to an alternative format
when required.

These guidelines are an excerpt from the Implementation Guidance for

The Accessible Information Standard (see page 23). For more
information on The Standard; your rights and your duties, visit
www.england.nhs.uk/accessibleinfo

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“Small changes make a big difference – my doctor is brilliant”

There are many simple steps that health care practitioners and services
can make which make a big difference to those who use them, as one
person explained:

“One doctor in particular, when I am there, he will record on a

Dictaphone what he is going to write on the letter. He will say to me, ‘just
ask me to stop if you don’t understand and I will say it in a different way’.
Then he sends me the letter and it is what we have agreed. He is the
only one I know who does this.”

“If healthcare was accessible…I would understand my health condition

more”

A challenge to privacy

Relying on somebody else to read your letters was identified as leading

to a loss of independence and control over healthcare as well as
encroaching on people’s privacy:

“At the moment someone has to read letters out to me. This is not ok as
it should be private and confidential.”

This issue was also raised in relation to public information campaigns.

One deafblind man explained:

“Leaflets come through my door, for example with health advice. I would
be interested in this, but I live with my [sighted] sister and she throws
them away. Sometimes my neighbours talk to me about things they have
read.”

Many public health and awareness raising campaigns rely on visual

advertising such as posters which means that many deafblind people
miss out. As one person put it:

“Hearing and sighted people are passive recipients of information all the
time, but deafblind people are not and we have to rely on others to
decide if information is important or not… The key thing is that I do not
know what information is out there… I do not know what I have missed
out on.”

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Highlighting good practice: Be Clear on Cancer Accessible
Campaigns

When it comes to public awareness campaigns, many focus on visual

and auditory based media such as posters, television and radio to get
their message across. For those with hearing and sight impairment, this
can mean that they can miss opportunities to access important
healthcare information.

“Sometimes I have been told by other patients in the GP surgery about

posters in the waiting area, for example about a flu jab clinic.”

The Be Clear on Cancer campaigns have addressed this by providing

their awareness raising materials in additional formats, including Easy
Read, large print, audio and BSL. For more information visit:
www.nhs.uk/be-clear-on-cancer/symptoms/blood-in-pee#resources

Barriers to effective communication

Communication is an essential part of day-to-day life. How would you

explain your symptoms or understand your diagnosis if you couldn’t
communicate with your healthcare professional? And how would you
book an appointment or arrange an appointment if the way to contact
your healthcare provider isn’t accessible to you?

There are many different types of communication that someone who is

deafblind might use. These may include clear speech, British Sign
Language (BSL), deafblind manual or blockxvi or adapted forms of signed
communication, such as hands on or visual framexvii. Some deafblind
people may also use assistive devices for communication, such as
hearing aids or objects of referencexviii.

When interacting with healthcare services, people who are deafblind

may need to use different forms of communication as, for example, using
the phone may not be accessible.

Access to interpreters

Many people who are deafblind use forms of communication where

interpretation is required to enable them to converse with their

15
healthcare professional. In these scenarios, very few people reported
that professionals arranged this for them - with many having to arrange
themselves or use family members as interpreters.

“Most of the time the hospital does not book interpreters, which means I
have to arrange and pay for my own interpreters. This is bad enough
when I am seen as an outpatient but it is ridiculously expensive if I need
an inpatient stay. The hospital booked an interpreter for two hours when
I had a week-long stay on the ward. I was only told this two days before I
was due to be admitted. I had to rely on colleagues to interpret for me in
hospital. This is completely unacceptable.”

“The interpreter arrived late for an appointment with my daughter, who is

five years’ old, and who was going to have an operation. The nurse
asked my daughter to interpret for me as the interpreter was late.”

Some people reported that interpreters were booked but that the
healthcare provider had not understood which type of interpreter was
required – so that the interpreter could not meet the individual’s
communication needs.

“I had an occasion where I know I asked specifically for a [hands on]

BSL interpreter and a BSL only interpreter turned up. She was quite
shocked as it was not what she was expecting, it was out of her comfort
zone so I had to take over.”

Language and context

For some individuals, communication is about more than providing the

correct type of interpreter or communication support - it’s about the
language used and how information is communicated:

“If it’s a complex issue it needs to be explained to him at the level he

would understand…It needs to be explained fully to him but on a level he
would understand. He should get the same information and support as
everyone else. He should get all the explanation that I would get – just
because it’s explained on a different level, shouldn’t mean it’s anything
less.”

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Good communication tactics

While some deafblind people need an interpreter, other people – who

may lipread or use hearing aids – can be greatly helped by using good
communication tactics.

“Understanding also depends on clear speech of the GP which is an

issue at my surgery. I will usually prefer to speak to the practice nurse
because of this.”

“It can also be difficult if they’re quick speakers.”

On the whole, people felt confident to challenge poor communication

and some described healthcare professionals who checked they were
communicating effectively:

“I ask them to face me directly (yes I get a good response)”

“At the Pain Clinic the doctor will check by asking ‘am I speaking clearly
enough?’ which shows they have a better understanding.”

“It’s what they say and how they say it”

The use of good communication in appointments is essential. There are

often many practical, simple steps that can be taken such as asking the
person to speak facing the person directly and at a slower pace. Often
though, it’s more about the language they are using.

“I always take my mum or partner with me to my appointments. Often the

doctors explain things in ways that I don’t understand so I think it must
be because I didn’t hear it properly. But when they say it again I still
don’t understand it and neither does my mum! The language they use is
so complicated. Now I often just say ‘I don’t know what you’re talking
about’”.

Our health in your hands: a survey of people with BSL as their first
or preferred language

 57% of respondents had been confused about how to take their

medication because no sign language interpreter was provided.
 10% of respondents said they had definitely taken medication
incorrectly, because no sign language interpreter was provided.

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  61% of respondents had put off going to a health appointment
because they were worried about communication problems.

For more information on this study, including additional findings, visit

www.actiononhearingloss.org.uk/get-involved/campaign/equal-
treatment/theproblem/survey-of-bsl-users.aspx

Contacting a healthcare provider

For many people, communicating with their healthcare provider – for

example to book an appointment – is a challenging and inaccessible
process.

“I had an appointment with the nurse at my GP surgery. Afterwards I

received an automated telephone call; it was very difficult to understand
the voice. I still do not know what the message was. There was no
information given to me about the organisation or the appointment. I am
likely to miss out on any information from a service which tries to contact
me by telephone.”

“Making appointments should be easier. Although I am now more

confident using the phone, they still have this as the primary way of
making an appointment. I understand that some GP surgeries now have
an online booking method but my GP does not have this yet. You have
to call at eight in the morning to get an appointment.”

“There needs to be a more appropriate way rather than just phone. At

my GP you can only book three weeks in advance so if your doctor says
see me in a month, you have to remember to call at the right time to get
an appointment. This is frustrating, they have the technology to send you
text reminders so why is it so difficult to let people book in advance? For
me (not for all people) yes the solution would be online booking”

It was also reported that some services deemed accessible alternatives

for communication are not usable due to security concerns:

“I cannot reach them by phone to change or cancel appointments or to

give information. I am not allowed a changeable normal life because
health people, especially mental health, will not use any communication
method which involves a third party i.e. text relay, nor email which is
refused absolutely as they say it is not secure xix.”

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Tips for good face-to-face communication

 Make sure you have the person’s attention before you start.
 Good lighting is important. Don’t have the light behind you – for
example, don’t sit with the window behind you.
 Speak clearly.
 Speak a little more slowly than usual but keep the natural rhythm.
 Speak a little louder, but don’t shout as this will distort your voice
and lip patterns.
 Keep your face visible. Don’t cover your mouth with your hand, or
speak while looking down.
 Take your time. Pauses will allow the person to work out what you
said before you start the next sentence.
 Repeat phrases if needed. If this doesn’t work, try re-phrasing the
whole sentence – some words are easier to lip read than others.
 Make the subject clear from the start.
 Use short sentences.
 Be aware that if the person is smiling and nodding it doesn’t
necessarily mean they have understood.

These tips are taken from It All Adds Up: a guide for healthcare staff on
supporting patients with sensory loss. For more information and to
download a copy, visit www.sense.org.uk/italladdsup

“If healthcare was accessible…I would regain a lot of self-respect as well

as better health”

A parent’s experience of accessible healthcare

“I am the mother of an eleven year old boy who has a condition called
CHARGE syndrome. One aspect of this is that he is classed as deafblind
(90% vision in one eye, a false eye and 100% deaf).

I am a mother with a desire to be able to communicate with my son. I

take BSL classes and so far have achieved Level 1 in BSL but I do have
a wider knowledge of sign as we as a family use it day to day.

My son is bright with a thirst for knowledge and like anyone, likes to
know what is happening to him/about him and has his own questions to
ask doctors or professionals.

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A while ago I did try to make people (especially hospitals) understand
that a BSL interpreter would be needed for my son at appointments. On
my first attempt (via the phone) I kept getting passed from person to
person, till one lady, who only identified herself as head receptionist,
asked me: “Where do we get the funding from?
Can’t you or a friend do it? Or why not bring someone from an
interpreting agency and maybe someone on the day will sign the
paperwork.”

After more explaining, and quoting the Disability Discrimination Act (just
the title of the Act, no more) an interpreter was provided.

But on other occasions I’ve asked for an interpreter to be provided,

turned up and asked about the interpreter and been told “sorry one’s not
been booked.”

As I said before, I do have a fair knowledge of BSL, but at some

appointments, I do find myself struggling to translate some of the
information to my son. I find that, despite the fact that I’ve made the
professional aware that my son is deaf and I’ll be interpreting so they
should take things slowly, the still have their eye on the time and tend to
talk quickly, and/or stand between us without any warning (or thought).”

Inpatient stays

Spending the night in hospital is not something any of us would look

forward to. But for those who have information and/or communication
needs this can be particularly daunting, as they may have concerns
about whether they will be able to communicate or be communicated
with.

“When you are in hospital you do not know that there is a drink or food
on your table – they just put it down. This can mean that I do not eat
during my stay”

Reduced appointment options

For some, the need to have communication support acts a limitation to

when appointments can be scheduled:

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“To get an appointment at the GP you have to book on the day - but I
can only go at certain times of the day when support is available. There
is a lack of awareness/understanding when you call up and explain.”

Highlighting good practice: supporting multi-sensory impaired

children in hospital

Coming into hospital can be a daunting experience for any child. For
children who have multi-sensory impairments, the challenges are even
greater. They can easily become frightened and disorientated in
unfamiliar surroundings because they have little or no sight and hearing,
often combined with other disabilities.

However, there is a lot that can be done to make the child’s stay much
more pleasant and comfortable. Sense’s Children’s Specialist Services
have developed a guide for hospital staff and resources for parents
including:

 Personal Passport – passports are a good way of bringing together

the most useful information about a child, the people in their life
and their likes and dislikes. Passports can be left by the child’s
bed, so that anyone visiting them can look through and find out
more about them.
 My Visitors – children in hospital are often visited by a wide range
of staff. ‘My Visitors’ is a way of encouraging staff to let parents
know they have visited their child and gives them chance to leave
them a message.
 Come and Say Hello - a bright sheet for parents to complete and
put up above a child’s bed. There’s space for a child’s name and
photo and a message to encourage staff to communicate with the
child.
 My Place Mat – every child has their likes and dislikes around
food. This is an eye catching and simple way of getting that
message across. There are spaces to add information on what the
child does like to eat, what they don’t like and the texture of food
that might work best for them.

To download the resources and find out more information visit:

www.sense.org.uk/content/multi-sensory-impaired-children-hospital

“If healthcare was accessible…It would make a big difference in

reducing stress and for my peace of mind and general wellbeing”

21
“If healthcare was accessible…It would improve the quality of care I
receive”

Misunderstanding of needs

Of those we asked, 56% of deafblind people reported that they had left
an appointment without understanding what had been discussed. Many
described needing to rely on a friend or family member to answer their
questions or provide support and the lack of independence that this
brought:

“Not always understanding what was discussed was an issue because I

then could not ask questions there and then. I would have to go over
what was discussed later with whoever came with me. Then I would
have questions and have to make another appointment. Waste of time
for me and NHS.”

“When I had poorer hearing, I would ask [my wife] to come with me. She
then had to explain things to me again after the appointment.”

Family members

Many also described how they had to allow family members to take the
lead in their appointments because of communication difficulties.

“I had to take a back seat in appointments as it seemed it made it easier

for everyone. I had to let [my wife] get on with it or we would have sat
there for hours. Sometimes I did find that they would address [my wife]
instead of me which isn’t right.”

Family members also reported the pressure that needing to interpret

brought, and the lack of control they felt. Some reported examples where
they felt the needs of their family members had been overridden due to
difficulties with communication:

“The consultant paid no heed to her other sensory loss, made no

allowances and overrode her wishes because he was pushed for time
and thought he knew best. Most of his nursing staff were of the same
mind.”

22
Highlighting good practice: partnering with providers

Deb Day is the Head of Operations for Sense in the Midlands. She has
recently been working in partnership with a local hospital to develop their
awareness and understanding of the needs of deafblind people in
healthcare:

“Over the years, I’ve known deafblind people who have had terrible
experiences in hospital, usually because their needs haven’t been
understood or met. Sometimes it’s hard for us to arrange support,
particularly in emergencies; we just have to go down there but when we
arrive, reception staff do not always listen to us. Sometimes people have
been left waiting for so long they have become upset and very
frustrated.”

Staff training

“Because we identified that A&E was a challenging environment for

deafblind people, a colleague and I decided to work with the local A&E
department and offered deafblind awareness training to their staff. The
training went well and they were very interested. We kept it very
practical, informal and focused on exercises which was a good
approach. We are now looking at how we can roll out training to the
Outpatient Department and wards. With the wards, we are looking at
what should be expected from their staff and our staff to ensure the
person receives the right care and treatment.”

Desensitisation work

“We support people who lack capacity to make decisions or have partial
capacity. Some people can get distressed if they had to have blood
taken or blood pressure checked etc. So we are working with a local
hospital to plan some visits, people will be able to go to the hospital just
to have a cup of tea with the staff, look at and touch some of the
equipment that would commonly be used. This makes it familiar to them:
the staff, the equipment, the hospital itself – so when they have an
appointment they are more familiar with the environment and not so
frightened. The hospital has a sensory room in their Outpatients
department which is available for people to use if they need a more
relaxing, quiet space to wait. Some consultants will also carry out their
appointments in the sensory room if it helps people to accept treatment.
We are looking into how we can roll this out to other hospitals.”

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Patient Passports

“We’ve also introduced ‘Patient Passports’ for use in the A&E

department: just a laminated card with a person’s details on like name,
NHS number, their needs, and connection to Sense or support
worker/carer. This will flag up that they are in need of extra support.
They are now offered the opportunity to wait in a quiet area and if
possible fast tracked so they are seen quicker. These are particularly
useful as they also give permission for the reception staff to speak with
the carer/support worker, who knows them very well, if required. In the
A&E department at our local hospital there is a box with objects of
reference which can be used to aid communication with the person
whilst they are waiting to be seen.”

“If healthcare was accessible…My health would improve”

Explanation of procedures

An important part of obtaining consent for treatment is ensuring that the

individual understands the procedure they are about to undergo. One
mother outlined the contrasting experiences her daughter has had when
receiving treatment:

“Time can be limited and doctors use complicated language, but they
need to explain to her. They also need to explain what they are going to
do; she needs to be prepared. We had this issue when she had tumours
in her ears. After the operation, they were going wash her ears out to
remove the gunk. However, they were just going to do it, without
explaining and asking. In contrast, her audiologist is patient and is
respectful. They will ask her permission: ‘would you mind if I examined
you?’. The audiologist will talk her through the stages of what they are
doing. If they didn’t do this, she would not let it happen.”

“If an interpreter is not arranged I can miss out on very fundamental

things. For example, on one occasion I was in hospital overnight with no
communication support and the hospital performed an invasive test on
me without me understanding what they were doing.”

Missed opportunities for care

Difficulties in communicating with healthcare professionals and services

can create a barrier to seeking and receiving treatment. Many of the

24
people we spoke to said that they avoided accessing healthcare services
unless it was urgent, or they just felt that they couldn’t access care at all.

“We cannot use out of hours services – no interpreters available.”

“I have been regularly denied access to treatment due to refusal to

communicate in a mutually useful and respectful manner.”

Others reported that because services couldn’t communicate with them

in an accessible way they had missed appointments:

“When I was waiting for my appointment to have cochlear implants, the

hospital contacted [my wife] to say there had been a cancellation. If I
had been able to take that appointment, I would have got the implants
three months earlier, and we were desperate for it so would have made
sure we got there. Unfortunately, as they left a message on [my wife]’s
phone, she was at work and was not able to check messages until after
school (end of working day). By that time the appointment had gone. If
they had contacted me, I would have been able to say yes or no. It
would have enabled me to make my own arrangements and to respond
quickly.”

Sally, the daughter of a woman who is deafblind explores the

challenges her mother faces when accessing healthcare

Sally’s mother Barbara has been deaf since birth and has a progressive
sight condition. Her first language is British Sign Language (BSL) which
she uses in an adapted way called ‘hands on’ (also known as ‘tactile’) so
that she can feel the signs people are making rather than using her
sight. After living independently for many years, Barbara now lives with
Sally who has also taken on the role of her carer.

“It’s not just getting communication support; it’s getting the right
communication support.”

For short notice or routine appointments, Sally often interprets for

Barbara, but for more complex appointments will request an interpreter
to be arranged in advance. Unfortunately this isn’t always successful.
Despite Sally being clear about what is required, people still often don’t
understand Barbara‘s communication needs.

“I need to be able to be a daughter and carer, not an interpreter.”

25
“To get the correct type of interpreter when one is asked for would make
a big difference to both of us. I would definitely feel more in control.
Trying to translate in a new environment, absorb important information,
ask the right questions and feel as though I have successfully
discharged my duty all at once is very stressful. I am sure that Mum
senses this and feels as much responsible for me as I do for her.”

Mobility

For people who are deafblind, mobility and navigation can be a

challenge – both in terms of getting to a healthcare provider but also
once they are there.

Waiting for appointments

Many GP practices and hospital departments now use different ways to

alert someone that their clinician is ready for their appointment. For
some this is a verbal alert, for others it’s a display screen or an audio
announcement. Waiting is often a stressful time, and many people have
missed appointments due to not hearing their name being called xx.

“They just put me into the clinic and leave you there. And when your
name’s called you can’t hear it. And you sit there and you sit there and
the clinic’s nearly finished. And someone comes up to you and says
“What’s your name? Oh you should have been seen a long time again,
now you’ll have to wait until the end of the clinic”” xxi

“In A&E – you’re left waiting and you think people have forgotten about
you. I’ll tap my stick to get someone’s attention and ask what’s
happening. I will hear people tutting at this. It’s very difficult to do but you
have to. It makes me embarrassed which makes everything worse.”

Some people who visited health services regularly, and got to know the
staff had developed ways to be alerted about their appointment:

“If they know me like at the hearing aid centre, or at my GP then it’s ok.
At the GP, when I wait in the waiting room, I will hear a buzzer when it’s
my turn. The GP will come out to get me and I will take his arm.”

26
Navigation

Hospitals and new environments can be very challenging to navigate for

people who are deafblind. Many deafblind people will memorise key
routes and landmarks (such as steps or doorways) to help navigate. If
visiting a new location, they will need to establish these routes but this
can be difficult when you have a sight impairment as clues such as signs
and maps may not be accessible:

“New buildings are a challenge: I used to be able to get around at my

GP but now they have changed the building and it’s too big.”

Getting to the clinic

For many people who are deafblind, getting to the clinic or hospital
where they have an appointment is the first challenge:

“I am currently attending a lot of appointments in central London. It’s not

the easiest to get to from my home. I manage to always arrange
someone to come with me (its whoever is available really)”

Whilst many hospitals offer services or support with getting to

appointments they aren’t always particularly practical or usable:

“They do have a service to bus people in, but the problem is it picks you
up at 9am. If your appointment is in the morning the bus doesn’t leave
until the end of the day to take people home. So you will have to wait
and spend the day there. It also drops you at the clinic you’re supposed
to be in and then you’re on your own. What if I need the loo?
Fortunately, I’ve never had to use the bus service.”

“If healthcare was accessible…It would give me independence over my

own health”

The hospital environment

A recent review of the experiences of people with rare syndromes and

sensory impairments in hospitals and clinics identified a number of
challenges for deafblind people relating to the hospital environment:

 Lighting: depending on the cause of someone’s sight impairment,

some people may find glare from bright lights overwhelming, whilst

27
 others will need bright lighting in order to navigate and avoid any
obstacles.
 Signage: relying on signs to find wards and departments can be a
challenge when you have a visual impairment, especially if the
signs are of poor quality, small or in poorly contrasting colours.
 Background noise: for someone with a hearing loss, background
noise can make it difficult to hold a conversation, even if they use
hearing aids. This can be even more challenging for deafblind
people who can’t use lip reading to supplement their hearing.
 Obstacles: navigating a route to a clinic can be more challenging if
the main hallways and paths are not clear. For example, the
storage of spare patient beds or laundry bins in hospital corridors
can provide an additional challenge.

The full report, including results from audits of clinics, is available online
at: www.sense.org.uk

Checklist: making services more accessible (the environment)

 Are all areas well lit? Are there any dark corners or big changes in
light level between corridors and rooms?
 How easy would it be for someone with limited vision to move
around; could they find doorways, bannister rails, etc? Look for:
o Colour contrast between bannister rails, door frames and
walls
o Are the labels on doors in large lettering with colour
contrasted backgrounds?
 Are floors and walkways kept clear of obstructions?
 Does background music or radio make it difficult for hard of
hearing patients to hear their name called?

For further information on making healthcare services accessible visit

www.sense.org.uk/italladdsup

Staff awareness and understanding

For many people who are deafblind, their sensory impairments may not
be immediately apparent which can lead to staff not understanding that
they need support:

28
“My condition means that my eyes look fine – so people think I haven’t
got an impairment.”

When support is provided this is not always the type of support that is
needed:

“I did have an issue where I asked someone to help me to the exit and
he brought out a wheelchair. I don’t need a wheelchair, my legs are fine.”

Even in specialist services, people reported that staff didn’t adapt their
practice to meet their needs:

“I was called into an appointment, and they said ‘follow me’ – but I need
their arm. They didn’t recognise my stick – and this is an eye hospital!”

“Having a healthy lifestyle isn’t as straightforward as you might

think”

“Every doctor focuses on one thing (their specialist area) but they do not
look at how each area links together and overlaps. For example, at the
orthopaedic department, the registrar said ‘why do you not exercise
more?’. They don’t understand that I cannot do this on my own and at
my own will because I am deafblind. I would like to. They see it as ‘you
need to get up and help yourself’. They don’t get how it all connects. If
there were opportunities and the appropriate support in place then I
could. For example, I am part of a health club but I need support to
access this facility so cannot go at will.”

Many deafblind people report challenges in accessing sport; from

difficulties getting to the venue to lack of accessible equipment and staff
attitudes. Sense have a dedicated sports team who offer training and
workshops for sports coaches, encourage deafblind people to take part
in sport and physical activity and deliver a wide range of activities
including yoga, karate, cycling, swimming and rock climbing.

In Sense’s recent Deafblind Active project the team supported 409

people to take part in an activity, trained 59 Sense support workers, 41
sports coaches and created an instructional video resources to help
people adapt their sessions making them inclusive for deafblind people.
A new project has recently begun called Sporting Sense which aims to
strategically grow participation in sport by upskilling the both the health
and social care and sport sectors.

29
For more information visit: www.sense.org.uk/active

Highlighting good practice: Audiology e-learning

Following an increased number of enquiries to their Information and

Advice service, Sense commissioned a research project to identify the
experiences of deafblind people when accessing audiology services.
Carried out in partnership with The Ear Foundation, the study highlighted
that clinicians would benefit from some deafblind awareness training,
specifically regarding their audiology practice. As a result of the study,
and further discussions with audiologists, Sense developed and
launched an e-learning resource for audiology professionals focusing on
a number of areas including developing accessible practice,
considerations to make when fitting hearing aids and more.

For more information on the research report visit:

www.sense.org.uk/audiologyreport

For more information on the e-learning resource visit:

www.sense.org.uk/content/deafblind-awareness-audiology-professionals

Meeting needs: the Accessible Information Standard

It is clear that a lack of accessible information and communication

support are the key barriers for many deafblind people in accessing
healthcare. The Accessible Information Standard is therefore a welcome
step in tackling these barriers head on.

The Accessible Information Standardxxii sets out what health and social
care providers must do to meet the information and communication
needs of those who access their services. Issued under Section 250 of
The Health and Social Care Act 2012, full implementation of the
Standard is mandatory from 31st July 2016 onwards.
The Standard sets out five key steps that providers must take:

1. Identify the communication and information needs of those who

use their service
2. Record the communication and information needs they have
identified clearly and consistently on the individual’s record. They

30
 should record someone’s needs, not why they have those needs
i.e. “requires BSL interpreter” not “person is d/Deaf”.
3. Have a consistent flagging system so that if a member of staff
opens the individual’s record it is immediately brought to their
attention if the person has a communication or information need.
4. Share the identified information and communication needs of the
individual when appropriate. For example, a GP referring a patient
to the hospital should include the information that the person
needs a deafblind manual interpreter in the referral letter so that
the hospital can arrange it for the upcoming appointment.
5. Meet the communication and information needs identified. For
example, send an appointment letter in Braille or book an
interpreter for an appointment.

Under the Standard, providers must carry out the five steps in relation to
four areas of accessibility:

 Communication support – does the individual use or need

additional equipment or methods of communication to help them
communicate? This could include the use of hearing aids, or the
need to be able to lipread the person who’s speaking to them.
 Communication professional – does the individual require a
communication professional to be arranged for their appointment –
for example, a deafblind manual interpreter, speech to text reporter
or communicator guide?
 Contact method – what is the best way to contact the individual? It
may be that they can’t use the phone for calls but can receive and
send texts or use email instead.
 Information format – does the individual need information in a
format other than standard print –for example, large print, Braille or
audio. This applies to ‘personal’ or ‘direct’ information such as
appointment letters or prescriptions, and ‘generic’ or ‘indirect’
information such as leaflets or manuals.

Who does the Standard apply to?

“The scope of the Standard extends to individuals (patients and service

users, and where appropriate the parents and carers of patients and
service users) who have information and / or communication support
needs which are related to or caused by a disability, impairment or
sensory loss.”

31
The Standard must be carried out by all providers of NHS and publicly
funded adult social care. This includes hospitals, GPs, social care
services, pharmacies and others.

The Standard does not apply to those who have information or

communication needs relating to not having English as a first language,
accessibility of websites, the information and communication needs of
staff or physical accessibility needs such as signage and building layout.

Points of note

 The use of registered interpreters – the Standard clearly sets out

that if an interpreter is required, a qualified and registered
interpreter must be provided. It also states that, as a rule, family
members should not be used as interpreters, although recognises
that in some scenarios it may be necessary for them to support the
individual/interpreter where someone has an individual or adapted
form of communication.
 Parent and carer needs – if a parent or carer has information and
communication needs, providers must meet these as necessary.
For example, if a parent of a child communicates using BSL and
their child has an appointment at the hospital, an interpreter must
be provided for the parent (even if the child does not have
information and communication needs themselves).
 The responsibility lies with the provider – once an individual has
shared their information and communication needs, the
responsibility for meeting these lies with the provider of their health
and social care.
 Timely and equitable access – the aim of the Standard is to ensure
that people with information and communication needs are able to
access health and social care in a fair and equitable way.
Individuals who need information and communication support
should not be disadvantaged by this. Whilst providers may not
necessarily hold all of their information in accessible formats, they
should know how to arrange this when requested – and be able to
provide it in a timely way that does not disadvantage the individual.

More information on the Standard can be found on the NHS England

websitexxiii.

32
Conclusion

Whilst there are legal duties and obligations to meet the needs of people
who access healthcare services, this doesn’t always happen. Meeting
access needs will have a significant and powerful impact on the lives of
people who are deafblind. In most cases, the steps that are needed are
small, low in cost and highly beneficialxxiv.

“The patient will be at the heart of everything the NHS does. It should
support individuals to promote and manage their own health. NHS
services must reflect, and should be coordinated around and tailored to,
the needs and preferences of patients, their families and their carers.”
Principle 4 of the NHS Constitutionxxv

Despite this being a key priority for the NHS, the findings of this report
show that many people who are deafblind are not able to have choice
and control over their healthcare. If services were accessible then
people who are deafblind and their families would be able to make
informed choices and take back control of their healthcare. They would
be empowered and active participants in their care.

For many, the need to rely on others is disempowering and limits

confidence and independence. Enabling people to access services
independently and to engage directly with staff and services will lead to
an increase in confidence and independence. If people who are
deafblind feel confident to access services and know that their needs
would be met, they are more likely to use these services. It will also
allow for friends, family members and spouses to be restored to the roles
they should have – rather than having to take on informal care or
interpretation roles.

If people are able to access information about their healthcare and

communicate effectively with health services they can make decisions
that are informed and right for them. This is an essential part of
healthcare for us all.

33
Healthcare services need to ensure that they are accessible for those
who are deafblind. From implementing the mandatory Accessible
Information Standard, to increasing staff awareness there are many
steps that services can take.

Healthcare providers must ensure they meet their duties with regards to
accessibility, thus removing the undue pressure on people who are
deafblind and their families, who have historically had to bear the
responsibility for communication support and accessible information.

A fully accessible healthcare system will benefit not only those who are
deafblind but also their family members and friends - effective
communication benefits us all. It will also benefit health providers as they
will be able to meet the needs of those who use their services and
ensure that they get the right treatment at the right time and in the right
way.

34
Endnotes

35
i
http://www.nhs.uk/NHSEngland/thenhs/about/Pages/overview.aspx
ii
https://www.gov.uk/government/publications/the-nhs-constitution-for-england
iii
Officially known as SCCI 1605 (Accessible Information)
iv
Think Dual Sensory, Department of Health, 1995
v
https://www.sense.org.uk/content/how-many-people-who-are-deafblind-are-
there
vi
A genetic condition which commonly affects someone’s ears, eyes, heart
and nose, amongst other things.
vii
A genetic condition which affects vision, hearing and, in some cases,
balance. https://www.sense.org.uk/content/usher-syndrome
viii
Annual Report of Chief Medical Officer, 2012, On the State of the Public’s
Health;
www.gov.uk/government/uploads/system/uploads/attachment_data/file/29829
7/cmo-report-2012.pdf
ix
A biannual survey sent to patients asking about their experiences of their
GP practice. Commissioned by NHS England. For more information visit:
https://gp-patient.co.uk/
x
When comparing data from those who reported sight and hearing
impairment with those who didn’t.
xi
Respondents who selected “ I am slightly anxious or depressed”, “I am
moderately anxious or depressed”, “I am severely anxious or depressed” or “I
am extremely anxious or depressed”
xii
www.improvinghealthandlives.org.uk/securefiles/160610_1455//People
%20with%20learning%20disabilities%20in%20England%202013.pdf
xiii
www.seeability.org/
xiv
www.signhealth.org.uk/health-information/sick-of-it-report/sick-of-it-in-
english/
xv
https://sense.org.uk/content/audiology-services-and-hearing-technologies-
experiences-deafblind-individuals-0
xvi
Deafblind manual and block are both forms of communication where words
are spelt out onto the hand of the deafblind person:
www.sense.org.uk/content/alphabet-based-communication
xvii
www.sense.org.uk/content/sign-systems-and-languages
xviii
www.sense.org.uk/content/symbol-systems
xix
Guidelines for healthcare providers on how to securely email and text their
patients are available online:
www.england.nhs.uk/wp-content/uploads/2016/04/Using-email-and-text-
messages-for-communicating-with-patients.pdf
xx
Research by Action on Hearing Loss showed that 14% of people had
missed their name being called in the waiting room:
www.actiononhearingloss.org.uk/supporting-you/policy-research-and-
influencing/research/access-all-areas.aspx
xxi
Quote from participant in Audiology Services and Hearing Technologies:
The Experiences of Deafblind Individuals www.sense.org.uk/audiologyreport
xxii
Please note, the Accessible Information Standard (also known as
SCCI1605 (Accessible Information)) is an England only policy. For more
information on duties that health and social care services in Wales have
please visit: www.sense.org.uk/content/accessible-healthcare-standards-
wales
xxiii
https://www.england.nhs.uk/ourwork/patients/accessibleinfo/
xxiv
For more information on how to make services accessible visit
www.sense.org.uk/italladdsup
xxv
https://www.gov.uk/government/publications/the-nhs-constitution-for-
england

About Sense
Sense is a national charity that supports and campaigns for children and
adults who are deafblind, those with sensory impairments, and those with
complex needs. We provide tailored support, advice and information to
individuals, their families, carers and the professionals who work with them.

We believe that each person has the right to choose the support and lifestyle
that is right for them; one that takes into account their long-term hopes and
aspirations. Our specialist services enable each individual to live as
independently as possible, offering a range of housing, educational and
leisure opportunities.

Sense
101 Pentonville Road
London
N1 9LG

Tel: 0300 330 9256 (voice)

Text: 0300 330 9256
Fax: 0300 330 9251
Email: [email protected]
Website: www.sense.org.uk

Registered charity number 289868

Patron: HRH The Princess Royal

Produced with funding support from the Department of Health