Equal access to healthcare

Equal access to healthcareThe importance of accessible healthcare services for people who are deafblind

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INTRODUCTION

Contents

Executive Summary 4

Deafblindness in the healthcare context 6

Why does accessibility matter? 8

Challenges to accessing information 10

Barriers to effective communication 15

Mobility 24

The Accessible Information Standard 28

Conclusion 30

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 hours1.

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.2

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.

MethodologyThis 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.

Introduction

1 http://www.nhs.uk/NHSEngland/thenhs/about/Pages/overview.aspx2 https://www.gov.uk/government/publications/the-nhs-constitution-for-england

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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 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.

Executive summary

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EXECUTIVE SUMMARY

The Accessible Information Standard3 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

– 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.

3 Officially known as SCCI 1605 (Accessible Information)

Deafblindness is a “combined sight and hearing impairment [which] causes difficulties with communication, access to information and mobility”4. 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 195.

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 CHARGE6 or Usher syndrome7. 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 conditions8.

Sense’s analysis of the data from the GP Patient Survey9 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.10 This means that people who are deafblind will need to access a wide range of services not just those related to their sensory impairments.

Deafblindness in the healthcare context

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DEAFBLINDNESS IN THE HEALTHCARE CONTEXT

4 Think Dual Sensory, Department of Health, 19955 https://www.sense.org.uk/content/how-many-people-who-are-deafblind-are-there6 A genetic condition which commonly affects someone’s ears, eyes, heart and nose, amongst other things. 7 A genetic condition which affects vision, hearing and, in some cases, balance. https://www.sense.org.uk/content/

usher-syndrome 8 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/298297/cmo-report-2012.pdf9 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/10 When comparing data from those who reported sight and hearing impairment with those who didn’t.

If healthcare was accessible…“My confidence would grow”

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DEAFBLINDNESS IN THE HEALTHCARE CONTEXT

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 depression11, 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 England12. 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 glasses13. 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* 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

* selecting ‘blindness or severe visual impairment’

AND ‘deafness or severe hearing impairment’

11 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”

12 www.improvinghealthandlives.org.uk/securefiles/160610_1455//People%20with%20learning%20disabilities%20in%20England%202013.pdf

13 www.seeability.org/

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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 year14.

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.

Why does accessibility matter?

14 www.signhealth.org.uk/health-information/sick-of-it-report/sick-of-it-in-english/

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%

* Source: analysis of GP Patient Survey

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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WHY DOES ACCESSIBILITY MATTER?

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”

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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 informationOf 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.

Challenges to accessing information

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

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’.”

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

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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.”

Additional healthcare informationPeople 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 services15 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.”

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.

15 https://sense.org.uk/content/audiology-services-and-hearing-technologies-experiences-deafblind-individuals-0

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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:

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 28). For more information on The Standard; your rights and your duties, visit www.england.nhs.uk/accessibleinfo

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

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“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:

“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.

“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.”

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A challenge to privacyRelying 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.”

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

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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 block16 or adapted forms of signed communication, such as hands on or visual frame17. Some deafblind people may also use assistive devices for communication, such as hearing aids or objects of reference18.

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 interpretersMany people who are deafblind use forms of communication where interpretation is required to enable them to converse with their 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.”

Barriers to effective communication

16 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

17 www.sense.org.uk/content/sign-systems-and-languages18 www.sense.org.uk/content/symbol-systems

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Language and contextFor 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.”

Good communication tacticsWhile 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.

• 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/the-problem/survey-of-bsl-users.aspx

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

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Contacting a healthcare providerFor 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”

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

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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 secure19.”

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.

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).

19 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

If healthcare was accessible…“It would make a big difference in reducing stress and for my peace of mind and general wellbeing”

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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 donot eat during my stay”

Reduced appointment optionsFor some, the need to have communication support acts a limitation to when appointments can be scheduled:

“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 improve the quality of care I receive”

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Misunderstanding of needsOf 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 membersMany 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.”

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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.” 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.”

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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 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.”

If healthcare was accessible…“My health would improve”

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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.”

“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.”

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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 appointmentsMany 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 called20.

“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””21

“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 its my turn. The GP will come out to get me and I will take his arm.”

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.”

Mobility

20 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

21 Quote from participant in Audiology Services and Hearing Technologies: The Experiences of Deafblind Individuals www.sense.org.uk/audiologyreport

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MOBILITY

Getting to the clinicFor 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)”

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 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/rare syndromes

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:

– Colour contrast between bannister rails, door frames and walls

– 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

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MOBILITY

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.”

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

“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.

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

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MOBILITY

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

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

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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 Standard22 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 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.

Meeting needs: The Accessible Information Standard

22 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

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MEETING NEEDS: THE ACCESSIBLE INFORMATION STANDARD

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.”

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 noteThe 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 website24.

24 www.england.nhs.uk/accessibleinfo

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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 beneficial25.

“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 Constitution26

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.

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.

Conclusion

25 For more information on how to make services accessible visit www.sense.org.uk/italladdsup26 https://www.gov.uk/government/publications/the-nhs-constitution-for-england

CONCLUSION

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About SenseSense 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.

Sense101 Pentonville RoadLondon N1 9LG

Tel: 0300 330 9256 (voice)Text: 0300 330 9256Fax: 0300 330 9251Email: [email protected]: www.sense.org.uk

Registered charity number 289868Patron: HRH The Princess RoyalProduced with funding support from the Department of Health

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Equal access to healthcare