One year on: the All Wales Standards for communication and information for people with sensory loss

Report by Action on Hearing Loss Cymru, RNIB Cymru and Sense Cymru, December 2014

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Foreword

An historic day for Wales

In December 2013, the Health Minister, Mark Drakeford, launched the Accessible Healthcare Standards for People with Sensory Loss in Wales.

This was an historic day – the day when Wales became the first country in the UK to lay out clearly how NHS services would be delivered accessibly to people who are deaf, hard of hearing, blind, partially sighted or have dual sensory loss.

Professor Drakeford said, “The NHS must be accessible to all groups and these standards - once fully implemented - will help to address the barriers that people with sensory loss face in accessing health services, particularly in helping staff to identify patients with sensory loss and meeting their needs.

"The All Wales Standards have been shaped by people with sensory loss, working collaboratively with Welsh Government, the NHS Centre for Equality and Human Rights and other key stakeholders and the standards are the first of their type in the UK.”

The Standards set out how the Welsh NHS would deliver its requirements to meet the Equality Act for people with sensory loss.

So, one year on, the charities working with people with sensory loss thought it timely to review progress. We wanted to ask: what impact are the new Standards having on the life of people with sensory loss?

This report is the conclusion of that work, featuring the snapshot views of more than a 100 people in Wales who have a sensory loss. We are very grateful to every single person who gave their time to share their experience of using the NHS in Wales.

The picture painted is a grim one.

Dignity still not being respected

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People with sensory loss in Wales are still leaving hospital every day, unsure of how much medication they are meant to take, unsure of what advice they have been given.

In our hospitals, people are still facing needless barriers due to their hearing and sight loss. Every day, patients continue to feel their dignity is not being respected and their communication needs overlooked.

We are undoubtedly seeing some progress in that Health Boards are spending time looking at their services for people with sensory loss. We know that most health workers in Wales would be horrified at the thought that they provide an inferior service to a person with sensory loss. We know that they need and want to be given the tools to do their job in the safest and most appropriate way.

But the progress we’ve seen is plainly not enough.

Action needed

Put simply - patients are not seeing the increased accessibility they were promised.

This is a sobering report that needs to be addressed by Welsh Government, Health Boards and all stakeholders.

The commitment to increasing standards of care for people with sensory loss needs to be prioritised and implemented – and fast.

Richard Williams, Director, Action on Hearing Loss CymruCeri Jackson, Director, RNIB CymruWayne Lewis, Head of Services, Sense Cymru

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Key findings

91% of patients with sensory loss are not aware of any improvements in the way healthcare services communicate and share information with them

Only around 1 in 5 patients are asked about their communication and/or information needs by healthcare services across both primary and secondary care settings

58% of respondents said that they did not know how to report a concern or complaint

Introduction

In Wales an estimated 500,000 people are affected by hearing loss (1) and 100,000 people are living with sight loss that has a significant impact on their daily lives (2). Around 18,850 people in Wales are affected by a combination of sight and hearing loss, known as dual sensory loss or deafblindness (3), which causes difficulties with communication, accessing information and mobility. Sensory loss is particularly prevalent among older people: as many as 1 in 9 people over the age of 60 and 1 in 3 people over the age of 85 are living with sight loss (4); over 70% of older people will have hearing loss (5); 62% of the deafblind population are over 70 (6).

As many people with sensory loss are older, many will have other medical conditions which are not linked to their sensory loss. Likewise, children whose sensory loss is congenital are more likely to require specialist input from a variety of services, including medical care. This means that people with sensory loss are significant users of health services in Wales. It is therefore vital that health services across the spectrum are able to recognise and respond to the information and communication needs of people with sensory loss.

The Equality Act requires healthcare services to make reasonable adjustments to ensure equality of access to healthcare services for disabled people. As well as the legal requirement, there are practical reasons why health services should ensure they meet information and communication needs. Failing to communicate with people in a way that

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they can understand, or provide information in a format that a patient can read, wastes time and money and puts patients at risk. Thus we welcomed the All Wales Standards for Accessible Communication and Information for People with Sensory Loss in providing further specific guidance for health services on meeting the information and communication needs of people with sensory loss.

One year on from the publication of the Standards, Action on Hearing Loss Cymru, RNIB Cymru and Sense Cymru surveyed service users who had experience of using health services to see what impact the Standards have had on the experience of people with sensory loss when accessing these services. We will use this report to inform the work of the Accessible Healthcare Standards Steering Group, including the NHS Centre for Equality and Human Rights’ (NHS CEHR) annual report on the implementation of the standards.

Methodology120 people with sensory loss were surveyed, interviewed or took part in focus groups. Responses to the survey were obtained from each of the seven Health Boards (HB) areas in Wales. Interviews and focus groups were primarily held in South East Wales and the data obtained reflects this clustering.

Table 1: number of responses from each Health Board area

Health Board (HB) area Number of responsesAbertawe Bro Morgannwg University HB

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Aneurin Bevan University HB 10Betsi Cadwaladr University HB 15Cardiff and Vale University HB 27Cwm Taf Univeristy HB 8Hywel Dda University HB 5Powys Teaching HB 6Not specified 15

In line with the Standards, people questioned were asked about their experience of primary care, scheduled secondary care and emergency care over the previous 12 months. Questions covered whether patients noticed an overall improvement in the way health services communicate and share information with them and specifically addressed:

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whether patients were asked about their information and/or communication support needs and whether these needs were met;

whether staff were able to communicate well with them; the physical environment and how this impacted on them.

Responders were also asked about their awareness and experience of the complaints process. A copy of the survey questions is attached at Appendix 1.

The number of responses to each question varied, as not everyone had used health services in each area of care, and depending upon the type of sensory loss, some questions were not relevant.

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Results

Primary care

86% of patients with sensory loss reported no improvement in the way GP surgeries communicate and share information.

This feedback is very disappointing; it appears that implementation of the standards has resulted in little change. For many people their GP is the first port of call when they have a non-urgent health problem. Yet the feedback we received suggests that there remain significant barriers for people with sensory loss in accessing GP services.

Information and communication needs

Only 19% of people surveyed who needed information in an accessible format were asked about their information needs.

76% of people needing information in an accessible did not receive information in the correct format.

“My GP is aware I am deafblind, as are the practice staff. They have not offered any alternative formats and they send letters in font too small for me to read. They refuse to use email although I have asked for this a few times.” Deafblind person, Aneurin Bevan UHB.

Everyone has the right to access information in a format that is accessible to them. However, this survey found that more than three quarters – 76% – of respondents who need information in an accessible format were not provided with information about their conditions in the correct format. This particularly affects people with sight loss.

Not getting information in an accessible format compromises confidentiality, through needing a third party to relay information to the patient; it can also compromise wellbeing and independence, for example if the patient cannot read a dietary advice sheet or how to take medication correctly. At focus groups with blind and partially sighted people, this issue was highlighted. While it was recognised that current IT systems may not be designed to facilitate producing information in accessible formats, it was felt that GP surgeries could be more proactive in meeting the needs of individuals, such as emailing information or increasing font size on communications, and that this could be done at

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little extra cost. However longer term, more sustainable and systematic ways of making information accessible must also be sought.

64% did not receive the communication support they need when accessing primary care.

The Final Report of the Accessible Healthcare for People with Sensory Loss Steering Group (2011) stresses that ineffective communication with patients with sensory loss is a patient safety issue (7). Of those surveyed, we can conclude that almost two thirds were potentially put at risk by not receiving the appropriate communication support to enable them to engage in and fully understand their consultations with healthcare professionals.

Staff awareness“On a recent visit to the GP I needed to ask the Doctor to look at me and not at the computer screen when speaking. On asking if there was a 'Hearing Alert' on the front page of my notes the answer was No! He has now put a note on and I asked him to take care to do so with other patients who have a similar problem.” Person with hearing loss and lipreader, Powys Teaching HB.

“A lot of it is common courtesy, for example you see different GPs and other staff when you go to the GP but they don’t introduce themselves, they don’t tell you where the chair is when you go into the room, and so on. It’s just ‘yes, how can I help you?’” Blind or partially sighted person, Abertawe Bro Morgannwg University HB.

57% of respondents met at least one member of staff who wasn’t able to communicate well with them.

Too many people with sensory loss are still not being communicated with effectively by staff. Effective communication between staff and patients with sensory loss is reliant on staff awareness of the patient’s particular communication needs. Providing this basic information on patient files using a flagging system could help improve patient experience to the extent where patients feel that all staff are able to communicate well with them because they have the knowledge and tools to do so. However, in focus groups with blind and partially sighted people, some said that even though their sight loss was flagged on their medical record, the GP didn’t seem to look at this information until they were in the consulting room. By this point it was already too late to offer some of the assistance they needed, for example, with checking in for

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their appointment, finding their way to the consulting room, locating a chair within the room (and so on). In addition, feedback highlighted that systems need to be capable of flagging when a parent or carer has sensory loss and what adjustments they require.

“My father has been unconscious four times in the past year and has needed emergency treatment plus follow-up. Here I have needed to communicate with medical staff and gain information. This isn’t just about a deaf person’s appointments, it is also about next of kin issues too” – British Sign Language user, address not given.

Primary care environment

22% reported that their surgery is poorly designed to meet their needs.

“The surgery is very accessible for someone with physical disability, but because of the degree of my sight loss, it's irrelevant to me.” Blind or partially sighted person, Cardiff and Vale UHB.

The vast majority – 78% – of respondents said that their surgery environment is either acceptable or well-suited to their needs as a person with sensory loss and there were examples of good practice:

“As I approached the receptionist she asked me can I help. I told her that I had an appointment for a flu jab. She offered to take me to a seat. Then she got on to the phone to the nurse and told her that she must come and get me as I am blind. After I had the jab the nurse offered to take me to the main door.” Blind or partially sighted person, Betsi Cadwaladr UHB.

However, there is clearly a distance to be travelled in making GP surgery environments accessible to all and examples of good practice were not widespread. This was particularly true for respondents who were blind, partially sighted or deafblind, who noted that navigating around healthcare environments is a major worry, and can put them at risk.

“The GP pops out of her room like a cuckoo, then back in, and I don’t know where she’s gone or where I’m supposed to go.” Blind or partially sighted person, Cwm Taf UHB.

Concerns included the lack of audio alerts as well as little awareness from staff of the need for support and guiding.

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Secondary care

Only 9% of patients with sensory loss noticed an improvement in the way hospitals communicate and share information with them about routine or scheduled care.

Information and communication needs

“I had surgery. I asked for an interpreter, the staff did not know how to book one. I told them I could put them in touch with an interpreter. Eventually switchboard came back and said a CODA nurse would be present for my admission and surgery. The nurse is not a qualified interpreter (I have met them before). When I was admitted and had surgery, the CODA nurse wasn't there. I signed the consent forms for surgery not understanding the medical jargon on them. I could not understand the surgeons before and after surgery.” Deaf person (no address given).

Again, responses to our survey echoed the 2011 steering group report in highlighting that effective communication with patients with sensory loss is a patient safety issue as well as potentially traumatic for the patient. As the experiences of our respondents testify, ineffective communication can have serious implications, both for the patient and for the health organisation. For example, the fundamental issue of a patient’s ability to give informed consent:

“Even signing a consent form is never in the format needed. When you get staff to read it out, they don’t seem to like to read it out to you” Blind or partially sighted person, Abertawe Bro Morgannwg UHB.

Almost 4 out of 5 of respondents requiring communication support were not asked about this.

The offer, or arrangement, of communication support for Deaf, hard of hearing and deafblind people is infrequent and inconsistent. Some respondents also noted that they had to initiate the conversation about communication support. A small number of respondents were aware of their rights and confident enough to be able to demand them. However, communication support needs to be proactively offered to enable the most vulnerable patients to realise their rights and maintain their dignity.

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“I didn’t request a loop system, I just muddled on through.” Person with hearing loss, Powys Teaching HB.

These findings echo the Board of Community Health Council’s 2013 Hospital Patient Environment report, which found 33 separate locations where hearing loops were not installed or were not working across 22 hospitals. These were at key ‘health access’ points, such as main entrances and reception areas (8).

Communication support takes many forms – interpreters, communicator guides and hearing loops, for example. Whilst booking an interpreter or communication support worker is triggered by the needs of individual patients, ensuring that hearing loops are working and that staff can operate these must be a matter of course.

79% of respondents who needed information in an accessible format were not asked about their information needs.

“Even in the eye clinic, no one has asked me about this.” Blind or partially sighted person, Cardiff and Vale UHB.

It might be expected that professionals working in sensory loss understand and anticipate the needs of their patients and the barriers they face in accessing information. Yet the comments made by respondents suggest that patients are facing the same lack of awareness and procedural barriers in specialist clinics as they are across healthcare services. This needs to change; sensory loss clinics should be leading the way in providing accessible communication and information.

Staff awareness

“Many of the staff made an effort when I had told them my hearing was poor but I had the curious impression that the more senior they were the quicker they forgot.” Person with hearing loss, Cardiff and Vale UHB.

“My understanding of what doctors at the clinic have told me is about ‘half and half’.” Deafblind person, Aneurin Bevan UHB.

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Whilst more than half – 56% – of respondents reported that most or all staff were able to communicate well with them, 7% found no staff could communicate well with them.

There is much to be praised in the statistic which shows that more than half of those surveyed found that most or all staff were able to communicate well with them. However, it is deeply concerning that a significant proportion of respondents found at least one member of staff unable to communicate well with them.

Respondents’ comments also suggested that it is in those most important of conversations – between the consultant and the patient – where vital health information is transferred, that effective communication breaks down. There are clear implications for patient safety in this respect. Sensory loss awareness training needs to be delivered at every level, not only to those delivering front of house services.

Secondary care environment

30% believed hospital layout was poor and made accessing information or finding their way around difficult.

“If I had to find the X-ray department, I wouldn’t have a clue.” Blind or partially sighted person, Cwm Taf UHB.

Poorly designed environments are a major barrier for people with sensory loss and make otherwise independent people dependent on guides and/or family members. In the focus groups with people with sight loss, navigating hospitals was identified as a major source of stress, whether attending for their own appointment, accompanying someone else, or visiting a friend or relative. Many said that it would be impossible for them to visit the hospital on their own.

Dignity can be further eroded if staff members have not received adequate training to guide patients effectively or will not offer assistance.

“They manhandle you in my experience. It’s very demeaning.” Blind or partially sighted person, Abertawe Bro Morgannwg UHB.

“They told me they’re not supposed to guide me, because of health and safety, so I have to wait for a porter to come and get me in a wheelchair.” Blind or partially sighted person, Cwm Taf UHB.

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Responses and feedback from focus groups identified a range of issues such as ticketing systems in clinics that were not accessible for people with sight loss, signage not being clear enough and an absence of braille on lift buttons. Responders suggested some easy and practical solutions that would make navigating hospitals easier:

“I have to go quite a long way to get to the dermatology clinic, and I can't see the numbers and signs on the doors/walls because they are always too high for me to be able to get close enough to, where I'd actually be able to read them. I can't see hardly any distance! I could do it on my own though, if only the numbers were lower down!” Deafblind person, Betsi Cadwaladr UHB.

Meeting patient’s needs: an example of effective practiceLaura has visited University Hospital of Wales several times in recent months both as an outpatient and inpatient, for an operation:

“Across the board, staff were helpful. When I was staying in hospital they made sure I knew where the bathroom was and where the buzzer was, so if I needed to go to the toilet I could make my own way there, but someone would also come to see if I needed help. They’d check in on me every now and again to make sure I was ok and if I needed a drink or anything – because, unlike other people, I can’t just go to and fro when I need something.

“In the clinic, nurses would come and tell me if they were running late, and where I was in the queue and keep me informed about things as they progressed. Generally they’d come and give me information, rather than me having to ask. If we had to wait a long time, one of the nurses would take me down to let my guide dog out on the grass, or give him water as well. If I was having a scan and the dog had to wait outside, then someone would look after the dog.

“All the staff were very good about guiding me when I needed it, and offering assistance rather than me having to ask.

“I wanted to say thank you to all the staff, but it didn’t seem like there was any way to record thanks!”

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Emergency hospital care

16 out of 24 respondents said all or most A and E staff could communicate well with them.

10 out of 13 respondents said all or most ambulance staff could communicate well with them.

Only 26 of those surveyed had received emergency or unscheduled care, either at Accident and Emergency (A and E) and/or using an ambulance, a significantly smaller proportion than those accessing scheduled Secondary care or Primary care. However, comments suggest that those who received emergency care were more likely to report that most or all staff were able to communicate effectively with them in comparison with the other two settings.

“They have more time one to one with you and they are close up... they are not being flustered by others waiting their services and lining up behind me.” Person with hearing loss, Abertawe Bro Morgannwg.

No patients remembered staff using a Pre-hospital communication guide.

Given the nature of emergency situations it is possible that the Pre-hospital communication guide was used without patients being aware or remembering its use. However, Ambulance and A and E staff should be reminded of all of the communication aids and training available to them and make use of these where appropriate.

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Concerns and complaints

58% of respondents did not know how to report a concern or complaint.

Of the 11 in the cohort who had reported a complaint, 7 found it difficult.

“Verbal only. Being Deaf as next of kin [to patient in hospital] would like to be informed what would happen with my dad. Had to go through my hearing grown up children. Don't have text nor email. I was approached by equality to send email to patient experience team. Since then I've not heard from them.” Deaf person, Cardiff and Vale UHB.

The respondents to this survey make it clear that navigating the feedback and complaints system is far from straightforward. Greater work needs to be done to raise awareness amongst people with sensory loss – both as patients themselves and as carers or relatives of patients – of how to raise a concern or report a complaint.

Requiring additional support – whether that is through receiving complaints procedures in accessible formats, being able to make complaints verbally, or needing an interpreter to make a complaint – should not be a barrier to providing feedback about services. This is especially true when the complaint in question is related to the barriers a person with sensory loss has faced in accessing services. Health boards should test feedback systems with people with sensory loss to ensure that they are accessible and that people can easily access information about how to report concerns and complaints.

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Recommendations

1. Health Boards (HBs) must accelerate action to fully implement the All Wales Standards for Accessible Communication and Information for People with Sensory Loss across all services.

2. NHS Wales, HBs and sensory loss organisations such as Action on Hearing Loss Cymru, RNIB Cymru and Sense Cymru, should initiate a campaign to raise the awareness of patients with sensory loss of their rights to reasonable adjustments within healthcare settings. This should include raising awareness of the complaints procedure.

3. Primary and Secondary care to implement mandatory induction training developed by NHS CEHR to staff at every level, including senior colleagues.

4. Primary care settings must act on the Standards by mainstreaming the practice of asking about sensory impairments and recording information and communication needs for new patients as well as updating records for extant patients.

5. Welsh Government and NHS Wales Informatics Service to enable the implementation of an alert or flagging system to ensure information is automatically produced in the correct format and communication support is available across all HB areas.

6. Primary and Secondary care must take immediate action to ensure that all healthcare environments are accessible for people with sensory loss. HBs must involve people with sensory loss in developing action plans to achieve this that detail both short and longer term steps.

7. HBs should test systems for reporting concerns and complaints with people with sensory loss to ensure that systems are accessible, and that people can easily access information about how to report concerns and complaints.

References(1) Action on Hearing Loss, Hearing Matters report, 2011.(2) Access Economics, Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK adult population, RNIB, 2009.(3) Robertson J, Emerson E. Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK. Centre for Disability Research, 2010.(4) Access Economics, Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK adult population, RNIB, 2009.(5) Action on Hearing Loss, Hearing Matters report, 2011.(6) Robertson J, Emerson E. Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK. Centre for Disability Research, 2010.(7) Accessible Healthcare for People with Sensory Loss in Wales, Final Report of the Steering Group, 2011.(8) Board of Community Health Councils in Wales, Hospital Patient Environment External Assessment Visit Annual Report 2013, 2013.

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Appendix 1: survey questions

Are health services meeting your needs?In November 2013, the Welsh Government launched new standards for health services in Wales to ensure they are meeting the information and communication needs of people with sensory loss. This includes: People who are Deaf or have hearing loss People who are blind or partially sighted People who are deafblind or have combined sight and hearing

impairments, causing difficulties with communication, access to information and mobility.

The accessible communication and information standards say that:

Surgeries and hospitals should ask you about your communication needs and record this information

Staff should be sensitive to your needs and trained to communicate effectively with you

A BSL or deafblind manual interpreter will be available if you request one;

Appointment letters and information will be available in a format that is accessible to you, such as large print, braille or audio;

Loop systems should be installed, and staff should know how to use them;

Hospitals should be well-lit and have clear signs so that it is easier to find your way around;

You should be able to make or change an appointment through a variety of methods, such as telephone, email, text messaging, text phones and websites.

We want to know if the standards have resulted in any improvements when you use health services.

Please complete the parts of this survey relevant to you.

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If you would like to provide specific examples of your experiences, please do so.

We will collect this information and present it as a report to the Welsh Government.

If you have any questions about the survey or would like assistance to complete it, please get in touch.

Please return survey responses by October 24 to:

Tess Saunders RNIB Cymru, Jones Court, Womanby Street, Cardiff, CF10 1BRT. 029 20 82 8564E. tess.saunders@rnib.org.uk

Katie ChappelleAction on Hearing Loss Cymru, Tudor House, 16 Cathedral Road, Cardiff. CF11 9LJT.029 2090 7516E. Katie.chappelle@hearingloss.org.uk

Catrin EdwardsSense Cymru, Ty Penderyn, 26 High St, Merthyr Tydfil, CF24 8DPT. 0300 330 9280 Text. 0300 330 9283E. Catrin.Edwards@sense.org.uk

About you1. Please describe your sensory loss:

Blind / partially sighted Deaf Have a hearing loss Deafblind / dual sensory loss

Answer:

1a (secondary question if recipient answers ‘deaf’ or ‘hearing loss’)How do you prefer to communicate? British Sign Language (BSL)

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Using a Loop system Lipreading Sign Supported English (SSE) Other

2. What is your postcode? Answer:

The following questions ask about your sight and/or hearing loss. Not all questions will be relevant to you. Please answer all of the questions that are relevant to you and answer ‘Not applicable’ to questions that are not relevant.

Visiting your GP3. Have you visited your GP surgery in the last year? Yes NoAnswer:

If you answered ‘Yes’, please answer Questions 4-10. If you answered ‘No’, please go straight to Question 11. 4. If you need information in an accessible format, did anyone ask how you would like to receive the information? (For example, appointment letters or information leaflets in braille, by email, in point 20 font) Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

5. If yes, did you receive information in the correct format? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

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6. If you have specific communication needs, did anyone ask you about the support you needed?(For example, do you need to a Hearing Loop, BSL interpreter, deafblind manual interpreter, lipspeaker, Communicator-guide) Yes No Not applicableAnswer:If you answered ‘Yes’, you may wish to note which form of communication support you require. Comments, or examples of experiences you have had:

7. If you requested communication support, was it available to you? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

8. Consider the staff you have encountered at your GP surgery: reception staff, doctors and nurses. Were they able to communicate well with you? You could think about how reception staff greeted you and kept you informed, or whether health professionals made sure you understood the information you were given. Choose the most appropriate statement: Most or all staff could communicate well with me Some staff could communicate well with me None of the staff were able to communicate well with meAnswer:Comments, or examples of your experience:

9. Consider the surgery building and its physical layout. Is it set out in a way that helps you to get the information you need and to find your way around easily?

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You could think about the signs or the lighting they use, alerts to let you know when it’s your turn, the level of background noise in the surgery, amongst other things.

Choose the most appropriate statement: The layout is well-suited to my needs and could not be

improved The layout is quite good but could be improved The layout is poor, which makes it difficult for me to find my way

or to get the information I need The layout puts me in danger and needs urgent improvementsAnswer:Comments, or examples of experiences you have had:

10. Thinking about your experiences over the past year, have you noticed any improvements in the way that your GP surgery communicates with you? Yes No Don’t knowAnswer:Comments, or examples of experiences you have had:

Planned hospital appointments and in-patient stays

11. Have you had a planned overnight stay in hospital or an appointment at an outpatient clinic in the last year? Yes NoComments, or examples of experiences you have had:

If you answered ‘Yes’, please answer Questions 12-18.If you answered ‘No’, please go to Question 19.

12. If you need information in an accessible format, did anyone ask how you would like to receive the information? (For example, appointment letters or information leaflets in braille, or by email, or in point 20 font) Yes No

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Not applicableAnswer:Comments, or examples of experiences you have had:

13. If ‘Yes’, did you receive information in the correct format? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

14. If you have specific communication needs, did anyone ask you about the support you needed?(For example, do you need to use a Hearing Loop, BSL interpreter, deafblind manual interpreter, lipspeaker, Communicator-guide) Yes No Not applicableAnswer:If you answered ‘Yes’, you may wish to note which form of communication support you require. Comments, or examples of experiences you have had:

15. If you requested communication support, was it available to you? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

16. Consider the staff you encountered at the hospital: reception staff, doctors, nurses etc. Were they able to communicate well with you? You could think about how reception staff greeted you and kept you informed, or whether health professionals made sure you understood the information you were given. Choose the most appropriate statement: Most or all staff could communicate well with me Some staff could communicate well with me

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None of the staff were able to communicate well with meAnswer:Comments, or examples of your experience:

17. Consider the hospital building, the ward or the clinic and its physical layout. Was it set out in a way that helped you to get the information you needed and to find your way around easily? You could think about the signs or the lighting they used, alerts to let you know when it was your turn, the level of background noise, amongst other things.Choose the most appropriate statement: The layout was well-suited to my needs and could not be

improved The layout was quite good but could be improved The layout was poor, which made it difficult for me to find my

way or to get the information I need The layout put me in danger and needs urgent improvementsAnswer:Comments, or examples of experiences you have had:

18. Thinking about your experiences over the past year, have you noticed any improvements in the way hospitals communicate with you? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

Emergency or unscheduled hospital care19. Have you been a patient at an Accident and Emergency clinic during the past year? Yes No Answer:

If ‘Yes’, please answer questions 20-23.If ‘No’, please go straight to question 24.

20. Did the staff ask you whether you had sensory loss?

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Yes No Don’t knowAnswer:Comments, or examples of experiences you have had:

21. If you are deaf or have hearing loss, did the staff use a guide (called the Pre-Hospital Communication Guide) to help you to communicate with them? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

22. Consider the staff you encountered at A and E: reception staff, doctors, nurses etc. Were they able to communicate well with you? You could think about how reception staff greeted you and kept you informed, or whether health professionals made sure you understood the information you were given. Choose the most appropriate statement: Most or all staff could communicate well with me Some staff could communicate well with me None of the staff were able to communicate well with meAnswer:Comments, or examples of your experience

23. Consider the hospital building and the physical layout of the A and E ward. Was it set out in a way that helped you to get the information you needed and to find your way around easily? You could think about the signs or the lighting they used, alerts to let you know when it was your turn, the level of background noise, amongst other things.Choose the most appropriate statement: The layout was well-suited to my needs and could not be

improved The layout was quite good but could be improved The layout was poor, which made it difficult for me to find my

way or to get the information I need The layout put me in danger and needs urgent improvements

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Answer:Comments, or examples of experiences you have had:

24. Have you received treatment from ambulance staff during the past year? Yes No Answer:

If ‘Yes’, please answer questions 25-27.If ‘No’ please go straight to question 28.

25. Did the ambulance staff ask you whether you had sensory loss? Yes No Don’t knowAnswer:Comments, or examples of experiences you have had:

26. If you are deaf or have hearing loss, did the ambulance staff use a guide (called the Pre-Hospital Communication Guide) to help you to communicate with them? Yes No Not applicableAnswer:Comments, or examples of experiences you have had:

27. Were the ambulance staff able to communicate well with you? Choose the most appropriate statement: Most or all staff could communicate well with me Some staff could communicate well with me None of the staff were able to communicate well with meAnswer:Comments, or examples of your experience

Reporting concerns or complaints28. If you wanted to report a concern or complaint about health services, would you know how to do this?

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Yes No Answer:

29. Have you tried to report a concern or complaint about health services in the last year? Yes NoAnswer:

If ‘Yes’, please answer question 30. If ‘No’, please go straight to question 31.

30. How easy was it to report a concern or complaint? Easy It was ok, but it wasn’t that straightforward DifficultAnswer: Comments, or examples of experiences you have had:

The impact of the standards31. Thinking about your experiences over the past year, have you noticed any improvement in the way health services communicate with you? Yes No Not sureAnswer:Comments, or examples of experiences you have had:

Thank you!Thank you for taking the time to respond. If you would like further information about the accessible healthcare standards, or would be willing to tell us more about your experiences, please provide your contact details. We will not share your details and our survey will remain anonymous when published.

Name:Preferred contact method:Contact details:

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