NHS access for D/deaf and hard of hearing users . Research findings and recommendations
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Contents Executive Summary
4 -6
Approach
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Medical model of deafness
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Social model of deafness
10 -11
Cultural model of deafness
12 -13
Survey demographic
14 -15
Survey results
16 -19
User experiences
2 0 -2 5
Service barriers
2 6 -2 9
Service requirements
3 0 -3 1
Service recommendations
3 2 -3 3
Final recommendations
3 4 -3 5
Acknowledgements The authors would like to thank all individuals, organisations and public bodies who participated in and contributed this research. Illustrations by Jonathan Whittingham Stock Photography by Cotton Bro
May 2021 Kirsty Ramsay-Hogan 2
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Executive Summary
This report presents research findings about D/deaf and hard of hearing people’s experiences of NHS service barriers. Our hypothesis is that D/deaf and hard of hearing people would be likely to have greater difficulties in accessing healthcare than the general population. As outlined by Sign Health’s 2013 Deaf Health Survey Report there is very limited research and evidence base of health access issues among D/deaf and hard of hearing people in the UK. This report therefore presents an opportunity to contribute further to this. The findings of this report are focused on 42 survey respondents and 8 D/deaf and hard of hearing user interview participants. The ‘uppercase D’ Deaf is used to describe people who identify as culturally Deaf. Wherever possible data has been collected from a range of participants living in councils across the UK with a variety of ages to get a balanced view of the views of the general D/ deaf and hard of hearing population. Further details of the demographic can be found in on pages 14-15. The findings of this report are not necessarily representative of the views of the D/deaf and hard of hearing population overall. 4
Aims
The main aim of this report is to provide initial evidence of access issues for D/deaf and hard of hearing patients and demonstrate the need for drastic and co-ordinated change within NHS services. This is in opposition to contributing to already existing research solely about the impairment or individual user needs.
Diagrams and further detail are available on pages 8-13. To support this approach, we have outlined ‘Service barriers’ as opposed to ‘User needs’, and carefully considered language and methodology throughout this research process.
Research methodology Literature review
A new approach
This report recognises the need to focus on barriers which exist in the service and not the impairment itself. While user need is always priority, it is the barriers in the service issues that require adaptation. This approach is influenced by the following models which have been developed by deaf people: • Social model of deafness: systematic barriers, derogatory attitudes and social exclusion are the disabling factors, not the deafness itself • Cultural model of deafness: deafness is a linguistic and cultural minority community rather than a “disability group”
Research into ‘frameworks’, NHS Trusts system, SignHealth Deaf Health Survey Report, Scottish BSL 2019 Landscape Review.
Survey
Participant breakdown information found on page 14-15.
Qualitative interviews
Participant breakdown: 8 D/deaf and hard of hearing users 3 Translation companies 1 National Registers of Communication Professionals working with Deaf and Deafblind People (NRCPD) 1 Health Improvement Practitioner for NHS Trust Board (Deaf) 2 NHS Service Designers (Hearing) 2 Service Designers (Hearing) 2 User Researchers (Hearing)
The research was carried out during the pandemic however includes experiences from during and before pandemic. All content is anonymous and names have been changed.
Key findings
This research draws attention to the fact many D/deaf and hard of hearing people are facing service barriers everyday. These are the key findings:
Service barriers relating to interpreting issues means D/deaf people are being put at risk. For example on two separate occasions when a British Sign Language interpreter could not be provided: • A Deaf user was misdiagnosed due to communication issues which then resulted in her spending 8 months in hospital with a spinal injury • Another Deaf user received prescriptions but did not know what it was for and had to ask their parent to call to find out on their behalf
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66%
of D/deaf and hard of hearing survey participants were not offered communication support when they booked an appointment.
87.5%
of D/deaf user interview participants reported not being provided with British Sign Language interpreters when they requested one. They also reported this occurring on more than one occasion.
D/deaf and hard of hearing users said they struggle to book appointments with their GPs when there are no alternatives to telephone contact. GPs often do not know how to book a British Sign Language interpreter, according to D/deaf users.
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NHS advisory bodies lack Quality Standards concerning D/deaf and hard of hearing people.
For example: National Institute for Health and Care Excellence is an official body who develop quality standards and evidence-based guidance and advice for the NHS. Out of their 196 documents to date, there is no published guidance and advice for supporting D/deaf and hard of hearing patients.
Some NHS Trusts provide more accessible services than others.
Conclusions
These research findings indicate that there are many service barriers within the NHS for D/deaf and hard of hearing people which creates health and social inequalities. The findings suggest that bettering this is an urgent matter.
Recommendations
• More research: what are the roles and responsibilities of healthcare providers and stakeholders when providing an accessible NHS for D/deaf and hard of hearing users? How can the service be improved in a sustainable way for all stakeholders?
• A new approach: focus on improving services for D/ deaf people as opposed to contributing to existing research and design which focuses on the impairment Further recommendations and details can be found on pages 32-35.
Limitations
The report also investigates the fact that the analysis conducted has limitations. Some of the limitations include: • Sample size: Small sample size of survey respondents and user interview participants could reduce validity and statistical power of findings. • Access to hearing stakeholders: Due to a prioritisation of D/deaf and hard of hearing users for user interviews, less emphasis was placed on securing hearing stakeholders. 3 translation companies were interviewed and no BSL interpreters and hearing healthcare professionals were interviewed. • Bias: As the majority of research respondents are D/deaf or hard of hearing, this poses a risk of cultural bias. • Online survey language: As the online survey questions were only available in English and not British Sign Language, this may have reduced variability and number of Deaf respondents.
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Approach
Medical model: deafness is a personal tragedy to be fixed, cured or eradicated Social model: systematic barriers, derogatory attitudes and social exclusion are the disabling factors, not the deafness itself Cultural and linguistic model: deafness is a linguistic and cultural minority community rather than a “disability group” These are very brief summaries and more detail can be found in the diagrams in the following pages. As user needs should be at the core of every service, it is important to understand the theoretical approaches to deafness as these are reflections of how deaf people can be treated within services and within society as a whole. 8
The medical model is generally considered problematic and ‘backward-looking’ and has been rejected by D/deaf and disability groups. As this model originated within medical environments, unconscious biases towards the medical model is commonplace within existing health services. Examples include: • Responsibility being placed on the D/deaf or hard of hearing (HOH) person to arrange their own communication support for their appointments • Audiologists (healthcare professionals specialising in hearing loss) calling out D/ deaf and HOH patient names at beginning of appointments • D/deaf and HOH people left with challenge of contacting inaccessible GP receptions where there is no way to email, text or communicate via British Sign Language • Healthcare staff not receiving training about D/deaf and HOH peoples needs Presently the social model and cultural model of deafness are progressive views encouraged and advocated for by D/deaf and disability groups. Traces of these approaches can be found in recently designed systems, such as the introduction of ‘Do you have any access needs?’ question in the NHS Covid Vaccine booking system.
The focus is on the deafness LM A C
ME DI
To better understand how to approach this report, models of deafness rooted in social sciences were examined. A ‘model’ means the lens through which deafness is perceived. The model through which the deaf person is viewed can impact how they are treated as well as their own self perception. This report focuses on three existing models:
ODEL
M
Difficulties based on disability are the responsibility of the deaf person The deaf person should adapt to fit into society Views deafness as a personal problem that needs to be fixed Labelling people as being deaf
As this model originated within medical environments, unconscious biases towards the medical model is commonplace within existing health services. Examples can be read on the left hand side.
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Focus is on the individual
SO CI A
Social model of deafness
L
D O M
It’s the responsibility of businesses and society to reduce and ultimately remove barriers
People with deafness are seen as a valuable part of the world
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EL
M
Identifying barriers and developing solutions
Traces of this approach can be found in recently designed systems, such as the introduction of ‘Do you have any access needs?’ question in the NHS Covid Vaccine booking system.
Society should adapt to include deaf people in all activities
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Cultural model of deafness
MMMMM
Based on feedback from D/deaf users, NHS Greater Glasgow and Clyde Board now allow D/deaf users to select which British Sign Language interpreter they’d prefer for their appointments. This is an example of the Cultural Model approach.
Recognition of British Sign Language (BSL) Deaf community as a linguistic minority Inability to hear is not seen as a “loss” or something that negatively impacts quality of life Respect, value and support for a community with its own language, values, history and culture ‘Uppercase D’ Deaf used to describe people who identify as culturally Deaf
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Survey demographic
42
participants
41
Deaf or hard of hearing
This survey was conducted to get an overview of the barriers. Participants were found by sharing with existing D/deaf contacts and contacting D/deaf organisations within the UK.
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Council Areas
Hearing
MMMMMMMMMMMMMMMMMMM MMMMMMMMMMMMMMMMMMM MMMM
A hearing participant was included in this survey as they were a child of a deaf parent and answered on behalf of their deaf parent.
Age groups 18 - 24
29%
24 - 44
33%
45 - 64
26%
65 +
12%
Total number of council areas England Barnet 1 North East Somerset 2 Birmingham 1 Brighton & Hove 1 Colchester 1 Leeds 1 Leicestershire 1 Manchester 1 North Tyneside 5 Northampton 1 Selby 1 St Albans 1 St Helens 1 Stratford-Upon-Avon 1 West Suffolk 1 Wolverhampton 1 Northern Ireland Belfast West 1 Craigavon 1 Newry 2 Scotland Angus 1 Dundee 1 East Dunbartonshire 1 Edinburgh 1 Falkirk 1 Fife 3 Glasgow 3 Highlands 1 Midlothian 2 Tayside 1 Wales Castell-Nedd Port Talbot 2
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Survey results What is your preferred communication support for appointments?
BSL interpreter 48% Family/friend 25% None/lipreading 23% Email 4%
The variety of preference in this result indicates why it is important to ask what user communication needs are. While independence is priority for some, others feel more comfortable bringing a friend or family member. The option to choose their preference is what establishes autonomy and ultimately defines ‘access’.
Did NHS offer you communication suport?
34%
YES
66%
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These findings demonstrates inconsistent communication support service systems within the NHS. It is hypothesized that more research from a larger sample size would further evidence the inequality among NHS Trusts and further emphasise the need for a national mainstream communication support service.
NO
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Survey results If you did not have communication support, why not?
It takes too much time and effort to arrange it, that’s why I prefer my parent to help me out
I am able to attend appointments independently and staff support me by facing me so I can lip-read them
It happened quickly
Have to arrange with an interpreter from a company. The public only provides an interpreter sometimes
I am never able to book a BSL interpreter for my appointment
The person I was seeing wasn’t aware I was deaf
They said they didn’t know anything about it but I had booked a BSL interpreter when I booked my appointment for my covid injection
Never needed one as I can follow them fine and during the pandemic they were happy to take masks off so I could lip read I did not know they offered communication support
I ended up having to book it myself, they told me it was my duty to do so
It wasn’t an option for a five minute appointment, they wanted me to do a telephone appointment but that was impossible for me
I am quite independent, and I know that I will not always have the support offered so can often do it alone
My GP only accepts phone calls - receptionists are incredibly unhelpful if someone else has to ring for me
They offered the telephone to discuss through appointments which is impossible for me and for face-to-face a doctor / nurse wearing a mask without a window so I had to call them with my mum as a translator
I don’t know why, it was at the start of the pandemic I recently started using an online interpreter for my appointments instead
I do not need an interpreter however I do find it hard to hear the doctor sometimes and worry about getting the information wrong On occasions the surgery has forgotten to book an interpreter 18
Too much hassle for me to ask for one after past experiences
I am profoundly deaf so I don’t always need help and have never heard of communication support being available
I only communicate with English myself but I bring my partner along if it’s possible 19
User Experiences Shona
Deaf, healthcare assistant, 26 “I wasn’t planning on getting a BSL interpreter for my covid vaccine, until I went for my flu jab and the appointment made me really anxious. People weren’t called in in the order of the allocated slots and I didn’t know whether they were shouting my name or not. Once I got into the appointment and explained I was deaf, it was fine. The nurse took her mask down to explain the side effects. But after that experience I realised it would be much better to have an interpreter for the coronavirus jab, as from what other healthcare staff were telling me it was a really busy procedure. To book an interpreter I got in touch with the BSL translation company myself. They said the head nurse had to fill out the form, I couldn’t do it myself. So I filled out the whole form for the head nurse to save her time and just asked for her signature at the end. I asked the translation company to reply to me and not my head nurse. They contacted my head nurse later (even though I had asked them not to) to say that they couldn’t provide an interpreter for me as my jab appointment was on a Sunday. It was really frustrating. I ended up getting coronavirus anyway so I couldn’t go to the appointment! But I made sure to book my next jab appointment on a weekday so that I could have an interpreter. It was good to have the interpreter there, it gave me a sense of security and I didn’t have to worry about making a fool of myself.”
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User Experiences George
Deaf, construction worker, 59 “I do have problems when making appointments. I have to get my son or daughter to ring them to make appointments, either with the hospital or my doctor. I don’t like to keep asking them as they are busy with their own lives. When they were students my son was very busy with exams and it put pressure on them. I like to have my own independence and I hate it when GP receptionists tell me to get family members to ring like they think I am stupid or something. Or when they give you a landline number to ring. When I heard about SignLive (*online video interpreting service) I asked my GP centre if they could do it but they said no. I said you must have some kind of communication for deaf people, like video calls. They say they do but they don’t do it for you! The reception ignores me, they keep saying we will do it but then they don’t. They tell me if you want an appointment with the GP you’ll have to come in and talk to the receptionist to make an appointment. I told them “what if I am too ill to come in?” and they just shrugged their shoulders like ‘don’t know, get family or neighbour to ring in’. It gets me very angry. I am treated s***! It is the bloody 21st century now and still nothing for disabled people! Also it’s a pandemic now, so it’s worse. I don’t feel like telling the doctor anything, just suffer in silence even if you’ve got serious health conditions you might as well drop dead, no-one will know or care. Sorry but I am very upset that I can’t do anything about it but they really need the NHS to be more supportive towards deaf people.”
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User Experiences Neil
Hearing, child of deaf adult, 33 “The NHS said they could not locate an interpreter and so then my Mum was misdiagnosed and sent home. She continued to struggle. She asked me to interpret at the next appointment. It was later identified she had suffered a severe spinal injury to which she then had to remain in hospital for 8 months. This time frame may have been avoided if she had been given an interpreter from the beginning and immediately stabilised.”
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Service barriers Interpreting Users mostly have issues with interpreting barriers when: 1. BSL interpreters do not appear at appointments despite the D/ deaf patient requesting one 2. An unreliable system and previous bad experiences means many opt to go without a BSL interpreter or bring a friend or family member instead. This means: • Incorrect information (such as prescription or diagnosis) can be received wrong when an interpreter is not present • The D/deaf or hard of hearing patient cannot choose to be fully independent • Family members or friends have to translate sensitive information (e.g. a cancer diagnosis or mental health concerns) 3. There is no confirmation message when a BSL interpreter has been booked. This leads to anxiety, uncertainty and further mistrust in the service 4. GPs do not know how to book a BSL interpreter 5. There is no option to select a specific interpreter (i.e. gender or preference based on previous experiences) 26
My mum comes with me to appointments as the hospital doesn’t always provide an interpreter. Luckily I’m quite open with my mum, however there are some things that are quite private that I don’t want to say in front of my mum. In my last appointment I had to speak about dark topics and it was very hard for my mum. - Kit
I heard nothing from them, there was no confirmation that an interpreter had been booked for my coronavirus jab and they weren’t responding to my emails. I got stressed out again. - Diane
I worry about picking up information wrong. Like once when I didn’t have an interpreter I got a prescription but didn’t know what it was for. - Peter
I went through a lot of effort to request a female interpreter. When I arrived, nothing, no interpreter. The doctor had to write everything down but in such a high standard English that I didn’t understand, and they didn’t understand me when I tried to translate British Sign Language onto paper. It was awful. - Esra
They said “sorry, we can’t book an interpreter because we don’t know how to”. - Ross 27
Service barriers Reception Users mostly have issues with reception barriers when: 1. GPs telephone D/deaf and hard of hearing patients with important information when the D/deaf patient does not communicate via telephone 2. GPs do not provide any alternative form of contact to telephone: e.g. email, text or a live BSL translation app 3. D/deaf and hard of hearing patients cannot be independent and have to rely on friends/family members to phone their GPs on their behalf 4. Check in technology operates with voice only and no text on screen
I had someone I didn’t know keep calling me and I had to give it to my dad to answer. Turns out it was my GP. That has happened a few times. I wanted to be independent but I had to give it to my dad to answer. Sometimes they text me but not always as sometimes they don’t always remember I’m deaf. - Sian
I always have to phone to make an appointment. Thankfully I have SignLive (*a BSL video relay service) and I can make appointments through that. They usually send a text message afterwards confirming my appointment. - Robert
Access and independence is important for me. However this is not possible with the NHS. My partner always calls to make appointments for me. My GP used to have a computer to check in instead of speaking to the receptionist which was good however during the pandemic this isn’t possible. - Zaid
3 weeks ago I went to a doctors appointment with my mum and there was a computer at the reception where we had to check in. I thought it was broken but it had started talking and I didn’t know, I only realised because my mum told me. She had to tell me what the computer was saying. - Natalie
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Service requirements Communication
Access
Independence The service must ensure users can contact health services through text, email, a signed translation app, or other channel
The service must ensure every D/deaf and hard of hearing user receives the same standard across all NHS Trusts
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The service must ensure users can communicate during their appointment with their health practitioner with their chosen method - BSL, English or other
The service must ensure users have the ability and autonomy to opt for communication support, a family member/friend or no communication support
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Service recommendations
Access
Implement a national mainstream communication support service for D/deaf and hard of hearing patients
Urgent introduction and review of existing Quality Standards for D/ deaf and hard of hearing people in advisory bodies for NHS
A national programme of training for NHS professionals on how to accommodate D/deaf and hard of hearing service users
Employ a D/deaf person onto every NHS Board
Produce incentives for NHS Trusts to provide high standard quality of care for D/deaf and hard of hearing patients by introducing deaf/and disability focused standards into award schemes. For example - adding to existing award schemes such as the NHS Parliamentary Awards, CHKS Top Hospitals, or introducing smaller award schemes for local GPs
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Communication
Make SMS and email contact option mandatory for all GP practices
Ensure all GPs/hospitals can always be contacted via BSL interpreting services or Text Relay
Regulate British Sign Language interpreting fees for NHS appointments
A national programme of training for GP receptionists on how to accommodate D/deaf and hard of hearing service users. This would include: • How to book British Sign Language interpreters • How to use British Sign Language relay interpreting apps or Text Relay services • Deaf awareness training which emphasises D/deaf and hard of hearing users should be contacted via chosen channel expressed in their communication needs requirements
Independence
Include a database with communication needs for all. This database would include details to a “what are your needs?” question and their interpreter preferences
Introduce service which automatically books/ accommodates communication needs as opposed responsibility being left to D/deaf or hard of hearing patient
Send confirmation texts/emails to D/deaf users when an interpreter has been booked
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Final recommendations
1 New Approach As emphasised in ‘Approach’, it is encouraged that all stakeholders focus on improving services for D/ deaf and hard of hearing people as opposed to contributing to existing research and design which focuses on the impairment.
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2 More Research More research into roles and responsibilities of service providers e.g. healthcare providers, BSL interpreters and translation companies - are they providing the best possible service for D/deaf and hard of hearing users and how can it be improved in a sustainable way for all stakeholders?
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