The importance of British Sign Language
BMJ 2024; 384 doi: https://doi.org/10.1136/bmj.p2615 (Published 28 February 2024) Cite this as: BMJ 2024;384:p2615Linked Editorial
The NHS is failing deaf people
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Dear Editor
ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group established to foster a partnership between researchers and people with lived experience of hearing loss, and to inform and shape hearing research [1]. This letter draws on the insights of members of ALL_EARS@UoS to respond to articles that identified the need for the NHS to improve services and accessibility for d/Deaf and hard of hearing people [2,3]. We offer practical solutions for supporting d/Deaf or hard of hearing people in healthcare settings. Implementing these solutions across the NHS will promote better healthcare access and contribute to meaningful change.
We need to promote deaf awareness in healthcare settings. People with hearing impairment face significant barriers to effective communication in healthcare settings [4,5]. These barriers and health inequity are greater [6,7] in underserved communities, including the diaspora communities. Barriers [4,5] raise the risk of delayed detection of disease, and can increase the detrimental effects of long-term conditions including cardiovascular disease, diabetes, and dementia [8].
With around 12 million adults in the UK live with hearing loss or tinnitus, a significant proportion of healthcare appointments are with people who may struggle to interact effectively with their appointment. We, members of ALL_EARS@UoS, have used our lived insight to offer practical solutions for supporting d/Deaf or hard of hearing people in healthcare settings. Implementing these solutions across the NHS will promote better healthcare access and contribute to meaningful change.
Increasing deaf awareness and understanding of the challenges of living with hearing loss, by staff across the NHS is essential. The Deafness and Hearing Loss Toolkit [11], developed in 2021 on behalf of the Royal College of General Practitioners, is a valuable resource. It includes information and training in paediatric audiology, tinnitus, dementia and hearing loss, and balance and vertigo, and provides guidelines for the screening and assessment of hearing loss, a vital first step for many who go to their GP surgery for help when experiencing deafness or dizziness. Simple but effective changes to communication [9], such as increased use by health professionals of British Sign Language (BSL) interpreting apps [10] would increase access for the Deaf Community [3] and be of wider benefit.
There are opportunities, some listed below, at every stage of the patient journey to make positive changes, promote deaf awareness and improve accessibility for d/Deaf or hard of hearing people.
Making an appointment
● Increase awareness and consistent use of flagging systems on medical records to indicate the communication preferences and accessibility requirements of people. Make this visible across all NHS departments.
● Increase awareness and implementation of the Accessible Information Standard [12,13].
● Increase awareness and use of Relay UK [14], a free service to help people communicate over the phone.
● Provide an option to use electronic messages rather than phone calls.
● Increase awareness of how to link other devices, such as a mobile phone, to hearing aids and cochlear implants [15] using Bluetooth connectivity
Reception at surgery/clinic
● Use electronic boards to display patient names in clinics as well as calling name.
● Ensure a telecoil (loop) system is fitted, working, advertised through signage and maintained.
Appointment
● Check preferred communication style.
● Use of Speech-to-text and BSL interpreting apps to improve communication between patient and healthcare professionals within the clinic.
● Provide personal listener/assistive listening devices for patients to use in appointments.
● Check the patient has understood the outcome of the appointment.
● Offer a printout of test results to ensure all key information is received by the patient.
These interventions mostly require increased awareness by health professionals rather than new resources, we hope through sharing our lived experiences we contribute to achieving this.
References:
1. Hough, K. et al. Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on. Res Involv Engagem 10, 38 (2024).
2. Durno, J. The NHS is failing deaf people. BMJ (2024) doi:https://doi.org/10.1136/bmj.q480.
3. Abioye, K. The importance of British Sign Language. BML (2024) doi:doi:10.1136/bmj.p2615.
4. Barnett, D. D., Koul, R. & Coppola, N. M. Satisfaction with health care among people with hearing impairment: A survey of Medicare beneficiaries. Disabil Rehabil 36, 39–48 (2014).
5. Tsimpida, D., Kaitelidou, D. & Galanis, P. Barriers to the use of health services among deaf and hard of hearing adults in Greece: a Cross-Sectional Study. Eur J Pers Cent Healthc 6, 638 (2018).
6. Taylor, H., Dawes, P., Kapadia, D., Shryane, N. & Norman, P. Investigating ethnic inequalities in hearing aid use in England and Wales: a cross-sectional study. Int J Audiol 62, 1–11 (2023).
7. Swords, C. et al. Socioeconomic and ethnic disparities associated with access to cochlear implantation for severe-to-profound hearing loss: A multicentre observational study of UK adults. PLoS Med 21, e1004296 (2024).
8. Tsimpida, D., Kontopantelis, E., Ashcroft, D. M. & Panagioti, M. Conceptual Model of Hearing Health Inequalities (HHI Model): A Critical Interpretive Synthesis. Trends Hear 25, (2021).
9. Maru, D., Stancel-Lewis, J., Easton, G. & Leverton, W. E. Communicating with people with hearing loss: COVID-19 and beyond. BJGP Open 5, 1–3 (2021).
10. SignVideo. SignVideo. https://signvideo.co.uk/.
11. Royal College of General Practitioners. Deafness and hearing loss toolkit. https://elearning.rcgp.org.uk/mod/book/view.php?id=12532 (2021).
12. NHS England. NHS England. Accessible Information Standard: Making health and social care information accessible. https://www.england.nhs.uk/about/equality/equality-hub/patient-equalitie... (2016).
13. Marsay, S. Accessible Information: Specification v.1.1. www.england.nhs.uk/accessibleinfo (2017).
14. Relay UK. Relay UK. https://www.relayuk.bt.com.
15. Satchwell, C. Lived Experience of Using Bluetooth with a Cochlear Implant. ALL_EARS@UoS Website https://generic.wordpress.soton.ac.uk/all-ears/group-members-ideas-conte... (2023).
Competing interests: No competing interests
Re: Realising the potential of the NHS Accessible Information Standard
Dear Editor
Kirsten Abioye’s plea for greater awareness of deaf patients’ needs in the NHS (BMJ 2024;384:p2615) is part of a much larger cultural shift required.
According to official figures, 20% of the UK population have a self-declared disability. Many will experience challenges in communicating effectively with NHS and other care services.
That includes those with sensory impairment, learning disabilities, mental health difficulties, hand and finger manipulation challenges and any condition or circumstance, such as stroke or advanced ageing, causing additional communication problems. These issues also apply within the healthcare workforce.
Your associated Editorial points out that since 2016 the NHS Accessible Information Standard (AIS) has been a legal requirement on all health and social care providers. It was designed to support self-care, shared decision-making, participation in screening programmes, and active involvement in society more generally.
Providers are obliged to follow five steps – to “Identify, Record, Flag, Share and Meet” the online and in-person needs of all patients with communication challenges. The passing of the Standard was a cause for celebration and a significant prompt for change.
I engaged closely with NHS England as one of two Patient Advisers during the development of AIS and was delighted when it came into force.
I am myself a patient with sensory impairment, registered as deaf/blind. I have struggled with access to information within the NHS and in my contacts with health services, including those specialising in my condition. I still regularly receive information in inaccessible formats, resulting in me missing appointments, tests, referrals etc to the detriment of my own care.
I am not alone. A formal review of experience in implementing the Standard, launched in 2022, suggests widespread ignorance across agencies and the medical profession more generally of the issues, of AIS requirements and of best (or even basic) practice.
A revised Standard was to be introduced in April 2023. Campaigning groups have asked at least for the review’s evaluation evidence to be published – a request declined by NHS England. They also asked for a revised timetable and process for updating the Standard itself. Nothing has emerged so far.
Since 2016, I have promoted AIS through voluntary work with the Royal Colleges of GPs and Physicians, the British Computer Society and the British Standards Institute. I was also an adviser to the legal team behind the challenge to the Department of Health and Social Care over issuing shielding letters in an inaccessible format to a blind person during the Covid pandemic in 2020.
For me the most promising contribution is coming through training and education. In 2022 I was approached by the new Kent and Medway Medical School to contribute to their first module for medical students on communications with disabled patients and other aspects of AIS.
The students have worked on simplifying AIS guidance and on raising awareness. Working together we have developed simple ways to link the recording of needs directly with ways to deliver against them. We have also looked to incorporate AIS principles in other processes, for example recording communication preferences in Hospital Passports.
We have approached the AIS Online Learning team with these and other ideas and have been invited to join the AIS Review Team. We hope to expand the ‘learning package’ associated with AIS in its next iteration, adding examples, ideas and more advice to assist the move from principle to practice.
This emphasis on simple steps, learning and support, for services already having to cope with so much, and the enthusiastic involvement of the next generation of practitioners, encourages me to think that the AIS will now really start to realise its potential.
Competing interests: No competing interests