The NHS is failing deaf people

Deaf people have long experienced inequitable healthcare, and the linked account by parent Kirsten Abioye (doi:10.1136/bmj.p2615)1 illustrates the enduring problems that have caused a fundamental a breakdown of trust in the NHS. Kirsten describes how lack of appropriately trained staff left her 4 year old son isolated, frightened, and unable to communicate after his cochlear implant surgery.

Twelve million adults and at least 50 000 children are deaf, hard of hearing, or have tinnitus in the UK. Prevalence of hearing loss increases with age, rising to 70% among adults over 70.2 Some 87 000 deaf people use British Sign Language (BSL)3 and parents such as Kirsten Abioye are often discouraged by medical professionals from signing with their deaf child, particularly when the child has a cochlear implant. There is a belief among many health professionals that learning sign language adversely affects speech and language development, one that is not supported by empirical evidence.456

Sign language gives a deaf child the only guarantee of full access to language. It reduces the risk of language deprivation, defined as “a chronic lack of full access to a natural language during the critical period of language acquisition.”4 Despite this, it is often recommended as a last resort when speech has not developed. Late and inadequate exposure to BSL in the context of pre-existing language deprivation can lead to language dysfluency, a phenomenon where an individual is not fluent in any language.4 Dysfluency is linked to poor long term physical and mental health,789 so well intentioned advice can have a substantial negative impact on a child’s life.

The prevalence of mental health problems in the deaf community is 30-60%,10 compared with just over 15% in the general population.11 The many shortcomings in mental health services include inaccessible and inconsistent early intervention services for deaf people, and patchy geographical coverage by a limited number of community and inpatient specialist services. Disjointed referral pathways mean patients slip through the net when transitioning from child to adult services. Crisis lines are inaccessible, especially to individuals who use BSL. Such failings result in deteriorating mental health, and worse outcomes for many deaf patients.10

A 2023 report by the deaf health charity SignHealth10 called for a dedicated policy lead within NHS England with responsibility for deaf mental health; and an upgraded model of care for deaf mental health that requires a more proactive approach led by a full clinical reference group12 including deaf mental health experts. Other recommendations include a formal assessment of the need for regional specialist deaf mental health services with clear and seamless referral pathways to ensure a safe and efficient patient journey through the mental healthcare system across the UK. Sign Health’s reports, which highlight the healthcare inequities and other health service failures experienced by deaf people, should be required reading for all health leaders and providers.

Deaf adults also have worse physical health outcomes, with an increased prevalence of diabetes, heart disease, lung disease, and hypertension.913 Under-treatment, inappropriate treatment, inadequate patient education, missed diagnoses, and medication errors are all recurring themes, while the increased use of face masks that began during the covid-19 pandemic creates feelings of anxiety and isolation.1415 Many deaf patients avoid seeking medical care altogether and are five times more likely to have no confidence in their doctor. All of this is caused by barriers to access and communication, and costs the NHS an estimated £30m/year.13

In 2016 it became a legal requirement for healthcare providers to follow the NHS Accessible Information Standard (AIS), which aims to ensure that communication needs of disabled people are supported.16 A 2022 review reported that still only 11% of disabled people had equitable access to healthcare and only 19% had their communication needs met. One third of healthcare providers had never heard of the AIS or were unsure what it was, and 37% had not received any training on its requirements.17

Going forward, the AIS should be prioritised and embedded in induction training at all NHS trusts. Local services are readily available that can provide deaf awareness training. Such training should also be built into medical, nursing, and Allied Health Professionals training curriculums. Learning even the basics of BSL would aid communication with many people in the deaf community, and as far back as 2005 a Department of Health report suggested that financial incentives could be used to encourage mental health staff to learn BSL.18 This could also be applied to the wider healthcare workforce.

Every catchment area should have a designated primary care practice with a special interest in deaf healthcare. Some primary and secondary care centres have begun to use Video Remote Interpreting which provides remote BSL interpreters, but coverage is inadequate, and wider uptake is needed. Every healthcare provider should have a readily accessible stock of clear face masks for use when required.

Deaf people must not be excluded from the imperative of all health professionals to “first do no harm.”19