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Deaf patients face systemic discrimination when it comes to learning about their own health due to NHS failings, with some not understanding that they might have a terminal illness, according to a damning report.
The study by the Royal National Institute for Deaf People (RNID) accuses the NHS of “routinely failing” deaf people.
A survey of more than 1,000 people in England who are deaf or have hearing loss found that almost one in 10 had avoided calling an ambulance or attending A&E due to their disability, and a quarter had avoided seeking help for a new health concern.
The survey also found that about half of sign language users reported not having understood their diagnosis, or how their treatment worked. NHS staff said a lack of training, time and a poor IT system were major factors in being unable to provide these accessibility requirements for deaf people.
The report also highlights instances of deaf people receiving particularly poor NHS care. In one instance, a woman was not provided with an interpreter, which meant she was unaware she had had a miscarriage.
Another example was a patient receiving no food or water during a hospital stay as they could not hear staff offering it to them.
Sharing her experiences as part of the report, Dr Natasha Wilcock, a deaf doctor who works in palliative care, said she had met patients who had been referred to palliative care services who, due to the lack of communication, did not understand they were dying and no longer receiving cancer treatment.
Last year the NHS was accused of “dragging its feet” on bringing in new accessibility procedures, leading to disabled people routinely struggling to access healthcare and facing cancelled appointments.
Crystal Rolfe, the director of strategy at RNID, said: “Imagine not being able to understand a cancer diagnosis, or having to rely on a family member to tell you that you’re seriously ill or even dying. The horrifying truth is that too many deaf people in England today don’t have to imagine it – it’s happening to them in real life.
“The NHS is systematically discriminating against people who are deaf or have hearing loss: it’s a national scandal. It is not acceptable that deaf people and those with hearing loss are being routinely failed by an NHS that neglects their communication needs. Lives are being put at risk because of communication barriers, delays and out-of-date systems that are not fit for purpose.
“The government needs to urgently address these issues, make staff training mandatory and overhaul current NHS systems, so that everyone can access their own health information in a way that makes sense – equal access to healthcare is a human right.”
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Louise Ansari, chief executive at Healthwatch England, said: “Everyone should receive healthcare in a format they can understand. People who have sensory impairments and learning disabilities have been waiting too long for the NHS to meet their communications needs, which are underpinned by the Equality Act.
“We have asked the government to strengthen legislation to ensure the NHS fully complies with the standard and we urge ministers to publicly confirm their commitment to address this important equality, safety, communication and patient experience issue.”
An NHS spokesperson said: “The experiences mentioned in this report are shocking and unacceptable – all NHS services have a legal duty to provide clear and appropriate methods of communication to ensure that patients, including those with a sensory impairment such as hearing loss, and their families or carers can fully understand everything they need to about their treatment and care.
“NHS England is committed to meeting its responsibilities with the accessible information standard and will continue to support organisations to ensure it is implemented in a consistent way, including with the upcoming publication of a new patient safety framework highlighting the importance of ensuring people’s communication support needs are met.”
