The lives of deaf patients are being put at risk due to communication barriers in the NHS, charities have warned.
Deaf people often misunderstand treatment plans and rely on family members to interpret diagnoses as there are no means for them to understand the information being given, according to the Royal National Institute for Deaf People (RNID) and SignHealth.
Some patients with hearing loss also avoid calling ambulances or visiting A&E because of communication problems.
The charities have called for “ministers to bring NHS accessibility into the 21st century” by making staff training mandatory and bolstering legislation.
A new report – Still ignored: the fight for accessible healthcare – claims the health service “often fails to meet the fundamental needs of people who are deaf or have hearing loss”.
This includes people who may need a British Sign Language (BSL) interpreter, notetakers or someone who is professionally trained to lipread at appointments, as well as an alternative to a phone call when contacting their GP.
The report said failing to make these adjustments violates rights set out in the Equality Act 2010, which states health and social care services must make adjustments to remove barriers facing deaf people.
A survey of 1,114 patients who were deaf or living with hearing loss was conducted by the charities for the report.
It found almost one in five required communication support, such as a British Sign Language (BSL) interpreter, lipspeaker or notetaker, at appointments.
However, the report claims 67% of sign language users and 62% of people needing other forms of support have been denied this at some point.
Of the those polled, almost half (47%) had given up trying to make an appointment due to communication barriers, while more than one in five (21%) had missed an appointment.
Almost a quarter (23%) received a delayed or incorrect diagnosis, while a third had failed to understand their diagnosis.
Crystal Rolfe, director of health 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.”
Meanwhile, almost one in 10 people with hearing loss said they had avoided calling an ambulance or attending A&E, while a quarter avoided seeking help for a new health problem.
The report claims awareness of the Accessible Information Standard (AIS) – which aims to ensure that NHS organisations are making health and social care information accessible – among workers is “poor”.
A poll of more than 400 healthcare staff, including GPs, nurses and doctors, found almost a third (32%) were unaware of the standard.
Ms Rolfe added: “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.
“It is time to give deaf people more access and control over their physical and mental healthcare. We are calling on ministers to bring NHS accessibility into the 21st century.”
RNID and SignHealth have urged the Government to prioritise work to improve the NHS AIS and make staff training for deaf awareness mandatory.
The charities have also called for the AIS to be made legally enforceable in the health service by strengthening legislation.
Dr Natasha Wilcock is a deaf doctor who works in palliative care.
She said: “Legally, professionally and ethically, deaf insight training should be compulsory for all doctors.
“Right now, the experiences of deaf people and people with hearing loss are shocking.
“I have met patients who have been referred to palliative care services who have not understood that they will no longer be receiving cancer treatment – they haven’t understood that they are dying.”
Philippa Wynne, director of engagement at SignHealth, said the report confirms that “the NHS is not working for deaf people”.
“Every day the health of deaf people is put at risk because their right to accessible information is being ignored,” she added.
“Deaf people’s health cannot be ignored any longer. Patients are being misdiagnosed. Lives are being put at risk. And, yes, people are dying.
“Enough is enough. The NHS must provide better access, and they must do this now.”
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.”
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