Bungay woman Pip Lee, who is deaf, tells of ‘appalling’ interactions with the NHS and calls for widespread training

A deaf woman from Suffolk was left unaware that she was being scanned for a potential brain tumour due to poor communication at an NHS appointment.

Pip Lee, 56, of Bungay, near Beccles, has shared her story as part of a charity report released today which reveals ‘serious and widespread’ healthcare failings affecting millions of adults in England who are deaf or have hearing loss.

Extra support for patients with hearing difficulties to access health services is a legal requirement, however the report by RNID and SignHealth found for many they had never even been asked about their communication needs.

For Pip, far from being inclusive and accessible, most of her frequent interactions with NHS healthcare settings disregard her communication needs and leave her feeling isolated.

She has had more appalling experiences than she can recount, but she said the ‘icing on the cake’ was with ENT (ear, nose and throat) and audiology - the very specialisms you would expect to set a good example.

She wants to see widespread training across the NHS to bring about better understanding of deafness and hearing loss.

Speaking about a recent NHS appointment, Pip, a hearing aid user and lipreader, said she asked if she could use a pager, which was being rolled out to alert patients rather than having to rely on hearing a nurse call you in.

She said: “It came to my appointment time and my pager hadn’t buzzed, so I sat tight.

“I vaguely heard someone shouting, and when I looked up everyone was looking at me. I waved at the shouting nurse, and it turned out she had been calling out my name. I explained that my pager hadn’t buzzed, and she apologised, repeating what the receptionist had told me: that nobody knew how to use the pagers, even though they’re really simple.

“But the situation got worse when I went in to see the consultant. He refused to take off his facemask, so I couldn’t hear anything he was saying.

“He picked up his iPad to use the speech-to-text function, but the text it produced was gobbledygook. I left only knowing that I would need an MRI of my brain, but when the post-appointment letter came, I was shocked to read it was to look for a possible tumour associated with my hearing loss and tinnitus.

“Because the medical staff did not meet my communication needs, I missed that important information. Thankfully I didn’t have a tumour, but the experience was up there as one of the most stressful, frustrating and patronising appointments I'd ever had.”

Pip said there were occasions when her interactions with the NHS had been positive, but it was rare, and when it did happen it was ‘like a miracle’.

She began experiencing tinnitus in her 20s and eventually lost her hearing in both ears. She also lives with a progressive neurological disorder that causes stiffness and weakness, so she has a lot of contact with NHS healthcare services.

The report revealed seven out of 10 deaf people and those with hearing loss have never been asked about their information and communication needs when accessing NHS care, and, even when they are asked, too few receive the support they ask for.

More than half (54 per cent) of people who are deaf or have hearing loss have had to rely on either a partner, family member or friend to relay information or interpret for them at a healthcare appointment, effectively removing their right to privacy and dignity in their own healthcare.

And the survey findings show the broader impact that a lack of communication support can have, including avoiding calling an ambulance or attending A&E, a health problem being made worse or failing to understand their diagnosis.

One example cited in the report is of a woman who, owing to a lack of interpreter support, was left unaware that she had suffered a miscarriage.

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.

“The NHS is systematically discriminating against people who are deaf or have hearing loss: it’s a national scandal.”

RNID and SignHealth are calling for urgent action from the Government to bring NHS accessibility into the 21st century to stop lives being put at risk

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.”

The Government’s Department of Health and Social Care was approached for comment.