Deaf patient who felt doctors 'fobbed him off' pulled tumour out of his throat

A deaf man who pulled a tumour out of his own throat shared his horrific experience in a bid to improve health care for people who use sign language (BSL) to communicate.

John’s Story – shared with members of NHS Forth Valley’s board on Tuesday – highlighted how difficult he had found it to get a face to face appointment with a GP and how he felt he was being “fobbed off”.

In the video, John Barrett explains that video calls with doctors had been “awful” for him.

He said: “I really need to be in a room, face to face and with an interpreter, so we can have a three-way, clear conversation.

“With video it just goes over my head – it’s not suitable for deaf people.”

Speaking to a disability liaison officer, John explained how he had he felt “something wasn’t right” and phoned the doctor to make an appointment.

He was given a video appointment and prescribed antibiotics, which had no effect, then an appointment with a nurse and more antibiotics.

He said: “But then, all of a sudden, I was by myself and I started having breathing problems.

“The doctor hadn’t actually checked my throat at this point but I knew there was something wrong.

“I actually pulled out a tumour. I didn’t know at the time what it was but the blood was pouring out of my mouth.

“I went to the hospital and eventually, after two weeks, they found out that I had cancer.

“But before that, I feel the doctor fobbed me off a little bit. I feel they could have caught it early, saved me having chemo, radiotherapy, possibly surgery.

“I don’t blame the doctor – they just need a bit more deaf awareness instead of being a bit dismissive.”

Since the diagnosis, John has been supported by the Disability, Equality and Access Service, which is based at Forth Valley Sensory Centre in Camelon, Falkirk.

In the video, John was asked if its services had made a difference to him.

He said: “I’ll tell you the truth. If you didn’t have this interpreter service, NHS service, we’d be lost – we’d really struggle.

“My mental health would certainly be through the roof.

“One call from the hospital and you organise everything for me.”

John also highlights that it is particularly difficult for BSL users to book appointments by telephone and GPs need to find a system that works for deaf people.

He says it is not uncommon for surgeries to forget to book an interpreter and then offer to “lipread or write things down”.

“It’s just not good enough,” he said.

While John says the Disability, Equality and Access Service has made a huge difference locally, he believes “it really needs to expand” to become 24/7.

“It’s such a small team and the NHS needs to be aware that a lot of deaf people rely on this service,” he said.

John also highlighted his experience in hospital when an interpreter had been booked, only for the consultant to turn up early and refuse to reschedule.

The chair of NHS Forth Valley board, Neena Mahal, said it was a “very moving story with key messages about deaf awareness”.

Members heard that deaf awareness training is currently taking place.

The work to improve services locally is a partnership between NHS Forth Valley and Falkirk Council as part of their BSL Plan, which has recently been updated.

The first plan was produced in 2015 but the report to the board says the latest version has listened to the experiences of people like John in a bid to make improvements.

In the report, members were told: “John’s journey reflects our commitment to improvement, showing how his involvement has already contributed to meaningful changes that enhance accessibility and support for the D/deaf community.”

The full video of John’s story, as shown to the Board is here.