In early 2016, a few months after Elfreda Spencer, a 71-year-old Jamaican widow, came to London to visit her daughter, Barbara Wright, and her grandchildren, she started to feel breathless and tired.

When Spencer complained of a nagging pain, Wright took her to the GP.

“They said it’s cancer,” said Wright. “I’m there thinking, ‘oh my god’.”

Her mother was referred to Hammersmith hospital. It was June 2016. Spencer’s six-month tourist visa was just expiring; Wright had been applying to have it extended. Imperial College Healthcare NHS Trust, which runs Hammersmith hospital, sent Spencer’s family bills for £5,404 to cover the cost of running various tests, and demanded £150 upfront for a blood transfusion. The treatment was delayed while Wright borrowed the money from a friend.

But the biggest shock was yet to come. A letter from a consultant haematologist at the hospital confirmed that Spencer had been diagnosed with advanced stage multiple myeloma, recommending that while the disease was incurable, “she should start on treatment with chemotherapy as soon as possible, to avoid further complications by her disease”.

The letter added that response rates with treatment were more than 80%. Spencer’s leave to remain in the UK had expired at the start of June, but the letter warned against returning to Jamaica for the time being: “Travelling and any further delay to initiating treatment may result to new disease symptoms and complications, including renal failure … life-threatening infections and bone fractures.”

At the time, upfront charging for overseas patients had not yet been imposed nationally, so trusts could choose whether to demand payment in advance of treatment or afterwards. However, government rules state that urgent or “immediately necessary” treatment should not be withheld because of inability to pay.

But despite the hospital’s own consultant recommending chemotherapy start as soon as possible, Imperial demanded a £30,000 upfront deposit before treatment could begin.

Spencer’s family had no way of paying that kind of money. Desperate, they offered to pay £500 a month, much of it borrowed from friends and relatives, in order for treatment to start. The trust refused.

“They wouldn’t accept it,” Wright said. “They said no, ‘It’s £30,000 upfront or nothing’. It was just horrible – really disgusting, horrible. They wouldn’t look at mum, she was in so much pain. I said to them, ‘if mum was a dog, you lot would be tripping over each other to help her, but because she is a black woman from a different country, you lot treat her worse than a piece of nothing.’

“Why would you refuse £500 a month? So that somebody can die without dignity, why? Why?”

Facebook Twitter Pinterest Barbara Wright says her mother, Elfreda Spencer (seen behind in photo on wall), was denied her dignity by the NHS. Photograph: Teri Pengilley/The Guardian

Wright said that the demand for upfront costs came from the hospital’s immigration department. The fact that the treatment was urgently needed had no effect. “They didn’t care, that don’t matter. The fact that she is overseas, she’s a foreigner, that took priority over everything. As far as I’m concerned, they tell me she’s not entitled to nothing, she just needs to go back and die. That’s how I saw it.”

With Hammersmith hospital refusing to provide chemotherapy, Spencer’s family did not know where to turn. Wright was left giving her mother paracetamol for the pain.

This was all the treatment she received for her cancer for nearly 12 months.

By the following spring Wright had had enough. Her mother was often in pain. Regardless of the earlier advice not to travel, she wanted to get her mother back to Jamaica to see if she might be able to get treatment there.

Wright approached the Jamaican high commission, who instead advised the family to contact the UK-based charity Doctors of the World. This led to a referral to London’s Royal Free hospital.

Having gone nearly a year without treatment, Spencer found that her cancer had become terminal.

She was in and out of Royal Free hospital throughout the second half of 2017. However, her family was unhappy that she was not provided ongoing palliative chemotherapy, because she was not entitled under the government’s rules.

The Royal Free hospital did provide emergency care, but under government rules the trust has to subsequently try and recover these costs from the patient – resulting in another series of invoices for sums well beyond the family’s means.

“When they realised that we didn’t have money to pay how much thousands they were asking, they started treating mum like a piece of nothing,” Wright said.

A statement to the Guardian from the Royal Free London NHS foundation trust said: “Elfreda Spencer attended the Royal Free hospital on eight occasions between April 2017 and January 2018. She was admitted as an in-patient for a total of 18 days and at no point was treatment withheld.

“During this period, we advised Ms Spencer and her family that she was clinically well enough to return to Jamaica to receive treatment there but she refused, despite her visa having expired in June 2016. We made it clear that, as she was not eligible for free NHS treatment, she would be charged.

“The Royal Free London is required by law to recoup monies owed to the NHS for treating overseas patients. We have made repeated efforts to establish whether we can be reimbursed from Ms Spencer’s estate for the treatment she received but these have not been acknowledged.​

Imperial College healthcare NHS trust said in a statement: “We are saddened by Ms Spencer’s case. Like all NHS trusts, we are legally required to comply with rules on charges for overseas patients who are not eligible for free NHS care. We are looking into exactly what happened in this instance and will be following up with Ms Spencer’s family. We would not comment further on an individual case without permission from the family.”

Elfreda Spencer died at the Royal Free hospital on 4 January 2018, aged 73.

As far back as August 2017, Spencer was receiving letters from a debt collection firm hired by Royal Free, ACT Credit Management, threatening legal action if she did not pay more than £10,000 in medical bills. This was sent when she was still suffering from terminal cancer.

Wright said she still gets emails about these bills. “I’m not even looking at them because where am I going to get all their money from? I don’t have them kind of money, and it’s not in my name anyway, and for what? They never help her. They didn’t give her no chemo treatment.”

Nobody can say whether Elfreda Spencer would have lived, or lived longer, had she been given the treatment that her doctors said she needed. But what is clear is that the NHS, interpreting rules set by the government to save a sliver of its annual budget, did not do everything it could to help her.

“It just tears us apart so bad,” said Wright, “it’s just ripped our heart out to be honest. I mean, if she had been given some form of help and she died, at least I would have felt better to know that she come here, she took sick, and she died with some dignity. But I feel my mother died without dignity.”