'I was told over the phone by a stranger that I have months to live'
A Welsh health board has apologised over the way they told a 54-year-old woman she had terminal cancer and months to live. Samantha Robinson-Byrne says she was left bereft and confused after a nurse informed her she had an inoperable tumour in haphazard fashion over the phone last year.
Ms Robinson-Byrne, from Barry, says she could not believe what she was hearing when she answered the phone at home in July to a nurse practitioner from University Hospital of Wales' (UHW) neurology department telling her: 'I wanted to talk to you about your tumour.' Unable to speak, Samantha asked the nurse to phone her husband Glyn who was then told his wife had a stage four glioblastoma and potentially eight months to live and would be passed on to Velindre.
Despite having scans and a biopsy in the previous weeks, the couple say they had been told by doctors at UHW that the lesion found on Samantha's brain was unlikely to be cancerous, which was the last thing they'd heard before the sudden phone call. In a statement the health board apologised to the couple and said the way they were told of Samantha's prognosis wasn't right.
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Last June Samantha, a civil servant, suddenly fell ill and had to stop work. Glyn, 51, called an ambulance to the house and Samantha then had two seizures within minutes of each other and then went into cardiac arrest. She was then put into an induced coma and rushed to UHW where she spent four days in intensive care and another four weeks on a ward.
Despite regular tests and scans doctors weren't sure what had caused Samantha's condition but felt she might have epilepsy and they discharged her with medication, Glyn explained. But three days later she had a third seizure and was rushed into A&E back at UHW.
'This time was different because she didn't recognise anyone and she couldn't remember a lot,' Glyn recalled. 'On that occasion they decided they'd do a lumbar puncture because they'd found a small lesion on Sam's brain after conducting a second round of tests. It came back clear and so the doctor said they'd discharge Sam again and if Sam wanted to she could have a biopsy. We were never told there was even a chance of cancer. They told us the scans and tests and the lumbar puncture had all come back clear.
'Sam decided she wanted to cover all bases and so she asked for a biopsy to be done. We waited a couple of days and we'd heard nothing. We weren't worried about cancer then after what we'd been told. But then we had a phone call from a clerical nurse from UHW who said: 'Hi there, I wanted to talk to you about your tumour.' Sam said: 'Sorry? No-one has mentioned anything to me about a tumour.' Sam said she couldn't have the conversation so then the nurse called me and told me Sam had stage four cancer and it was terminal and she had months to live, all really matter of fact.
'We were both in bits, inconsolable. Our world came crashing down. We got on with it and Velindre oncologist team have been fantastic with us but what happened has really stuck with Sam and she's got PTSD. She's also now having increased panic attacks which she's on heavy medication for. We have complained to the health board about how they told us of the news. Sam has told them she felt at the least she deserved to be sat down and told in person.
'On reflection we think we could have been told prior: 'Unfortunately there is a chance this could be cancer.' None of that happened. It was completely out of the blue and told in a throwaway manner. How do you tell someone over the phone they're going to die? We understand it's hard and not a nice thing to have to do. We're not saying the phone call would have ended all our issues. But we feel it could and should have been handled with more care."
Samantha said she felt she was told the most devastating news of her life "without any thought". "To me it's just been torture to be given that diagnosis through my mobile phone in such a way," she said. "I'd had the scans, tests and biopsy with no elusion that it was even a possibility. It puzzles me that we didn't have any preparation as to the worst case scenario. What I want to do now is to reach out and say: 'This shouldn't have happened and this shouldn't happen going forward. It destroys you. You shouldn't be told you're dying in such a way.'"
Samantha said her mother received news of her own lung cancer diagnosis by being sat down by a doctor who had a discussion with her, which she had expected for herself if she was to receive similar news. 'My mother had lung cancer and she was told appropriately at Llandough Hospital and the doctor sat with us and did it with care and thought and emotion," she said. "So I'd seen it done properly. In my case it was done in a blasé way and with no empathy."
Glyn added: "Sam knows she is going to die. Before that happens she wants to make sure the news she received isn't delivered to others in the way she received the news. It has really upset her and caused her a great deal of added stress. She wants others to be treated with more compassion. I would like the health to outline steps they have taken to ensure this doesn't happen again."
A spokesperson for Cardiff and Vale University Health Board said: 'We wish to offer our sincere apologies to Mrs Robinson-Byrne for the distress caused when receiving the difficult diagnosis. We acknowledge that, on this occasion, the news was not delivered in the most appropriate manner and a member of the clinical team has since spoken directly with Mr Robinson-Byrne to address the situation and offer an apology for their experience. As a health board we would welcome the opportunity to discuss any further concerns with Mr and Mrs Robinson-Byrne and our dedicated concerns team is available for contact both on email or over the phone.'
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