The procedure has been performed successfully, it added
London: A teenager who begged doctors to take her health fears seriously in the months before she died from a rare cancer was told by medics to “stop Googling your symptoms”.
Bronte Doyne died on March 23, 2013, aged 19 – just 16 months after she first complained of severe stomach pains.
In text messages, tweets and personal diary entries, the student expressed her worries that medics were not acting as her health deteriorated.
Doctors dismissed her concerns, leaving her desperate for someone to take her seriously. In one tweet in July 2012, Miss Doyne made a cry for help:
Finally, after pleading to be taken seriously, she was admitted to hospital where she passed away 10 days later.
Now bosses at the Nottingham University Hospitals NHS Trust have admitted they “did not listen with sufficient attention” and that they must embrace the “internet age”.
Miss Doyne, of West Bridgford, Nottingham, was first admitted to hospital in September 2011 with suspected appendicitis. But she was eventually told she had fibrolamellar hepatocellular carcinoma, which affects only 200 people globally each year.
The family found information about the cancer on a website endorsed by the US government and discovered it had a high chance of recurrence but, when they raised the issue, doctors told them to stop searching the internet for information.
Now Miss Doyne’s mother Lorraine, 50, has criticised “a woeful lack of care and empathy” from doctors.
She said: “Bronte was denied pain relief, referrals were hugely delayed and efforts by her family to gather information and understand Bronte’s prognosis were handled in an evasive and aloof manner.
“Her fears that her symptoms over the preceding months before she died were cancer-related were proved right. The messages from Bronte are all her own words and I believe that’s more powerful for people to understand what she went through.
Bronte Doyne (R) with her sister Kerrie and mother Lorraine (Newsteam)
Miss Doyne had just celebrated her 18th birthday when she was diagnosed with the cancer, which attacks the liver, almost four years ago. Over a 16-month period, she was told by doctors she would survive and had nothing to worry about following surgery.
But Miss Doyne and her family knew through their own online research that there was a high chance the cancer would return and eventually claim her life – which it did within months.
Mrs Doyne, of Edwalton, Nottinghamshire, said: “We had no information forthcoming and the only sources we found were through our own research. We found a website for the Fibrolamellar Cancer Foundation, which is based in the United States, and it included an international forum.
“It’s not just some pathetic website on Google, it’s been endorsed by the White House in publications, and was the only contact we had to get some awareness about this disease.
“But that information was dismissed here. I told the clinician that I knew what was happening to my daughter and something needed to be done but I was just told to ‘stop Googling’.”
Mrs Doyne said they were led to believe the surgery would cure the cancer but the online information suggested otherwise.
She added: “We asked after the surgery if they were suspicious the cancer could come back but their response was ‘how will that help Bronte?’ We were told they will be seeing her over the next 20 years – it made her feel relieved but she still didn’t feel quite right.
“We weren’t given any information by the hospital about this but we did know it had a really poor outcome, yet they did nothing and just left us to wait and dismissed her concerns.”
She underwent liver resection surgery in December 2011. But 11 months later, after doctors had told her she was fine, she wrote in her diary In November 2012: “Feeling sick for months now. Tired of this feeling crap. Hospital not worried so trying to get on with it.”
Six weeks before her death, she was advised by her GP to go to hospital as an emergency case if her symptoms worsened.
But when she got to Nottingham’s Queen’s Medical Centre, Miss Doyne was told by a doctor that she did not need to be seen.
She wrote: “I got so angry because the doctor was so rude and just shrugged his shoulders. He gave me a sarcastic comment like you can sleep here if you want but they won’t do anything. So I just have to wait for another hospital appointment.”
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Her concerns about feeling like “something’s not right” continued to be ignored. Doctors put her weight loss down to being “part of a skinny family”.
It was only after Miss Doyne “chased results” from a six-monthly MRI scan that she found she had an abdominal growth and was transferred to the oncology department.
In one diary entry less than a month before her death, Bronte wrote: “Mum tried to talk to my consultant but he didn’t give her much help.
“She even had to ask him when I was going to get my appointment for the oncologist. Really don’t think he likes my mum asking questions.”
Her growing desperation in the weeks leading to her death was evident, as she wrote: “I feel things aren’t good but no news from hospital. Need answers. Want to know what’s going on. Something’s not right. I’m sick of this.”
Patients are increasingly turning to the internet to self-diagnose
Miss Doyne was eventually referred to the Hogarth ward, a Teenage Cancer Trust unit, where she stayed for 10 days before she died .
Now her mother is working alongside health chiefs to improve how medics deal with patients and the hospital board has promised to learn from her daughter’s case.
NUH medical director Dr Stephen Fowlie said: “We explored all potential treatments, including participation in trials at other centres when her cancer returned.
“Sadly, there were no further surgical, chemotherapy or radiotherapy treatment options for Bronte’s very aggressive cancer.
“We apologise that our communication with Bronte and her family fell short. We did not listen with sufficient attention. We should have referred Bronte to the expert support available from the Teenage Cancer Trust much sooner.
“We are sharing the learning from Bronte’s experience. Lorraine is assisting us to improve how we help patients.”
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Keith Girling, deputy medical director at Nottingham University Hospitals NHS Trust, said: “This has put the spotlight on how the internet age and the availability of information can challenge the way we respond to patients who may be very well informed, but can remain frightened and vulnerable.
“Through the internet, patients and families now have access to worldwide information about health conditions and possible treatments as they seek the best for themselves and their loved ones.
“The best information is helpful and accurate, based on evidence of what works. These sites help patients make choices, as they become experts in their condition.
“But some sites are inaccurate or misleading, and may give false hope or cause distress. They may not be relevant to the unique clinical and other circumstances of the patient.”