By the seventh appointment, Emma Jones was growing desperate. For weeks she had watched her happy, healthy daughter, Ruby, become more and more ill. She was 17 and had barely ever been sick – suddenly, she was tired all the time, had an odd pain in her shoulder, and every morning when she woke her slim face would have puffed up overnight, leaving her looking as if she had been “beaten up”.
Over a six-week period in 2019, Ruby’s symptoms grew gradually worse. Emma took her back to the GP again and again, each time hoping someone would join the dots and escalate her case. One GP recommended an allergy test, which Emma and her husband Dillon arranged privately rather than waiting for what would have been a lengthy NHS referral.
The test showed an allergy to tree pollen and dust; by then, Ruby’s symptoms seemed too extreme for an allergy. “She was really tired and started to get these weird bruises on her abdomen which we couldn’t explain,” recalls Emma, 53. That bruising, Emma now knows, should have been the clearest red flag that something was seriously wrong.
It would take seven appointments – two of which were conducted over the phone, all of which were with different doctors – before Ruby’s case was escalated. Those six weeks, her parents say, were crucial. A delay in diagnosing her with the blood cancer that by then was tearing through her body meant the difference between Ruby being able to receive potentially life-saving treatment and deteriorating at speed. She died on May 15 2020.
Analysis by the British Medical Journal (BMJ) of remote consultations has found conducting GP appointments over the phone leaves patients at risk. The BMJ found “deaths and serious harms” had occurred between 2020 and 2023 as a result of wrong or missed diagnoses and delayed referrals. Up to a third of GP appointments are now virtual; increasing numbers of face-to-face appointments has now been a priority of several health secretaries.
It comes as Cancer Research UK calls on the Government to diagnose cancer earlier. In its manifesto, launched this week, the charity reports that “almost half of cancers in England are diagnosed at a late stage”.
“Around 1 in 5 cancer patients are diagnosed via emergency routes. Earlier cancer diagnosis saves lives, and we are calling on the UK Government to implement measures to reduce late-stage diagnosis in England.”
Doctors routinely told Emma not to worry about Ruby, even when her own research was throwing up terrifying diagnoses. One GP – a locum who “didn’t look at her” – clearly had decided she was “a hysterical hypochondriac mother”.
“I’d Googled her symptoms and if you put into Google ‘sore shoulder, swollen face’ it suggested it could be lung cancer, that a tumour pressing on what’s called the superior vena cava can cause those kinds of symptoms.
“I think on about the fifth appointment I just came out with it and said, ‘I’ve Googled these symptoms and I’m really really concerned. It suggests lung cancer.’ And the doctor virtually laughed at me and said, ‘not in a 17-year-old. You just don’t need to worry about that.’”
Emma, an environmental consultant from London, is, in her words, “not somebody who sticks my head above the parapet and complains about things”. But as her daughter got more and more sick, she grew frantic. She asked the GP to refer Ruby for a chest x-ray. “They said it’s not worth the risk of the radiation for someone so young. Gosh, those words just hung in my head as she went through radiotherapy before her stem cell transplant.”
On the seventh visit, a new GP checked Ruby’s pulse. Her resting pulse was 120, which was unusual. “He said obviously something really odd is going on, because we’ve seen you seven times in the last two months and before that we hadn’t seen you for ages. So something’s up.”
A couple of hours later, the GP called. He’d spoken to colleagues at King’s College Hospital. They wanted to see Ruby straight away.
“They did a chest x-ray and I remember standing behind that screen, and I’m not a medical professional, I know nothing about x-rays, but you could just see this thing on the x-ray and I could feel the staff around me kind of freeze,” says Emma.
“I thought yep, there it is, there’s that tumour that I knew was there.”
When Ruby first went to the GP she was 17. In her young life she had rarely come into contact with her local south London surgery. That she returned seven times in six weeks should have been evidence enough that something was wrong.
“I know it must be really annoying when people Google symptoms,” says Emma. “In hindsight, Dr Google hadn’t quite got it right. It wasn’t lung cancer, but it was a nine centimetre tumour in her chest. It was producing exactly the same symptoms.”
Emma feels Ruby’s prognosis could have been different had the GP surgery been obliged to follow Jess’s Law. The law, named for Jessica Brady, who died in December 2020, would require a case to be elevated for review after a patient contacted their GP surgery for the third time.
Speaking to The Telegraph this month, Jessica’s parents, Andrea and Simon, told of her battle to be taken seriously by the local surgery, which she contacted 20 times before eventually being diagnosed in hospital with stage four adenocarcinoma with an unknown primary. She died just three weeks later.
The Bradys created a petition to improve the detection of cancer in young adults. They were invited to meet Steve Barclay, the then health secretary, and received a verbal apology for the failures that led to Jessica’s fatally late diagnosis.
A Department of Health and Social Care spokesman told The Telegraph discussions between the Bradys and the department were “continuing”, saying it was clear “opportunities to diagnose Jessica sooner were missed”.
“Our sympathies are with the families of those involved in these tragic cases, including Jess’s family, who have met with ministers and officials to discuss how to prevent similar tragedies happening in future. Further discussions are continuing between the family and department.”
NHS guidance, they said, “clearly state[s] general practices must respect a patient’s preference for a face-to-face appointment, unless there are good clinical reasons not to”.
For Emma, Jess’s Law would have meant that “by that third appointment Ruby would have been referred, which could have made all the difference”.
“Obviously, she didn’t survive her cancer. It didn’t respond to the standard treatment – they had to switch her to much more intense treatment. She then had to have a stem cell transplant, and none of it stopped the cancer.
“If they’d started eight weeks earlier, maybe they could have stopped [it], we’ll never know.”
Jess’s Law has struck a chord with families such as Emma’s, who feel their loved one could have been saved or their life prolonged had they been diagnosed earlier.
In many cases, youth and prior health seemed to be a reason for GPs to dismiss their symptoms, rather than serving as a sign something must be seriously wrong. Some contacted their GP multiple times; others were let down by remote appointments.
Andrew Nash’s 26-year-old son, David, first contacted the GP on October 14 2020 after finding lumps on his neck. He had a phone consultation, during which the doctor told him not to worry too much, but to call back if he developed a fever. “In the meantime she arranged bloods to be taken, but the earliest she could arrange that for was November 2,” says Andrew.
“On October 23, David is now calling again, complaining of ear pain. The nurse over the phone diagnoses it as an outer ear infection, but clearly she did that without actually examining him.”
David’s family now know that by then he was suffering from mastoiditis, an infection of the bone behind the ear. It would eventually trigger a brain abscess. The nurse prescribed him an ear spray.
Five days later, David rang the GP again to say he was passing blood in his urine and had a fever. “They wouldn’t see him. Despite being a young man, a UTI being a very unusual condition, the doctor remotely prescribes him for a urinary tract infection.”
At this point, Jess’s Law would have required David’s case to be elevated for review. Four days after that third appointment, David called the GP again. He’d had a fever for nine days.
“He was complaining about feeling nauseous, pain behind both eyes and debilitating neck pain. He said every time my heart beats the pain is unbearable. […] Here is a patient who 19 days earlier has inflamed lymph nodes and now the same patient is complaining of debilitating neck pain. Well, all of these are red flag symptoms.”
David was instructed to do a Covid test, even though he had already had a negative polymerase chain reaction (PCR) test. He called NHS 111 five times and was eventually taken to hospital in an ambulance. He died two days later.
“Jess and David were both young and all of a sudden, out of nowhere, were contacting their GPs,” says Andrew.
Both fell ill during Covid, when face-to-face consultations plummeted, as GPs increasingly closed their doors for fear of spread of infection. An inquest into David’s death found there had been “a missed opportunity to direct David to seek face-to-face care during his GP appointment”.
The coroner’s report said: “Had he been directed to seek face-to-face or urgent care by the GP Practice it is more likely than not that he would have undergone neurosurgery approximately 10 hours earlier than he actually did; which at that time it is more likely than not would have been successful”.
The Royal College of GPs (RCGP) is working with the Bradys to develop “new educational resources to further support GPs with cancer diagnoses”. Professor Kamila Hawthorne, chairman of the RCGP, said: “It’s critical that symptoms are picked up on quickly and appropriate action taken, including rethinking the approach if problems persist over multiple consultations.”
Prof Hawthorne stressed there would be “significant implications across the NHS around the call for ‘three strikes and refer’”, but she said GPs “want to deliver the very best care they can to all their patients”.
Failures in primary care pre-date lockdown. Joe Rawcliffe went to the GP six times in eight weeks in 2019. Like Jessica, his increasingly debilitating symptoms were dismissed as being something minor. He died three months after he first started feeling unwell.
Joe first went to the GP complaining of a sore neck and numbness in his arm. “They said, ‘Oh there’s nothing really wrong with you’,” says his father, Richard.
“He had physio on his neck, that helped a little bit. He just carried on feeling unwell and then towards the start of November he started to struggle to swallow.”
The GP diagnosed acid reflux; two weeks later, Joe made another appointment – his fourth. “They then referred him for a gastroscopy to have a look down his throat to see if it was acid reflux. That came back negative. At this point he’s now struggling to eat anything solid. He was struggling a little bit with his mobility.
“Back to the GP again. They put him on some tablets for what they thought was this acid reflux. Gradually [he’s] getting worse and worse, struggling to eat anything at all at this point.”
By December 2019, Joe was distressed and “struggling to understand why he couldn’t get across to the GP that there was something wrong with him, that it wasn’t acid reflux”. His dad offered to go with him to his sixth and final appointment.
Across the six visits, Richard says, Joe saw “at least three GPs”.
“Our practice had gone from being a family GP that we know personally to being bought up by a much bigger multi practice group and at that point we’re on flying GPs.
“The GP that we saw the final time barely looked at him. He said I’ll change his tablets. I said look, he can’t physically swallow. What’s the point of giving him a tablet? It’s not acid reflux. ‘No no, it definitely is, try a different tablet’.”
Like so many parents who have lost children to late or missed diagnoses, Richard feels a terrible sense of guilt that he wasn’t able to diagnose his son himself. That, of course, was the job of the medical professionals, not a worried father.
“Had I gone away and Googled all the various symptoms that Joe had, I would have probably got to the answer which on his death certificate says: brain stem infarction and glioma.
“Brain stem infarction is where the blood supply is cut off from the brain stem. In Joe’s case, it was because of the cancer, and that [affects] things like swallowing, mobility, numbness in limbs, all those things. But you trust the GP to know these things, rightly or wrongly.”
Richard took Joe to A&E on December 18 2019 when his speech began to slur. A scan eventually revealed he had a brain tumour. “He underwent a six-hour operation to try to remove some of the cancer on December 31. He was sedated for his own wellbeing on the 30th. He never woke up from the operation. And he died on January 3rd.”
Jess’s Law, Richard says, would have meant Joe’s case was reviewed soon after his initial interaction with primary care, not discovered “almost by accident in acute care, as the result of an admission through A&E, as a result of the failures of primary care”.
“Had they caught it even three, four or five weeks earlier – I’m not a physician but I would suggest that his chance of surviving longer, and [attempting] other forms of treatment, would have been significantly higher.”
Richard, Andrew and Emma will never know for sure how different things could have been for their children had Jess’s Law been in effect. They are all clear about one thing: it can’t possibly have made things worse. And it might – just might – have saved them.