‘If a GP had seen my mum, they’d have caught it sooner’
As a campaign launches to persuade those worried about symptoms to go to a doctor, Peter Stanford meets a family who lost their mother after her tumour went undiagnosed
It couldn’t have happened at a worse time. In April 2020, just as Covid was causing the NHS to focus all its energies on tackling the emerging pandemic, to the exclusion of almost all of its usual activities, Gill Dutton, a 65-year-old hospice community care worker from Tamworth in the Midlands, developed a cough that just wouldn’t go away.
She had enjoyed a lifetime of good health, along with three children and three granddaughters, and was a keen walker with her husband in whatever spare time she had. But the cough worried her. “She didn’t say anything to us at the time,” says her daughter, Lisa Mcblane, “but my mum wasn’t a fusser. She wouldn’t have wanted to waste the GP’S time unless she was concerned.”
What Gill knew was that her mother, father and aunt – the last two, like her, non-smokers – had died of lung cancer. The local surgery, though, wasn’t offering any face-to-face appointments because of lockdown. In the brief phone consultation she had, no question of any family history was asked and she didn’t raise it.
She had probably had Covid already, she was told, and the cough would clear up in its own time. It was the start of more than six months of delay before it was diagnosed in October as stage 4 lung cancer.
Gill had been due to retire that December and had plans about how to use her new leisure time. Instead, she was given two and a half to three years to live.
“It was devastating news for her and for all of us,” says Lisa, an NHS midwife from Belper in Derbyshire. “If only it had been caught sooner.”
That is a realisation many other families are also facing up to right now, as the scale of the Covid cancer backlog becomes clear. Almost three in 10 cancer patients had their treatment disrupted by Covid, a recent survey by Cancer Research UK found – and many are still delaying seeking advice over a fear of burdening the NHS.
Last week, the NHS launched a new campaign urging the public to talk to their doctor about worrying symptoms, specifically of abdominal, urological and lung cancer. Research by the Institute for Public Policy Research suggests that cancer survival rates have been set back by up to eight years because of the shutdown of surgeries and services, and focus on Covid treatment. It predicts an extra 4,500 avoidable deaths likely this year as a result of late diagnosis, such as happened in Gill’s case.
It took two more visits to the GP – the second face-to-face – before Gill was sent for a chest X-ray. That came after she had been on a walking holiday in September, when her breathing had got so bad, she described it to her daughter as overwhelming. On her return, a GP initially told her it was long Covid.
When she went back again the following month, she was referred for an X-ray specialist – but only, she was informed, to try to ease her anxiety. After a two-week wait for her X-ray, Gill had no sooner got home from the hospital than the telephone rang asking her to come back at once for a CAT scan. The NHS was finally kicking in with the urgency required if cancers are to be diagnosed early and survival rates to remain high.
It was found that Gill had a tumour in one lung, plus cancerous cells in her lung fluid and in her lymph nodes.
“Why weren’t the signs spotted earlier?” asks Lisa. “Why didn’t any of those GPS ask her if she had any family history of lung problems? I can only think that their judgment was clouded by the pandemic.”
At Christmas, Gill started chemotherapy. “It was horrific,” says Lisa, “and she was very, very poorly, but we were not able to go in and see her because of the Covid rules. We are a very close family, and it was heartbreaking not to be able to hold her and hug her.”
Though Gill responded to her two rounds of chemotherapy, she ended up back in hospital in July with a chest infection. Earlier this month, she died at home, surrounded by her family.
“We are heartbroken to lose her and still in shock,” says Lisa. “I can only hope others don’t get treated as my mum was, and that more people will get the early diagnosis they need to be able to survive this horrible disease.”
In particular, she believes GPS need to get back to face-to-face consultations as soon as possible. “As midwives, we have managed to find Covid-secure ways of seeing patients. Without it, we can’t read patients’ body language, so that when they tell us they are fine, we can see that they clearly aren’t. If a GP had seen my mum face to face early on, they would have known she was worrying about something and sent her for an X-ray sooner. We know that cure rates with lung cancer are high if you catch it early.”
The announcement by Health Secretary Sajid Javid that £10 billion is being pumped into the NHS to “bust” its backlog caused by Covid came too late for Gill Dutton and others like her. The community diagnostic hubs and new scanner units will, however, benefit the seven million people who some experts estimate failed to come forward with worrying symptoms during the lockdown for fear of having to go into hospitals that were full of Covid patients.
Carla Faria, a media consultant and coach from south-west London, had a much better experience of GP care than Gill when, back in March 2020, she found a lump in her breast. A face-to-face consultation saw her referred within five days to the Royal Marsden Hospital.
“The care I have received has been exceptional all the way through,” she says, “but still Covid put a significant spanner in the works.” Her breast cancer is caused by a mutant gene BRCA2, which runs a greater risk of breast and ovarian cancers. “When you have a diagnosis of BRCA2,” she explains, “the usual recommendation is a bilateral mastectomy”, removing both the breast with the lump and the other breast as a preventive measure.
However, that was not possible because of Covid restrictions in hospitals aimed at protecting both staff and patients from infection by keeping time spent in the operating theatre to an absolute minimum by prioritising only essential – and therefore not preventive – surgery.
Carla therefore had to undergo two separate operations, the first in May 2020 and the second in February of this year. “It has meant two lots of recovery time of six to eight weeks,
‘I can only think the doctors’ judgment was clouded by the pandemic’
two lots of anxiety, and two lots of trauma to my body.”
The Covid restrictions also ruled out the reconstructive surgery that would normally be done at the same time as the mastectomy. It would have required a 10-hour operation. Instead, Carla was offered implants because they took less time in theatre.
“I was not thrilled, and hopefully will be able to go back at a later date for reconstruction when all of this is over. But in a pandemic the reality is there was no choice. So I prefer not to see it as something personal, something I didn’t want that happened to me, but something that just happened. That way I can deal with it as best I can.”
For information and support on lung cancer, visit the Roy Castle Lung Cancer Foundation site (roycastle.org) Carla tells her story on Victoria Derbyshire’s podcast, And Then Came Breast Cancer, at futuredreams.org.uk