Patients with suspected cancer are waiting months for diagnosis because of hidden waiting lists or falling into a “black hole” after referral, England’s patient champion warns this weekend.
Admin errors, unexplained cancellations and delayed scan reports are among factors contributing to longer waits, according to Healthwatch England, a committee of the Care Quality Commission.
A recent analysis by the organisation found that one in seven patients who had been referred to a specialist for cancer checks by their GP were still waiting to hear about next steps a month after the request was sent.
Even after a referral, Healthwatch said some suspected cancer patients were not given appointments or correctly added to a waiting list, instead falling into what it has termed a “black hole”.
Healthwatch said the research raised concerns about “hidden” delays to treatment that were not captured in official figures. The warning comes as NHS services have been hit by a series of strikes, with junior doctors on Wednesday announcing a four-day walkout in August. About 819,000 operations, appointments and procedures have been postponed.
Louise Ansari, its chief executive, said: “For cancer patients, any delay in referrals and diagnosis can put people’s lives at risk. Healthcare leaders need to address delays in progressing referrals, particularly for cancer.”
She said, “poor processes and disjointed communications” can lead to lost referrals. Healthwatch is calling for support for GP teams for timely referrals, better patient communications and referral trackers.
In March, a public accounts committee report warned that cancer waiting times were at their “worst recorded level”. The latest figures from NHS England show that in May 2023 only 59% of cancer patients received a first treatment for cancer within two months of an urgent GP referral, where the target is 85%.
The analysis from Healthwatch England examined the experiences of 385 patients who were referred for suspected cancer, or expected to be referred, in surveys conducted between August and October last year.
It said some patients reported having to “chase” the GP or hospital teams repeatedly. Others found referrals had been refused, stalled or cancelled without their knowledge.
Two coroners in England and Wales have recently issued prevention of future death notices over delays suffered by cancer patients who died. This month, a coroner wrote to a London NHS trust warning of “a lost opportunity” to diagnose and treat a cancer patient who died after three outpatient appointments were cancelled.
Alison Hewitt, senior coroner for the City of London, said Peter Harris, 73, died of lung cancer and organ failure after diagnostic results were not “seen and acted upon in a timely manner”.
Harris had a scan in November 2020 at Queen’s hospital in Romford, east London, but despite it showing suspected cancer the results were not properly escalated and outpatient appointments were cancelled. He was subsequently given a terminal diagnosis and died in June 2022.
Hewitt said it was not possible to say whether the death could have been prevented but there was possibly a “lost opportunity” to diagnose and treat the lung cancer. Barking, Havering and Redbridge university hospitals NHS trust said it was sorry Peter Harris did not receive “the high level of care he was entitled to” and had improved its service to “reduce the risk of this happening again”.
In Wales, an inquest last April heard how Maria Shafighian, 59, from Caerphilly, died in November 2020 after an urgent referral was left in a mail pigeonhole for a month. The Aneurin Bevan university health board, which was responsible for her care, is moving to electronic referrals. The board said on Friday its thoughts were with her family, and it took corrective actions after an investigation.
Graham Woolnough, 74, from Ramsgate, Kent, said he first contacted his GP in August 2020 after feeling unwell, and a test showed a raised prostate specific antigen (PSA) reading, which can be a sign of prostate cancer. He was given antibiotics but was not referred. He again consulted his GP last September about feeling unwell and was diagnosed two months later with prostate cancer.
Woolnough said he considered he would have had a better outcome if he had been referred after the first appointment. He said: “My cancer would not have advanced as far as it has, with the result that treatment now prescribed is more invasive and life-changing than it needed to have been.” He has since paid for private healthcare for some of his treatment.
Families who have contacted the Observer said it could be several months before scans were arranged for patients with possible cancer. Rebekah Fox, 69, from Liverpool, who had previously recovered from womb cancer, was referred by her GP to a private hospital, Spire Liverpool, commissioned by the NHS for services.
Her sons, Richard, 39, and Andrew, 40, say she was diagnosed with haemorrhoids and given paracetamol. They say she was in intense pain and “living from paracetamol to paracetamol tablet”. Fox was due to have an MRI scan in April, nearly a year after she fell ill, but called an ambulance two days before the procedure because of pain and bleeding, and was admitted to the Whiston hospital in Merseyside.
She was quickly diagnosed with cancer, which her sons said had invaded organs and was causing severe anaemia. Doctors gave her two units of blood but said the cancer was “too big and complex” to operate. She died on 20 June and her funeral was earlier this month.
Richard said: “We feel completely let down during the diagnosis stage of her illness. She was a passionate defender of the NHS but when she needed it, it failed her.” Spire Healthcare said it offered its “sincere condolences” to the family, but declined to comment on the case, citing patient confidentiality.
NHS data shows a record 2.9 million people were referred for cancer checks in April 2022 to March 2023. Healthwatch England says the increase in referrals is welcome, but some patients are not being diagnosed or treated quickly enough.
NHS England says its National Cancer Patient Experience Survey 2022, surveying more than 61,000 patients, found the average rating of care was 8.9 out of a possible 10.
Eighty seven per cent of patients said the administration of their care was good or very good. Less than half (44.6%) said the GP practice was involved in their care during treatment and that they felt they got the right amount of support from practice staff.
NHS England says it is dealing with more than double the number of referrals for cancer checks compared with a decade ago, and the additional demand means some patients are waiting longer than it wants. It says that since 2021 the NHS has rolled out 108 community diagnostic centres to help cut waiting times and ensure cancer is detected early.
An NHS spokesperson said: “These figures from Healthwatch are based on a very small sample and aren’t representative of the enormous numbers of people being referred by GPs for urgent cancer checks every month – with almost a quarter of a million people referred in May alone.
“As well as investing billions in extra treatment and diagnostic capacity, the NHS has given GP teams direct access to potentially lifesaving tests for patients without a hospital appointment first, and hospitals have been asked to work towards a 10-day turnaround time for test results to ensure patients receive a diagnosis or the all-clear sooner.”
