The fact that John Marsh’s bowel cancer was diagnosed so early felt lucky.
“I had no symptoms,” he says.
But 9 years ago, the national bowel screening programme played its part in John’s early diagnosis.
“I feel very lucky,” he says.
But John, now a patient advisor for the National Cancer Diagnosis Audit, knows his story isn’t shared by everyone.
Delays happen for many reasons. “I feel sorry for those patients who go to their doctor several times,” says John. While multiple visits to a doctor may be necessary, time is important. Cancers diagnosed at a later stage are harder to treat “and recovery prospects are lower”, says John.
John’s call to researchers since his diagnosis is to better understand the ways patients are diagnosed “so cancers get diagnosed earlier”. And quicker.
That motivation is why we joined forces with Public Health England, NHS England and other partner organisations to run the National Cancer Diagnosis Audit (NCDA). It draws together information supplied by GP surgeries and hospital data to map out the way thousands of patients were diagnosed in England in 2014. And the first findings, published today in the British Journal of General Practice, tell us why some patients might experience a delay in their cancer diagnosis.
What did the audit find?
The audit found that more than 7 in 10 cancer patients first reported symptoms at the GP surgery, or during a GP home visit. Less than 1 in 10 first presented at A&E.
The good news is that many patients who were first seen by their GP were referred straight away, while others had necessary investigations, such as blood tests or x-rays before being referred.
On average, patients were usually sent on to a specialist within 5 days. And most patients were diagnosed without any avoidable delay, according to GPs’ responses.
But for more than 1 in 5 patients, GPs said there had been a delay somewhere along the journey to diagnosis that could have been avoided.
What’s an avoidable delay?
An avoidable delay is “something that unnecessarily slowed down or held up the patient getting diagnosed”, says Dr Ruth Swann, who led the analysis.
And the audit asked GPs if, in their opinion, this happened for any of their patients.
“If they said: ‘yes’, we asked them to tell us at what stage in the pathway the delay happened and who or what caused it,” says Swann.
Information on when and how avoidable delays happen helps to identify problems and pinpoint bottlenecks where changes could be made to improve the early diagnosis of cancer.
Why do avoidable delays happen?
With ever-growing pressures on the NHS, it’s no surprise the audit found that around 1 in 3 avoidable delays were due to factors linked to the healthcare system, such as having to wait for a test or an appointment. Similarly, more than a quarter were due to doctors (GPs or specialists), for example when symptoms were difficult to assess.
But not all delays could be attributed to the system or to doctors. Around 1 in 4 delays were down to patients, by delaying seeing their GP, for example.
The audit also found that delays could happen at various points on the journey to diagnosis.
Around 1 in 3 delays were linked to diagnostic tests, such as waiting for a test to be done or results to come back. And around 1 in 5 delays happened when the patient was being referred.
“Understanding the mechanics of how cancer is diagnosed has improved my appreciation of where I can effect change,” says Dr Ben Noble, a GP from the East Midlands. “As health professionals, we all have a part to play in reducing avoidable delays in diagnosis. Sometimes we might have managed a patient differently or recognised the need for system change at our place of work.”
But Noble says that accounting for other issues is equally important. “There are larger parts of the diagnostic journey that are out of our control and only by working as part of a co-ordinated health community can large-scale improvements be made,” he says.
Short-staffed NHS and the demand for tests
Every year more people are referred for diagnostic tests and services are struggling to keep up with growing demand. The audit shows that this can lead to unnecessary delays for patients.
The audit looked at patients diagnosed in 2014, which is before new GP referral guidelines for cancer were published. And before England’s cancer strategy was launched.
Since then, changes have been introduced and progress has been made. The next round of the National Cancer Diagnosis Audit – due in 2019 – will show if these changes have made a difference.
We also hope that recent commitments to boost staff numbers in NHS diagnostic services will help tackle growing demand.
“The data gathered in this audit is really rich and we have only just scratched the surface,” says Swann.
“Each general practice has received its own individual results so the practice team can identify areas where they could improve.” And many are already making changes.
“We are now planning to do further in-depth analyses to help build a better picture of pathways to cancer diagnosis on a UK-wide level,” says Swann.
This analysis should offer more clues about how to tackle unnecessary delays and speed up cancer diagnosis. And it’s this bringing together of data where John sees the greatest potential.
“The National Cancer Diagnosis Audit data is a core piece in this jigsaw, and I hope now that we have shown we can get actionable results, even more GP practices will take part in this audit next time,” he says.
“I was at stage 1 so an op to remove seven inches of bowel was all I needed and I recovered fully.”
With the right combinations of data, rather than luck, we can make sure everyone’s experience of cancer is a bit more like John’s.
Jana Witt is programme manager for the National Cancer Diagnosis Audit
The National Cancer Diagnosis Audit was funded by Cancer Research UK and NHS England and was run in partnership with Public Health England, the Royal College of GPs and Macmillan Cancer Support.
Swann, R., et al. (2017). Diagnosing cancer in primary care: results from the National Cancer Diagnosis Audit. BJGP. DOI: 10.3399/bjgp17X694169
Mary alexa wightman February 11, 2018
My ca n certain was not dignored for over a year becaus e it was put down to stress or possibly dementia. When I began to drag my left foot a little I was referred to to a neurologist. However that would have taken 6 months.so I paid to see him. £120 within 2 days I had a scan. Within 10 days I had an op.it was. Inoperable . Been on temozamlide for 13 months ,the docs want me to complete 12 cycles. Start one next week number 10. 11 and 22 to go.because it is so diff u se at the edges they cannot target the tumour accurateky. So all the can offer is keeping it in check and monitoring it.it will get me ib the end but we all have to go of something.I am being treated in prestonunder Dr kennedy