The report, entitled ‘Diagnosing bowel cancer early: right test, right time’, highlights serious problems with endoscopy services in the UK, with referral criteria, waiting times and quality of services being the key issues.
A colonoscopy or flexible sigmoidoscopy are the key diagnostic tests for bowel cancer. This new research from Bowel Cancer UK highlights delays in referral for diagnostic testing caused by overly-prescriptive guidelines; a lack of investment in endoscopy capacity by Clinical Commissioning Groups (CCGs) which will fail to meet future demand and inconsistencies in the type of diagnostic test and quality of test available to patients in different parts of the UK.
The current national guidelines for GPs on referral of urgent suspected cancer are restricted to those with ‘alarm’ or ‘high risk’ symptoms, such as rectal bleeding. Yet only half of people diagnosed with bowel cancer present with the ‘high risk’ symptoms that would qualify for an urgent referral.
From the 708 responses from a national survey conducted in September 2013 among people with bowel cancer who had had an endoscopy, the Bowel Cancer UK report found that one in three people who had had an endoscopy had seen their GP more than three times before their referral. Of these, nearly half had a tumour detected.
GPs can recommend patients have these tests with either a non-urgent or urgent referral. While the demand for endoscopies such as these is increasing, due to an ageing population and roll-out of screening programmes, the report forecasts a potential crisis as even more endoscopies are increasingly vital.
Deborah Alsina, Chief Executive of Bowel Cancer UK, said, “We are calling for GP guidelines to be liberalised so that GPs can use their judgement and refer patients even when their symptoms do not point directly to bowel cancer. It’s a tragedy that more people are not referred for endoscopy sooner. After all, early diagnosis saves lives.”
Waiting times for endoscopies are also a major focus of concern. People across the UK are waiting significant lengths of time between being referred and having their test.
· Waiting times in Wales are particularly poor with 15 per cent of patients waiting between eight and 14 weeks and 26 per cent waiting over 14 weeks for a colonoscopy.
· In Northern Ireland, none of the Trusts has met the target of no patient waiting more than nine weeks.
· In Scotland, performance has dropped, with 6.8 per cent waiting longer than the recommended six week waiting time target, compared to less than 2 per cent in the previous month.
· Figures for England are more encouraging - less than two per cent are waiting more than the recommended waiting time.
The picture for patients who require screening and surveillance is equally alarming.
· 60 per cent of units in Wales were judged inadequate for surveillance waiting times
· No units in Scotland received the top level (level A) for timeliness and only 29 per cent of units in Northern Ireland, the majority of units requiring improvement
· In England 20 per cent of units need to make improvements.
Deborah Alsina commented, “Waiting times for some patients in parts of the UK, such as Wales, are bordering on scandalous. We can’t increase waiting times as many people are already waiting too long, so CCGs need to commission more endoscopy capacity and endoscopy units need to ensure they are as efficient as possible so they can perform more endoscopies. As we do more endoscopies, it is also vital that quality of service is not compromised in any way, to ensure that people have the right test first time and the test is of the highest quality.”
Of those questioned in the survey, over two thirds (68 per cent) of people were referred for a colonoscopy procedure, one fifth (23 per cent) for a flexible sigmoidoscopy and five per cent of people were referred for a barium enema test. One in three of those respondents who had a barium enema had to return for another test.
“Barium enema must be ruled out as a diagnostic test for bowel cancer altogether”, said Deborah Alsina. “It is an inferior test which is still used by some clinicians to detect polyps and tumours, but it has a much higher rate of missed cancer than other tests. It cannot be right that some Trusts have ruled out the use of barium enema altogether, yet it continues to be used in other areas. Patients need confidence that they will not be referred for an inferior test simply because of where they live.”
Gail, 53, from Stevenage, was diagnosed with terminal bowel cancer two years ago. “Looking back, it was the delay in diagnosis which went on for eight or nine months, which I found so frustrating. I kept saying to my GP, ‘Stop sending me for a pelvic ultrasound’, but he was convinced it was hormonal. I had four pelvic scans and they found nothing.”
“Then my GP finally sent me to see a specialist who referred me for a colonoscopy which I had two weeks later. I knew as soon as the colonoscopy started that they could see a tumour in my bowel. Now my cancer is so advanced I am incurable.”
Bowel Cancer UK is calling for a series of recommendations to be implemented to improve endoscopy services:
1. The urgent referral pathway for suspected bowel cancer should be liberalised so that GPs can refer a patient at lower levels of risk than currently apply with the NICE CG27 referral criteria. This would enable patients with persistent ‘low risk’ symptoms to be assessed more quickly.
2. Greater investment in endoscopy services to ensure future demand for services is adequately met to avoid patients waiting for a crucial diagnostic test.
3. Joint Advisory Group (JAG) accreditation must be made mandatory for all endoscopy units across the UK.