Evidence suggests that UK cancer patients do not have as good an outlook as cancer patients in other countries. So what can commissioners do to catch up?
The outcomes for patients with cancer in the UK have been historically poor. For many years the reasons were matters of speculation. Elimination of the variation of quality and outcomes in UK cancer services would reduce mortality by about 3,000 deaths per year.1 But this variation exists in other countries too, so why is the UK different?
Two crucial pieces of epidemiological evidence have given a clear clue. The Six Nations study2 shows outcomes improving in Britain but lagging behind other countries, with Denmark trailing us. This trend is true for other common cancers too. A clue is that the UK and Denmark have similar primary care GP services, suggesting that our healthcare system may be a contributing factor.
The second piece of evidence shows that the excess deaths in the UK occur in the first three months of diagnosis, mainly in the first month. Once patients survive their first year, deaths in the UK are exactly the same with the other countries, showing the quality of care in the UK is as good as anywhere else. This suggests we have an increased death rate due to late diagnosis, and that our system of GPs referring into hospitals may delay care and affect outcomes.
Here are some tips that may help redress the balance.
GPs and commissioners have an important role in driving up screening rates and improving local profiles. Commissioning of services is currently fragmented, so clinical commissioning groups (CCGs), Public Health England (PHE) and councils have to work together better.
Evidence shows GPs can hugely improve uptake through CCG-commissioned services to chase non-attenders, and screening hubs must be more flexible, giving CCGs and GPs prompt data access. Cervical screening can stop 75% of cancers, and bowel screening reduces mortality by 16%.
The new bowel scope one-off flexible sigmoidoscopy at age 55 reduces the lifetime risk of developing bowel cancer by 50%. London has launched a guide on how to improve screening using evidence-based recommendations.3
The latest National Institute for Health and Care Excellence (NICE) guidelines4 on the early diagnosis of cancer were published last year. There are significant differences in the referral reasons for some cancers. Overall, the threshold of suspicion causing referral has been reduced from the pre-existing guidelines at 5% to 3%. CCGs must embed the pathway changes and support GPs to manage these changes.
3. Don’t abuse the urgent suspected cancer referral system
Over 50% of all cancers are diagnosed through this route, and the NICE changes will increase the already burgeoning urgent referrals. It is important not to clog the system. Some common examples of inappropriate referral include:
- Basal cell carcinomas.
- Explained symptoms. If a patient has an explanation for their symptoms, referral is not warranted. This sounds obvious but it happens. For example, if a woman has post-menopausal bleeding with severe atrophic vaginitis, referral is not needed. Referral will delay her treatment and cause her anxiety for no benefit.
- Urinary problems without adequate investigation – examples include referring a trace of haematuria, referring dipstick haematuria without excluding a UTI, referring men with an elevated PSA without excluding a UTI.
CCGs need to work with trusts and GPs to develop a process for collecting these referrals and improving referral practice.
4. Reflective learning
GPs can learn from cancer diagnosis, and CCGs and trusts can learn from significant events and breaches. For GPs, could they have diagnosed earlier? If the patient has been diagnosed via an emergency admission (around 25%) consider carrying out a significant event audit. What was the reason? Did they miss an opportunity for screening, raising cancer awareness, clues in presentation or were there delays through standard referral routes? Other tools are practice cancer profiles, which are a useful area of debate in a practice. Engage with the primary care programmes run by MacMillan and others. In CCGs, clinical leadership should review cancer breaches and work across the commissioner-provider split.
5. E-mail referrals
From April 2016, USC referrals should not be faxed, but emailed. This reduces the risk of referrals being lost, and greatly improves data quality. Transforming Cancer Services Team (TCST) has developed a pan-London referral form embedded in common GP systems, enabling prompt email referral. This reduces variations in referral practice and improves diagnostic pathways. Trust cancer offices need to change, and CCGs have a governance oversight role.
6. Direct to test
To reduce delays and handoffs, the initial diagnostic phase of many cancers should be passed wholly or in part from the trust to the GP. This will mean more focused diagnostics in primary care, and a reduction in some USC two-week referrals. Direct-to-test upper GI endoscopy is estimated to reduce the number of upper GI USC referrals in London by 12,000 a year. Commissioners should ensure GPs have access to key diagnostic tests, notably upper GI endoscopy, non-obstetric ultrasound, flexible sigmoidoscopy, colonoscopy, brain MRI and abdominal CT. CCGs and trusts must work honestly together to resolve the capacity issues that arise from this approach.
7. Straight to test
Straight-to-test is a referral to a trust where the first contact is diagnostic, such as ultrasound for potential testicular cancer and ultrasound for uterine mass. Here the responsibility for acting on the test is with the trust. Both direct-to-test and straight-to-test can have a major impact on patient experience, releasing capacity in both primary and secondary care and providing value for money. CCGs must look at pathways to make them more effective with as few handoffs as possible.
8. Safety netting
The fast-track approaches create responsibilities. The person ordering the test is accountable for acting on the result. If that is a GP, they are responsible for chasing up the result and acting on it.
An urgent direct-to-test referral is not a USC referral, does not go through the trust’s cancer office and is not a two-week diagnostic pathway. So the GP practice needs a system of recording and reviewing direct-to-test results. If a test suggests or diagnoses cancer, the patient should go straight into the trust’s two-week system and interim steps should be kept to a minimum to reduce the chance of error and delay in the pathway. Again, GPs, the commissioners and the trust need to work together on this. Such a system should reduce the risk of the GP missing a significant result – but does not take away their responsibilities.
This is normal practice in many areas but new in some. Also key is the time to report tests, obtain histology and report back to the GP (or trust cancer system). There is no value if a test is done within two weeks, yet the final report does not arrive for six. This does mean major changes in the way a trust identifies urgent two-week diagnostic referrals, and how it prioritises them. Urgent two-week diagnostics must have a different process from routine six-week diagnostics, and CCGs must agree key performance indicators on this with the trust.
Slick diagnostics are of no value if the patient presents late. Awareness of cancer among the public is generally poor and there is no doubt this is a contributory factor to the UK’s excessive mortality. The formal commissioner for awareness is PHE. Health and wellbeing boards must work across the system to identify and target their highest-risk local populations as well as supporting Be Clear on Cancer campaigns. The evidence shows that after Be Clear on Cancer campaigns, diagnostics and diagnoses of cancer increase. However, awareness falls away afterwards. Brief interventions by all clinicians (not just GPs) can both increase awareness and reduce risky behaviours (especially smoking).
10. Openness and honesty
CCGs must embed a step in the referral pathway that the patient must be informed that their symptoms may be caused by cancer. It is no longer acceptable to refer people without making them aware that cancer is a possibility.
Although this policy may well generate anxiety, withholding these concerns to protect the patient is unacceptable. All patients being referred to a direct-to-test diagnostic or as a USC should be given clear written information on the reason. Many areas have these written by patient groups, which is ideal. Too many patients are still attending hospital to find they are suddenly in a cancer clinic and were not told that was a possibility. This creates even greater anxiety and also puts staff in an impossible position.
One of the commonest reasons for breaches of cancer targets is people not attending for appointments or tests because they do not appreciate their importance. Referring clinicians should impress the importance on the patient and ensure they will attend within the two-week window. Factors that could cause delays should be flagged with the referral – eg mental capacity problems, other significant medical conditions or drugs, disabilities and language barriers.
If you suspect a patient is concerned they may have cancer, address that openly. Remember some have especially good reason – if they have had cancer before, are elderly, have family histories or conditions such as colitis. Understanding the patient’s agenda is critical.
Cancer is not rare; it is common. It is increasing and will affect half of us through our lives. Between a third and a quarter of us will die from cancer. Whether a patient is cured or not, being diagnosed early makes a huge difference – not just to outcome figures, but also to patients, their families and friends who can feel assured everything possible was done. l
The National Cancer E-atlas. www.ncin.org.uk/eatlas
- National comparisons of lung cancer survival in England, Norway and Sweden 2001-2004: differences occur early in follow-up.
- MyHealthLondon www.myhealth.london.nhs.uk
- NICE guidelines on the early diagnosis of cancer https://www.nice.org.uk/news/feature/helping-gps-make-an-early-diagnosis-of-cancer