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Cancer chiefs override NICE guidance over fears of missed GP diagnoses

Exclusive Cancer experts in charge of referral pathways in London have not implemented key updates to NICE guidelines over fears they could lead to GPs missing cases of head and neck, sarcoma and colon cancers, Pulse has learned.

The experts said they have reinstated advice from previous guidelines on referral for suspected pharyngeal cancers, after the updated NICE guidelines completely omitted them – despite these cancers making up a fifth of cases of head and neck cancers.

They also completely overruled advice for people with vague symptoms of bowel cancer and persistent symptoms of sarcoma over concerns that GPs could be falsely reassured.

But NICE advisors said the deviations were not based on current evidence and that the updated guidelines allow GPs to refer patients urgently if they have significant concerns that do not fit with their specific recommendations.

The recently updated NICE guidelines on suspected cancer (NG12) advise referral for potential laryngeal cancer – not pharyngeal – on the basis of the common symptoms persistent hoarseness and unexplained neck lump.

However, the Pan London Cancer Commissioning Board – supported by the London Transforming Cancer Services Team (TCST) and with input from experts including CCG cancer leads, Macmillan GPs and tumour pathway directors from London Cancer and London Cancer Alliance – said GPs should still refer if a patient has symptoms such as persistent pain or discomfort in the throat, pain or difficulty swallowing or ear pain, in line with the previous 2005 NICE guidelines (CG27).

The Board has also lowered the age threshold for referral from 45 to 40, to reflect the lower age of presentation for pharyngeal cancer.

In another key divergence from the guidelines, the team also overruled a new recommendation that GPs should order the faecal occult blood test (FOBT) for patients with vague symptoms of bowel cancer. Instead they advised this group should continue to be referred for investigation of potential lower gastrointestinal cancer, as has been recommended under previous local referral criteria.

However, this recommendation could be revised once pilots of the newer, potentially more accurate faecal immunohistochemical test (FIT) have been fully evaluated.

London has also deviated from the NICE guidelines by stressing that GPs should refer patients for investigation of bone or soft tissue sarcoma even if  X-ray or ultrasound results are normal if they have an ongoing suspicion.

Dr Ishani Patel, GP clinical lead at the TCST in London, told Pulse that the team felt ‘the NICE guidelines have been good overall, but there were some serious concerns with head and neck, colorectal and sarcoma’.

Dr Patel explained that, in particular, NICE had 'omitted pharyngeal cancers that account for 23% of all head and neck cancers, as well as sinus/nose and ear, and therefore symptom criteria were retained from the 2005 NICE guidelines’.

She added that the changes were made based on a ‘robust evidence review taking into consideration of CG27 and NG12 and other tumour specific guidelines’.

Professor Willie Hamilton, professor of primary care diagnostics at the University of Exeter, who helped to develop the 2015 NICE guidelines update, said there was ‘simply no primary care evidence’ to support the additional referral advice on pharyngeal or other head and neck cancers included by the London team.

Professor Hamilton said: ‘Several of the London things seem to be trying to give more info to help the GP to know when to trust their own judgement. Of course, the additional info isn’t evidence based or we would have used it, and there is a tension between giving GPs yet more info, against trusting them to use their clinical nous.’

He added that the decision not to offer FOBT, or the newer FIT, was ‘strange’ and that ‘replacing them with colonoscopy is not cost-effective… and puts additional strain on the colonoscopy service, which is already creaking’.

Dr Patel stressed, however, that TCST want to use the newer FIT once it is evaluated. She also highlighted that the decisions were specifically based on London data.

This story was updated on 27 July to clarify that the decisions were authorised by the Pan London Commissioning Board following a collective process supported by London CCGs.

What is NICE's new cancer referral guidance?

Last year's revamped NICE guidance on suspected cancer aimed to get GPs to refer patients more readily for urgent investigations of potential cancer, as part of the national NHS drive to detect cancers earlier and improve survival rates.

The updated guidelines lowered the risk threshold for referral - from a positive predictive value for cancer of around 5% to 3% - as well as recommending that GPs should be able to order more tests directly, such as endoscopy or ultrasound, in certain circumstances, to avoid patients having to wait for an outpatient appointment first.

While the emphasis on giving GPs more licence to refer when they feel necessary, GP critics warned the balance may have been tipped towards overinvestigation, while on the other hand experts warned that certain changes might lead to some cancers being such as bowel and bladder cancers.

It also emerged that GPs were in reality facing barriers to get urgent cancer referrals accepted, with referrals being bounced by secondary care and some CCGs even offering incentives to stop GPs from referring down the two-week wait pathway too much

Related images

  • hospital outpatient referrals  PPL


Readers' comments (4)

  • Vinci Ho

    (1) Specialists need to make up their mind and stop sending confusing messages to GPs
    (2) We have already discussed FIT test on this platform a few times,pros and cons. Overall ,FIT(not standard FOB) is a good and non-invasive ,additional tool for GPs
    (3) GPs are responsible for following tests they initiated. Falsely reassured or not, it is still our responsibility to ensure that is not the case if we instiagted the test . Parenting from our secondary colleagues seem unnecessary. Obviously ,one should not request something which one does not have full understanding in the first place.
    CXR can only detect 75-80% lung tumour ,that does not mean we request low dose CT all the time;my argument.

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  • I am concerned that we are tumbling towards the way in which medical innovation was treated in the Middle Ages.
    I do not ever want to see this type of comment in the public domain until we have a consensus of opinion to which everyone can adhere to unless there is something obvious that needs to be rectified.

    I would throw into question whether one or both groups are fit to practice irrespective of their medical standing.

    It took my partners great difficulty in preventing from taking out the didactic bastards who failed to investigate a young female patient with cancer, given that the guidance determined that she was too young to have the problem she eventually died of.

    Get your ivory towers in order at all levels for cancer diagnosis and treatment. I managed the first practice in the country to carry out 3 yearly cervical smears which caused no end of problems with the accountants who paid for one every 5 years. (Cynically I felt that it should be sooner) and you still haven't got it right.

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  • Could someone let the public know we have to use FOBT to figure out if they have bowel cancer as the colonoscopy service is 'creaking under pressure'. As FOBT primarily have their evidence as a screening and not diagnostic tool the public should be made aware this is what they're getting due to budget cuts. Some cancers will be missed. We were supposed to be doing more 'cancer tests' as suggested by Lord Hunt.

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  • Hello friends,
    In this confusion, the humble GP has been forgotten. After 12 years of training we still need further training by NICE and LSTC and STCP. Why not send all 30,000 GPs on a sabbatical for a month to refresh themselves?
    Retired GP 6 years.

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