Primary Care newsletter

March 2010 – Cancer: Early Diagnosis

Update from Macmillan GP Advisers

Welcome to the March edition of Macmillan Cancer Support's newsletter for GPs to update you on activities in primary care. This edition we will be focussing primarily on the early diagnosis of cancer.

Macmillan produces this newsletter for the benefit of Macmillan GPs, Primary Care Cancer Leads, and our wider GP and primary care colleagues to keep you informed of developments within Macmillan Cancer Support that may interest you. Further information can be obtained from your local Macmillan GP Adviser (details below) or by responding to this email address:

In this edition:



It is often stated that the UK has a poor record in cancer outcomes compared with other European countries. Quite why this should be so is difficult to say. In recent years the focus for this poor performance has increasingly been on diagnosis, rather than on treatment. Some impressive calculations have suggested 10,000 to 12,000 British lives are lost each year from late diagnosis. These have even been broken down by cancer site, with nearly 1,000 extra lung cancer deaths when compared with the average EU country (it much worse when you compare with the best). These figures, plus a lot of excellent papers covering the whole subject of the UK's cancer record are in a free online supplement of the British Journal of Cancer.

What does this mean to GPs? Firstly, it is not yet known which parts of the cancer diagnostic journey in the UK are the problem ones. Are the problems before the GP is involved (in which case the solutions are primarily those of public awareness of symptoms, plus a little on access to primary care)? Or are the delays in we GPs being slow in considering cancer as a possibility? Or is out our unwillingness to test when the chance of finding a cancer is low? Or are tests simply too hard to get hold of? Or are the problems in secondary care, even though the two-week clinics have created an apparently simple route for investigation? The truth is we don’t know which of these matter, or whether they all do. For my money, I’d say all were possible causes for some cancers, but that probably patient awareness of cancer symptoms and unwillingness to test/unavailability of tests are the main explanations.

We have made considerable progress in estimating the risk of cancer for specific presentations to primary care (which I review in the supplement above) but are still jostling around the much more tricky concept – just what level of cancer risk warrants urgent investigation? We hope to get closer to an answer for this from a recently started programme of research, the DISCOVERY programme. This will poll general practice patients by giving them various scenarios, equating to different risks of cancer and simply asking them if they would want investigation. That sounds facile: it’s not – my wife says she’d refuse a colonoscopy if she were told the risk of an underlying colorectal cancer was (only) 2%. Others would ask for investigation at any level of risk. This decision is central to how we provide cancer diagnostic services in the UK – particularly with the forthcoming expansion of such testing. Most GPs and their patients will welcome increased provision of testing but we must be careful in not overdoing it. Take one example: something like 4% of MRI brain scans in ‘healthy’ people are abnormal, showing a haemangioma similar. These generally lead to repeat scanning – which is hardly reassuring – for anyone. So, we will need to assemble guidance for testing, even if the absolute threshold for investigation falls.

All pieces written by researchers end up with the line, ‘More research is needed’ – this piece is no exception!

Willie Hamilton, MD, FRCP, FRCGP consultant senior lecturer University of Bristol

NAEDI Primary Care Audit - Anglia Cancer Network

The Cancer Reform Strategy in 2007 identified the need to look at barriers to early diagnosis, and late presentation. In response to this a primary care audit was developed which was based in the Scottish Directly Enhanced Service. The audit was designed to look retrospectively at a number of aspects of the diagnostic pathway including:

  • Time from patients first noting a symptom to when they inform primary care
  • Time between a patient first informing primary care of a symptom and being referred to secondary care
  • Time taken from referral to secondary care to being seen by a specialist.

The Anglia Cancer Network conducted this audit from July 2009. It was decided to retrospectively audit patients with a new cancer diagnosis (excluding non-melanoma skin cancers and screening detected cancers) made between April 2008 and April 2009.

124 surgeries were recruited with population of over 1,000,000 people (40% of the population of the network)!

75% of the returns have been quality assured and analysed and already there are significant trends emerging.

  1. Just under two thirds of cancers were diagnosed on a two week wait referral.
  2. As well as the 'big four' - Breast/Lung/Colorectal/Prostate, there was also a noticeably higher incidence of melanoma than expected (1.1-1.4x greater incidence in the Anglia Cancer Network compared with an age matched population).
  3. Most patients reported their symptoms promptly to primary care however a sizable minority (23%) waited more than 43 days before presenting.
  4. More than 70% of patients, who were later found to have cancer, were referred within two weeks of informing primary care of their symptoms, however 14% were referred more than 43 days after first reporting symptoms.
  5. Unsurprisingly only a very small percentage of those referred under the two week wait had not seen a specialist within two weeks.
  6. Around 85% of GPs didn’t feel that rapid access to diagnostics would have affected the speed with which a diagnosis was made in a particular patient.
  7. Of the 4% that felt rapid access to diagnostics would have helped, most wanted more rapid access to CT, MRI and Endoscopy.
  8. Around 55% of cancer was contained within the organ at diagnosis with around 35% having either spread locally or more generally at diagnosis.
  9. Where delays occurred in diagnosis these were spread reasonably evenly between patients, primary and secondary care.

Overall feedback from this audit has been very positive with the only real complaints being around the inclusion and exclusion of certain types of cancers and the omission of 'urgent' as a referral option. Further work is being undertaken to look at how best to use the information gathered within the network.

Dr David Plume-Macmillan GP Adviser LASER


Top tips for safety netting

Many of you reading this newsletter will be involved in primary care audit. On the basis of returns so far there are some common themes and lessons to be learnt. Below is a first attempt to summarise some of these into tips that may help all of us involved in primary care. These will be updated as the project progresses. We would be grateful for any comments and suggestions you may have.

  • If you feel a patient needs to be reviewed offer to make an appointment for them, rather than asking them to do it.
  • Telephone review can free up appointments. Identify patients you are concerned about and find a reliable system that prompts you to phone them – they will appreciate it and you can arrange a face-to-face review if necessary
  • The plan which is clear in your mind is unlikely to be retained clearly in the patient's mind - written instructions may make all the difference.
  • If you feel the need to check on what is happening with a patient, how do you remember? We all need a system that is effective, whether it is on paper or electronic. Our memories are likely to let us down.
  • We are responsible for making sure results are received, checked and actions required are taken. Review your systems, involving all the 'players'.
  • If you receive notification that a patient has not attended an outpatient appointment review the reason for the referral or review.
  • Having the correct contact details for patients is vital. Always check you have correct details including mobile numbers when ordering investigations or referring. Think with your staff about practice systems for maintaining accurate details.
  • When we are away from our practices, how are our vulnerable patients not disadvantaged? Consider systems to support patients - a plan shared with the patient and a colleague will both allow the patient to feel secure / supported and improve continuity of care.
  • Your intuition is a valuable tool – recognise if things don’t feel right, if objective measures (e.g. weight or Hb) are changing, or you remain unsettled by negative investigations. Think about how to proceed.
  • Don't be afraid of a referral that turns out to be unnecessary - that judgement can often only be made with hindsight and after investigation.
  • Good notes and a differential diagnosis list will help a colleague reviewing the patient to know what you were considering and guide their assessment.
  • Your body language will have an impact on the consultation. Think about how you use it to help patients have an appropriate level of concern. We want our patients to be neither too alarmed nor too reassured!
  • Evaluate how you deal with patients regularly – on your own or with a ‘buddy’. Do you have the right balance between encouraging patients to become ‘partners’ in their health - taking responsibility - and bringing patients back routinely for review?
  • Think, as a practice, about how we can all learn when things happen unexpectedly. We need to learn from these cases about how we may deal with similar patients in the future.
  • Frequent consulters and ‘heart-sinks’ can get cancer too.

Ten 'think!' triggers for early referral in suspected cancer

GPs are sometimes criticised about their referral behaviour, particularly when a diagnosis of cancer is involved. It can be a difficult task to achieve the fine balance between causing unnecessary anxiety in our patients, overwhelming the system with unnecessary referrals for investigations or specialist opinion and ensuring that, amongst the array of presentations we see, the worrying symptoms and signs are recognised and acted upon. Here are some questions to ask yourself about how you manage this and what you might be able to do to achieve that balance – these are not meant to be critical, but just some simple points to help reflection.

  1. When did you last refresh your knowledge of the referral guidelines for suspected cancer?
  2. Remember that clinical suspicion is paramount and can sometimes override what the guidelines indicate.
  3. Common things are common and most presentations are fairly predictable. But unusual presentations do happen – what was the last one you had to refer?
  4. Do you/does your practice undertake significant event analyses for patients in whom there has been a delay in referral/diagnosis? Remember a significant event analysis can be used for your appraisal and for QoF. Some areas have used Enhanced Services to critically examine the pathway, identifying delays in presentation and the symptoms with which there is more difficulty in decision-making around referral.
  5. Do you analyse your urgent/2-week-rule referral rate and what the outcomes have been for patients referred through this route? If you do, does it affect your referral behaviour? How do you compare with other practices in your area?
  6. Have you stopped to think what it is that sometimes makes you reluctant to refer? How can you get round that?
  7. Are you aware of all the ‘at risk’ groups? Everyone knows that smokers are at increased risk of lung cancer but are you aware of the increased risk of malignancy that accompanies some medical conditions?*
  8. Do you/does your practice do anything to encourage those in ‘at risk’ groups to recognise what could be a serious symptom and to come along at an early stage to discuss i.e. patient information leaflets?
  9. If you have a niggling concern about a patient but don’t feel you need to refer, do you get advice from your colleagues in the practice? Do you use your local consultants for advice (e.g. a phone call or email) about whether to refer?
  10. If ‘open access’ or ‘direct to test’ investigations are available in your area, how often to you make use of them? Do you follow up on patients who have ‘normal’ or ‘negative’ tests?

* Be aware that smoking puts people at risk of types of cancer in addition to lung; obesity, excessive alcohol consumption and sun exposure increases risk of cancer. Know the environmental carcinogens to which people may be exposed and that some infections increase the risk of cancer (e.g. HPV, Hepatitis B and C, Epstein Barr virus, herpes simplex, chronic syphilis, Helicobacter and schistosomiasis)
The medical conditions that are associated with cancer include cirrhosis, ataxia-telangectasia syndrome, multiple endocrine neoplasia, Barrett’s oesophagus, ulcerative colitis, familial polyposis coli, chronic iron deficiency states, multinodular goitre, chronic bladder irritation (e.g. stones), Kleinfelter’s syndrome, neurofibromatosis, tuberous sclerosis and Down’s Syndrome.

*Please note this list is not exhaustive.

Macmillan - Boots partnership

We are very excited to tell you about our new partnership with Boots. Much more than just a fundraising partnership, we will be working together to reach everyone in the UK affected by cancer and provide them with the information and support they need. There is much more information to come, but in the meantime if you have any questions, contact Steven Wibberley on 020 7840 4942 or


Macmillan Primary Care Conference - 10th & 11th June 2010

The venue for this year’s conference has been confirmed. The event will be held at:

Thistle Barbican Hotel
Central Street

Website which includes link to map:

We are currently finalising the programme of events for the conference. Registration for the event will open in early April and will be in contact shortly to advise on how to register.

Other useful links

Learn Zone

Learn Zone gives you free and easy access to a wide variety of online resources, e-learning programmes, professional development tools and information about Macmillan's latest learning and development opportunities. Learn Zone is open to Macmillan professionals, other healthcare professionals and members of the public. We hope you've enjoyed reading this update from Macmillan GP Advisers. Please feel free to send us your comments by responding to

Best wishes

Dr Steven Beaven
Dr Kevin Bolster
Dr Terry Bowley
Dr Cathy Burton
Dr Charles Campion-Smith
Dr Duncan Leith
Dr David Linden
Dr Rosie Loftus (lead GP Adviser)
Dr David Plume
Dr Rhys Davies
Dr Kavi Sharma
Dr Lucy Thompson
Dr Hong Tseung
Dr Matthias Hohmann
Dr Bridget Gwynne

Want to know more about who we are and what we do? Visit today and see our latest awareness campaign to help us reach and support even more people affected by cancer.

Did you know?
Around 4-5 new patients per 1,000 on your list will be diagnosed with cancer each year (the younger the age profile of your practice, the lower this figure is likely to be).

Around 25 patients per 1,000 on your list are living with cancer – do you know who they are?

  • 3-4 were diagnosed last year
  • 8-9 were diagnosed 1-5 years’ ago
  • 6-7 were diagnosed 5-10 years’ ago
  • 6-7 were diagnosed 10-20 years’ age



If you would like to leave feedback about this newsletter or the work Macmillan do, please do so.
Our cancer support specialists are available on 0808 808 00 00, Monday to Friday, 9am-8pm.

Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.