A  Patient Engagement Report afrom 2017 suggests that approximately half of patients were not informed of the reason for their urgent referral by their GP. Nearly 40% of patients in the survey said that their GP did not tell them that their referral was to exclude cancer. Approximately 35% said that their GP did not give them all the information that they needed before their first hospital appointment. Cancer Research UK emphasises the importance of:

• Informing the patient that they are being referred to rule out cancer and reassure that most people referred will not have cancer
• Ensuring the patient understands the importance of attending their referral appointment
• Providing written information to the patient

The videos below guide you through the importance of preparing patients for referral and how to do this.

What to tell a patient at the point of referral

In this video, three specialists give their opinion on what they think you should share with a patient at the point of referral.

Good preparation of a patient

The following film shows how different Simon felt about receiving a cancer diagnosis when his GP was open and clear with him about the nature of his referral.

The consequence of poor preparation of a patient

This video shows how Simon, a patient in the GatewayC Colorectal Cancer Early Diagnosis course, felt about receiving his diagnosis of cancer without having been fully prepared about the nature of the referral by his GP.

Telling an unsuspecting patient

Telling someone unsuspecting that they need a referral is a form of breaking bad news. When giving this information, it is important that the patient dictates the pace at which information is shared, and that the GP is gentle but honest. This honesty will help maintain health practitioner – patient trust and potentially minimise the number of DNAs (did not attend). One can equate the breaking of bad news to the analogy of a leading a patient down a staircase, one step at a time. It is also essential for the health practitioner to be open with the patient about any uncertainty regarding their condition and to hold this uncertainty for their patient. The dropdown boxes below outline an approach to delivering significant information. Firstly, fully assess the patient’s perception of what is wrong:
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If the patient is not aware of what is wrong

1. Give a warning shot, ‘I’m concerned this could be serious.’
2. Deliver information in small amounts allowing each bit of information to sink in before checking if it’s ok to continue
3. Pause
4. Empathise, elicit feelings, “How do you feel about what I’ve told you?”, and allow space for response
5. Elicit concerns and give information and advice in response to concerns

If the patient is aware of what is wrong

1. Deliver a warning shot
2. Pause
3. Confirm their understanding
4. Empathise, elicit feelings, “How do you feel about what I’ve told you?”, and allow space for response
5. Elicit concerns and give information and advice in response to concerns

To see an example of how to tell an unsuspecting patient that they need a referral, watch the video of Dr Lord placing Sophie, a young patient from our Lymphoma course, on a suspected cancer referral.

What a patient wants to know

The following three patients share their perspective on earlier diagnosis with Dr Sarah Taylor GP. They discuss what a patient wants to know when being referred, the amount of information a patient might want to receive at this point and the importance of honesty and safety netting with patients.

• Saeed Shakibai, patient representative, diagnosed with stage 2 colorectal cancer in 2009
• Lauren Mahon, founder of GIRLvsCANCER and co-host of You, Me and the Big C, diagnosed with breast cancer in 2016
• Deborah James, former deputy headteacher, author and also co-host of You, Me and the Big C, diagnosed with colorectal cancer in 2016

Cancer registration

When a person is diagnosed with cancer in the UK, information about them is automatically included in the national cancer registry. It is important that clinicians inform patients about the cancer registry and their right to opt out. Further details about the cancer registry can be found here.

Additional resources

• Link: Influence of doctor-patient conversations on behaviours of patients presenting to primary care with new or persistent symptoms: a video observation study, BMJ Quality & Safety 2019, Vol 29:3 (2020)
  Link: Exploring public attitudes towards the new Faster Diagnosis Standard for cancer: a focus group study with the UK public, British Journal of General Practice (2019)
  Link: Suspected cancer: recognition and referral, NICE (2021)
  Link: Patient Engagement Report 28 Day Faster Diagnosis Standard, The Ipswich Hospital (2017)
  Link: Listen to Lauren and Deborah’s You Me and the Big C podcast here
  Link: Lauren’s online cancer community GIRLvsCANCER
  Link: Deborah James’ book, F*** You Cancer

  Reference: Assessing Patients with Cancer: The Content, Skills And Process of Assessment, C.M. Heaven and P. Maguire (1993)