Supporting patients to make informed decisions

This page is aimed at primary care staff, including sample takers and reception staff. It may also be useful for other healthcare professionals.

Cervical screening is one of the best ways to prevent cervical cancer, but it is not a mandatory test. You can provide the information and support your patients need to make an informed decision about cervical screening. 

Is cervical screening a choice?

Yes. It is up to the patient to decide whether they want to attend cervical screening.

It’s important that any decision a patient makes is informed. This means that they have all of the information they need to make a decision. The information should be unbiased and factual – not swayed towards either the positive or negative.

How you can support patients to make an informed decision

Ensure patients know both benefits and risks of cervical screening

Benefits:

• Cervical screening prevents about 7 in 10 (70%) deaths from cervical cancer.
• Cervical screening can prevent the need for major and, in some cases, life-changing treatment. The test is designed to pick up HPV and cervical cell changes (abnormal cells) early, before cervical cancer develops, so they can be monitored or treated conservatively.

Risks:

• Cervical screening is uncomfortable or painful for some patients.
• No test is perfect and, in a few cases, HPV primary screening may give a false positive or negative result. This happens in less than 1 in 10 (about 5%) results. 
• False results mean there is a small chance of overtreatment for cervical cell changes or unnecessary appointments.  

Ensure the patient has access to accessible information

Patients may need information in a particular format or language in order to fully understand cervical screening and make an informed decision. You can assist them by offering:

• an interpreter – in person or over the phone
• translated information – you could use our videos or the Browse Aloud web tool
• BSL information – see an example video from Scotland >
• Easy Read information >
• large print information.

Explain what will happen during a test

If you are taking the sample, you should explain to a patient exactly what will happen during the appointment. You should be able to answer questions and respond to concerns. Even if a patient has had cervical screening for many years, it is important not to make assumptions about what they know or how they feel. 

Make it a continual choice

Some women and people with a cervix feel very anxious about screening, so it’s important for all patients to know that they are in control. They can choose to stop the test at any point before or during the appointment. 

Explaining this clearly to them can help them feel empowered and less anxious. It is good practice to continually check in and get their consent by explaining what you will do at each stage, before you do it. For example, you could say, ‘I’m going to insert the speculum now. Is that OK?’, and wait for them to confirm before you do it. 

Respect the patient’s decision 

If the patient withdraws their consent before or during the appointment, let them know they can ask to come back at any time. We have heard of some patients being refused other health services if they do not want cervical screening – this should never be the case. 

If a patient is unsure of having cervical screening at an initial appointment, you can ask them what you could do to support them in future and make sure you signpost them onto support. 

Signposting to further information and support

It is important that patients have access to information and support from other reliable sources. You could signpost them to:

• the Jo’s Cervical Cancer Trust website >
• the NHS England website >
• the NHS Inform website >
• the NHS Wales website >
• the NI Direct website >

Patients may feel more able to ask difficult questions of or disclose personal experiences to independent organisations, rather than their healthcare professionals, so you can also signpost them to the Jo’s Cervical Cancer Trust Helpline on 0808 802 8000. 

Patients who withdraw from cervical screening

Patients can choose to withdraw from the Cervical Screening Programme (CSP). It is important patients understand:

• the risks and benefits of having or not having cervical screening
• that they will no longer receive invitations for cervical screening
• that they can ask to return to the CSP if they choose.

The patient should put their decision to withdraw in writing. It is the GP surgery’s responsibility to notify the CSP. 

Useful resources

• Good practice guidance for cervical screening >
• NICE guidelines on shared decision making >
• NHS guidelines for ceasing or deferring patients from the CSP >