Reviewing your Cervical Screening History

Information for patients diagnosed with cervical cancer

Being told you have cervical cancer can be a shock. You may feel anxious and uncertain about what will happen next. You may also be wondering why you have cervical cancer, especially if you have had screening tests (often called smear tests) in the past.

Cervical screening and cancer cervical screening reduces the risk of developing cervical cancer. It can prevent about 75% of cervical cancers from developing (3 out of 4). Regular screening is the best way to find changes to the cervix early on. But, like other screening tests, it is not perfect. Screening cannot identify every single case of cancer or pre-cancer.

What is the National Cervical Cancer review?

We review the cervical screening history of everyone diagnosed with cervical cancer to see that any cervical screening tests and investigations have been carried out in line with NHS Cervical Screening Programme standards.

Reviews are an essential part of every high-quality screening programme and are a routine part of the cervical screening process. Information we gather from individual cases helps to improve the programme and learn more about how cancers develop and how they are diagnosed.

Whilst regular cervical screening is the best way to reduce the risk of developing cervical cancer by detecting abnormal cells on the cervix early on, like all screening tests it is not perfect. Abnormal cells can be missed, even in the best performing screening programmes which meet all the quality standards.

All information collected from the review is confidential and will be shared with the National Cervical Screening Programme on an anonymous basis. This means your name and address will not be included.

What does the review involve?

We review all records connected to your cervical screening history from the past 10 years.

This includes your invitation letters, cervical screening tests, result letters and any medical investigations related to cervical screening.

A group of professionals will look again at your previous tests and your medical notes related to cervical screening.

Cervical screening has recently changed to Human Papillomavirus (HPV) primary screening.

All screening samples that are HPV positive (contain HPV) are put onto a slide to be checked under a microscope for abnormal cells (cytology). These cytology slides will be reviewed. We are not able to review samples that are only HPV tested (not put onto a slide), as they are not kept.

What will the review show?

In most cases, a review will show that the correct procedures have been followed, and appropriate care was received.

Occasionally, a review may find that one or more steps in the process have not worked as well as they should.

This can highlight where we could make improvements to the screening programme and also to patient care within our service.

Can I see my results?

A review may take up to six months to complete. We will let you know once the findings are available at which point you can decide whether you wish to know the findings of the review.

If you wish to receive the review findings, you will be offered an appointment with your consultant to discuss the review results and ask any questions you may have.

If there is anything you do not understand about this review or if you would simply like to discuss it in more detail, please let us know using the contact details at the end of this leaflet and we can arrange an appointment.

What if I do not want to know the results of the review?

It is up to you to decide whether or not you want to know the results of the review. It will not make any difference to your care.

If you decide you do want to know the results in the future, please contact our department, and we will discuss the review with you.

Can my family ask for the results if I do not want to know?

Unless you give permission, we cannot give your relatives access to any details of your medical records.

Could my cancer have been found earlier?

Screening history reviews usually find that a cervical cancer has been found at the earliest possible stage.

Although cervical screening prevents most cervical cancers (about 7 out of 10), it cannot prevent all of them.

The review process aims to highlight any areas which could be improved in the future. Some examples of issues that can be found are described next.

Identifying abnormal cells

Screening cannot always identify abnormal cells on a cytology slide because:

• Sometimes abnormal cells do not look much different from normal cells.

• There may be very few abnormal cells on the slide.

• The person ‘reading’ the slide may not identify the abnormal cells (this happens occasionally, no matter how experienced the reader is).

Colposcopy

Colposcopy (a visual examination of the cervix) cannot always identify abnormal areas of the cervix because:

• The abnormal area might not be visible during the examination.

• The abnormal area might not be sampled in a biopsy (a small tissue sample).

• The abnormal cells might be hidden higher up inside the cervix.

• Some types of abnormality are very difficult to identify at a colposcopy.

Further Advice

We hope that you have found the information in this leaflet helpful. If you require any further advice regarding your care, please do not hesitate to contact us directly. We are here to support you and are happy to help with any concerns or anxieties you may have.

Contact numbers:

You can contact a Specialist Nurse Colposcopist on the following number:
Colposcopy Hub:
Monday to Friday, 8.30am to 4.30pm
Telephone 01429 522268

References:

Public Health England (2024) NHS Cervical Screening: Programme and Colposcopy Management,  https://www.gov.uk/government/publications/cervical-screening-programme-and-colposcopy-management

Lellé, R.J., Küppers, V., (2023) Colposcopy: Comprehensive Textbook and Atlas

Useful Websites:

Cancer Research UK:
www.cancerhelp.org.uk
www.cancerscreening.nhs.uk

Jo’s Cervical Cancer Trust:
www.jotrust.co.uk

The British Society for Colposcopy and Cervical Pathology:
www.bsccp.org.uk

Comments, concerns, compliments or complaints

Patient Experience Team (PET)

We are continually trying to improve the services we provide. We want to know what we’re doing well or if there’s anything which we can improve, that’s why the Patient Experience Team (PET) is here to help. Our Team is here to try to resolve your concerns. The office is based at the University Hospital of North Tees if you wish to discuss concerns in person. Our contact details are:

Telephone: 01642 624719
Freephone: 0800 092 0084
Opening hours: Monday to Friday, 9:30am to 4:00pm
Email: [email protected]

Out of hours

Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person.
Telephone: 01642 617617

Patient, Public and People with Lived Experience

We are looking for patients to share their experiences of healthcare and to join our Involvement Bank. Working with the patients, carers, families and the general population we support in making decisions about their care can lead to better health outcomes, increased patient satisfaction and a better overall experience. We want to listen and work with you in shaping the future of your healthcare services. To find out more about the Involvement Bank go to our website or contact us at:

Website: www.nth.nhs.uk/about/community/people-with-lived-experience
Email: [email protected]

Data protection and use of patient information

The Trust has developed Data Protection policies in accordance with Data Protection Legislation (UK General Data Protection Regulations and Data Protection Act 2018) and the Freedom of Information Act 2000. All of our staff respect these policies and confidentiality is adhered to at all times. If you require further information on how we process your information please see our Privacy Notices.

Telephone: 01642 383551

Email: [email protected]

Leaflet feedback

This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Clinical Governance team at:

Email: [email protected]