Personal cervical screening reviews were developed with women affected by cervical cancer, and their voices continue to guide how the review process evolves. Here we share what women told us, the improvements we have made to our review process in response to this, and how we will continue to listen and learn.
By Susie Black, Head of Client Services, National Screening Service
Background
While cervical screening is highly effective at a population level, it is known that it will not prevent every case of cervical cancer. A small number of women who have regular cervical screening will still develop cervical cancer.
In 2023, we introduced a personal cervical screening review process for women who develop cervical cancer after screening. Reviews offer women the opportunity to understand how and when their cancer developed, through a caring, person-centred process. We developed this process in partnership with women affected by cervical cancer.
Personal cervical screening reviews are available on request from women who have had a cervical cancer diagnosis and a CervicalCheck screening test in the 10 years before their diagnosis.
Improving the review process
We ask women who have a review to give us feedback to:
- find out how the review process impacted on them
- identify potential improvements to our service.
It’s part of our work to listen to women and to aim to continuously improve women’s experience of screening.
What we ask women
To understand women’s experience of the review process, we ask them to tell us about the care, communication and support they received, including if they felt that:
- they were treated with dignity and respect
- they were listened to during their introductory and results meetings
- they had opportunities to ask questions throughout the process
- their questions and concerns were addressed
- they received the information and support they needed to take part in and understand their review.
We also ask women to suggest areas for improvements. Together, these questions help us understand how women experience the process, and to identify what is working well and where improvements could be made.
Improvements made
Four areas for improvement emerged from the feedback:
- how long the review process takes
- the information and materials provided to women
- the terminology used in communications to women
- how results are categorised.
We have made the following improvements to the review process in direct response to the women’s feedback:
- We have recruited and trained more doctors to carry out review meetings with women in response to feedback that the wait time was too long to meet with a doctor as part of their review.
- We reviewed our communication materials and reduced the amount of clinical and statistical words used.
- We developed a leaflet of frequently asked questions to address feedback women gave us about there being ‘too much’ and ‘too little’ information provided in the review meetings.
- We improved the written report at the results meeting to provide more detail to women on the reports from the external reviewers.
- We improved the review process to include sharing the review results with a woman’s GP or consultant, where consent was given, to ensure she has ongoing support.
- When women raise concerns that fall outside the scope of the review process, we signpost them to the people and organisations that can best support them.
Results categories
Some women told us that it can be difficult to hear the word ‘limitations’ used when talking about their cytology review results. It is expected that around 40% of women have their cytology result changed (upgraded) following a review. Women said it can be difficult when this is described as an expected limitation of screening. We are reviewing how we communicate this information.
What women told us went well
Women shared many positive comments about their experience of the review process:
- They appreciated the non-clinical setting for meetings, which helped create a more comfortable and less confrontational environment.
- They highlighted the importance of having the doctor at meetings and having a consistent point of contact throughout the process.
- Many women described the review as thoughtful, considerate and open, with clear communication and opportunities to discuss concerns.
- Some women said the process exceeded their expectations, helped to reduce anxiety and feelings of self-blame, and that receiving an in-person apology was particularly meaningful.
Overall, feedback indicated that women felt supported, listened to and treated with care throughout what could be a difficult experience.
Next steps
Women have already made a real difference to the review process. We will continue to listen to them and proactively seek their feedback to continue to improve the process.