Reports from the RCOG Expert Panel Review of cervical screening

The HSE has written to more than 1,000 women or their families who agreed to take part in the RCOG Expert Panel Review of cervical screening.

The Royal College of Obstetricians and Gynaecologists (RCOG), in the UK, is leading the independent review.

The review was set up by the Department of Health. Its aim is to provide women who took part in CervicalCheck, and who developed cervical cancer, with independent clinical assurance about the timing of their diagnosis and treatment.

Individual reports

The RCOG is completing individual reports for women or their families. The HSE has begun to receive these reports in stages.

Once we receive these reports, we need time to validate them. This is to make sure they belong to the correct woman or her next of kin in cases where a woman is deceased. We expect to receive all reports from the RCOG by the end of September.

We want to ensure that those women and families who agreed to take part in the review are the first to be told about the findings. This is part of our commitment to put women first when it comes to information related to their health and cervical screening.

Letters sent to women or their next of kin explain:

  • that the review is nearly complete
  • how they can get their individual report
  • what they can expect to see in their report

We worked with patient representatives to develop an information booklet. We have included this booklet with the letters. This is to explain the above information and to address any questions women or families may have.

Categorisation of results

The RCOG review panel received smear test sample slides from more than 1,000 women who took part in the review. These were samples that had been previously analysed by CervicalCheck. These women developed cervical cancer.

The review panel looked at these samples again. This was to see if it there was any failure to prevent cancer or to recommend treatment at an earlier stage.

The RCOG Review Panel has categorised results of reports into these 2 areas:

Your result agrees with the original CervicalCheck result:

If the RCOG Review Panel found the same result in your smear test as the result originally communicated to you from the CervicalCheck screening programme, your report will say that the review result agrees with the original Cervical Check result.

This is also known as a concordant result.

Your result disagrees with the original CervicalCheck result:

If the RCOG Review Panel found a different or changed result in your smear test than the result originally communicated to you from the CervicalCheck screening programme, your report will say that the review result disagrees with the original CervicalCheck result.

This is also known as a discordant result.

Based on their findings, the RCOG Review Panel will determine whether or not an opportunity to detect abnormal or pre-cancerous changes, at an earlier stage was missed.

This will be explained in more detail by the RCOG Review Panel in your individual report and you can also discuss this more in the meeting with a healthcare professional if you choose to attend.

How you will receive your individual report

It is our priority to put women and families’ needs first. We want to make sure that those who took part in the review are told its findings first. We also want to ensure that they get their report in an open, sensitive and timely manner.

We consulted with patient representatives to understand how best to provide individual reports. Based on this, women or their families will have 5 options.

These are:

  • to receive their report by post, and no subsequent meeting with a healthcare professional.
  • to receive their report by post, followed by a meeting with a healthcare professional.
  • to receive and discuss their report in a meeting with a healthcare professional.
  • if there is a change in their result, to have a meeting with a healthcare professional; if there is no change in their result, to receive their report by post.
  • to not receive their report currently and not have a meeting with a healthcare professional.

Women and families can change their minds about how they would like to receive their report at any stage.

Women or their families can tell us how they would like to get their report by calling our Freephone information line on 1800 832 191. The lines are open from 9am to 9pm, 7 days a week.

Our information line staff won’t have a copy of your report. But they can try to answer any questions you have about these 5 options. If they can’t answer your question, they’ll take your details and arrange for you to receive a call back.

Where we don’t hear from women or their families within a week, we will contact them directly to make sure they received our letter and information.

If you request your report by post

We expect to begin posting the first available reports week beginning 16 September. All requested reports should be sent by week ending 18 October.

If you request a meeting with a healthcare professional

Everyone who took part in the review will be offered a meeting with a healthcare professional. This will give you an opportunity to ask any questions you have.

Women and families with the highest needs will get their meeting first.

This includes:

  • women with a discordant (changed) result to that first reported by CervicalCheck
  • the next-of-kin of women who are deceased
  • the 221+ women or families affected by the original CervicalCheck audit
  • women who will receive partial reports from the RCOG. This is due to slides still being sought by labs

Dates of meeting

We will start to issue appointment letters, to women or families who request a meeting, in early September 2019. We will try to give as much notice as possible.

Meetings with the above priority groups will begin on the week beginning 16 September 2019. They will take about 8 weeks to complete.

After that, meetings will take place for other women or families. This means that it will take longer to meet some women or families. But we will try to meet with everyone who requests a meeting as soon as possible.

Support services

Women and their families will receive details on the support services available to them in their letters.

Specific supports will be offered to women or their families who receive a discordant (changed) result. This support will be available through Community Liaison Officers. It will be similar to the support services offered to the 221+ women, or their next of kin, affected by the original CervicalCheck audit. These supports are also outlined in the letters we have sent.

Overall report

The RCOG will also provide an overall report of their findings to the Minister for Health. This is expected at the end of October.

It is expected that it will include:

  • a summary of the overall findings of the review
  • recommendations for the CervicalCheck programme

It will not identify any individuals.

Working with the RCOG and women and families

Throughout this process we worked closely with:

  • patient representatives
  • the RCOG
  • the Department of Health
  • healthcare professionals

This is to make sure every effort is made to communicate reports findings with women or their next-of-kin in an open, sensitive and timely manner.

We have also been providing support to the RCOG review panel to help it complete its work.

This has included:

  • making sure that data for eligible women or their next-of-kin was correct
  • making sure that those eligible could give informed consent
  • helping to get more than 1,700 cytology slides from labs, transfer them to the review panel, and then arrange for their transfer back to the labs of origin
  • planning the correct communication of individual reports to women or their next of kin

GPs

We will only share copies of individual reports with GPs when women or families agree to do so. They can give their consent by calling our Freephone information line on 1800 832 191. The lines are open from 9am to 9pm, 7 days a week.

We have sent a general update on the RCOG review to all GPs registered with CervicalCheck. We have also told them that we are writing to women and families.

We have also sent an update to colposcopists working with CervicalCheck.