Records check for women excluded from cervical screening programme

The records of just under 200,000 people excluded from the cervical screening programme are to be individually reviewed to provide reassurance that their exclusions were correct.

Women’s Health Minister Maree Todd announced the measure in a statement to updating Parliament on progress in addressing errors in the screening system. This follows the announcement in June that a small number of women wrongly excluded from screening had subsequently developed cancer, one of whom sadly died.

Health boards have already written to around 600 women following an audit of those who had been excluded from the cervical screening programme and whose records show they have, or may have had, sub-total hysterectomies.

The Adverse Event Management Team of expert clinicians set up to address inappropriate exclusions from screening has now recommended that everyone who has been permanently excluded from the cervical screening programme over several decades should also have their records reviewed.

While the overwhelming majority of these exclusions will be correct, it is likely that more people will be discovered to have been wrongly excluded. This wider review is likely to take at least 12 months to complete, based on the complexity and numbers involved. 

Clinical teams have also completed a review of the cancer registry to ascertain whether there are other cases where an exclusion may have contributed to a diagnosis of cervical cancer. While it not possible to be certain, there is a high level of clinical suspicion that in one case, a woman may have developed cervical cancer as a result of an inappropriate exclusion from screening. Separately, there is another very complex case where several factors appear to have contributed to a diagnosis of cervical cancer, including an incorrect exclusion from cervical screening. In both these cases, the women have sadly died.

Ms Todd said:

“I once again offer my sincere apologies to all those affected by these errors. In particular, I extend heartfelt apologies to the women who were excluded from the programme who went on to develop cancer, and to their families. I also recognise the anxiety this will have caused to all those wrongly excluded from screening.

“I know this further review will also concern people, however, I hope I can offer some reassurance. Firstly around 95% of hysterectomies carried out in Scotland are total, and women who have had total hysterectomies do not need to be screened.

“Secondly, the risk of cervical cancer in general is fewer than 1 in every 100 women in Scotland across their lifetime. Thirdly, there are dedicated NHS staff who are committed to completing this work as quickly as possible, and to bringing all their considerable expertise to doing so.

“I recognise that people whose records are being reviewed will want and need to know how long they will have to wait for the outcomes of this review. The NHS will make sure those affected are informed about progress, and I will update Parliament as often as required.”

Samantha Dixon, Chief Executive of Jo’s Cervical Cancer Trust said:

“This additional review is very welcome and every effort must be made to ensure that no woman will slip through the gaps during the investigations; this includes those who may have left Scotland since their surgery and those who have not yet responded to letters.

“While it is important to understand if opportunities to prevent this incident were missed, we must not lose sight of those affected, notably those who have lost loved ones or who are feeling anxious as a result of these announcements. Please know that Jo’s is here for you.”

Background

• All those known to have had a sub-total hysterectomy have now been contacted and reinstated to the screening programme, or offered an appointment with their GP or gynaecology where records cannot conclusively show they were correctly excluded from screening. From the audit of those who had hysterectomies after 1997, of those seen so far, only seven people seen at either their GP or a clinic have needed to be referred for further investigations, and no cases of cervical cancer have been detected
• A further audit of women whose hysterectomies were carried out before 1997  resulted in letters being sent to around a further 170 individuals by 18 August. Of these, 39 people were reinstated in the screening programme and invited to make an appointment for screening with their GP and 132 were offered a gynaecology appointment
• Screening is the most effective way of preventing cervical cancer. It can and does save lives, and the screening process itself is not in doubt
• Jo’s Cervical Cancer Trust continues to make their helpline available for anyone affected or concerned by this issue. It can be reached by calling 0808 802 8000 or via email at helpline@jostrust.org.uk
• The Scottish Government has provided additional funding to Health Boards so that gynaecology appointments can be offered as quickly as possible. In total, we have now provided over £60,000 to support both reviews, and we will continue to make financial support available for Boards who require it
• It has become apparent that some instances of incorrect exclusions were discovered in the course of previous data-checks, incidents and reviews in 2006, 2015, and again in 2016 and 2017. These were more limited reviews and it was believed that all issues had been resolved. However the Women’s Health Minister has asked Healthcare Improvement Scotland to take forward a review of the processes, systems and governance for the application and management of exclusions in the cervical screening programme in Scotland. An independent chair will be appointed in due course
• Anyone who has any concerns about the symptoms of cervical cancer – and these include unusual discharge, bleeding between periods or after sex, and bleeding after the menopause – should contact their GP straight away for an appointment