Action to address incorrect exclusions from cervical screening

Around 430 women incorrectly excluded from the Scottish cervical screening programme over the last 24 years are being offered fast-tracked appointments with GP practices or gynaecology services following an urgent review of cases.

An issue came to light during a routine audit of cervical cancer data in a single NHS Health Board. This found that a small number* of women had been excluded from the programme some years ago following a hysterectomy, but had unfortunately subsequently developed cervical cancer. Sadly, one of those women has died.

Most hysterectomies involve the removal of the cervix, following which there is no further need for cervical screening. However, sometimes a hysterectomy is performed, in which part or all of the cervix remains. Where someone has had such a ‘sub-total’ hysterectomy, the person should continue to be invited for cervical screening if they are within the eligible age range.

Unfortunately an urgent review has found that some of these women were excluded from the programme in error. The Scottish Government and Scottish cervical screening programme acknowledge the distress this will have caused and offer their sincere apologies.

In response to this situation, a national review is taking place of everyone who has been excluded from the screening programme. The initial part of the review has involved women whose records show they have had a sub-total hysterectomy, and whose operations took place from 1997 onwards.

NHS Health Boards have now written out to all those known to be affected, as well as some where records of the procedure they underwent are not conclusive, and will be offering appointments appropriate to suit their individual circumstances. Further work is underway to review the records of those who had sub-total hysterectomies before 1997, and to determine the risk of anyone else having been incorrectly excluded from the programme. NHS Health Boards will write to anyone who requires further investigation.

Women’s Health Minister Maree Todd said:

“I want to offer my condolences to the family of the woman who we now know died from cervical cancer after being excluded from the screening programme.

"These exclusions from the cervical screening programme should not have happened and I want to apologise to all those affected by this error.  I offer my heartfelt apologies in particular to the women who were excluded from the programme who went on to develop cancer, and to their families.

“Anyone whose records indicate they may have had a sub-total hysterectomy after 1997 and been wrongly excluded from screening will have received a letter or be in the process of receiving one within the next few days and will be offered an appointment appropriate to their individual circumstances.

“While some exclusions have been wrongly applied across Scotland, the vast majority will have been applied correctly and additional control measures have been put in place to prevent any new exclusions from being applied incorrectly.

“It is important to stress that the overall risk of developing cervical cancer remains low and people should not be unduly alarmed. The Scottish Government is providing funding to the charity Jo’s Cervical Cancer Trust to ensure its helpline is appropriately resourced and available for anyone seeking support or reassurance. 

“There is no need for anyone who does not receive a letter to take any action but it remains important for everyone, whether affected by this issue or not, to be alert for symptoms of cervical cancer and contact your GP practice if you have any. Further information on symptoms can be found on NHS inform.”

In partnership with NHS Scotland, the charity Jo’s Cervical Cancer Trust has made its national helpline available to anyone with concerns.  People can call the free helpline on 0808 802 8000 or they can visit the website at www.jostrust.org.uk or email  helpline@jostrust.org.uk.

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

“For those affected this may be an incredibly difficult time and we are here for anyone who needs support through our Helpline. NHS Scotland is acting quickly to contact everyone who may have been wrongly excluded from cervical screening, however swift action must be taken to identify what went wrong and ensure it cannot happen again.

“Cervical screening remains an important test and it’s important that women and people with a cervix, including those who have had a sub-total hysterectomy, continue to have access to it.”

Michelle Mitchell, chief executive of Cancer Research UK, said:  

“We are  hugely saddened by the impact this has had on people’s lives.  Screening relies on there being an accurate, up-to-date list of those who are eligible so invitations can be sent to the right person at the right time. It’s vital that this situation is learned from and never repeated.  

“If you have had a sub-total hysterectomy and are concerned that you’ve not received invitations for cervical screening, please give the helpline number a call.  

“Cervical screening plays a key role in preventing cervical cancer, by picking up signs of early cell changes before symptoms have a chance to develop. Anyone who receives an invitation should not let this announcement affect their decision to book or attend their screening appointment.  

“It’s important to remember that screening is for people without symptoms so if you have noticed any symptoms that are unusual for you, such as bleeding between periods or after the menopause or changes in your discharge, get in touch with your GP.”  

Background:

*The number of people affected in the initial incident is fewer than 5 and the exact number cannot be given due to the risk of identifying the patients involved.

• The Scottish cervical screening programme began in 1988 and routinely invites all women aged between 25 years and 65 years (extended up to 70 years for people where results from previous screenings show there are changes that need to be monitored). Prior to the 6 June 2016 the age-range was 20-60 years (up to 68 years for non-routine pathway)
• National guidance states that people who have had a total hysterectomy (i.e. complete removal of cervix) can be excluded from screening but anyone who has had a sub-total hysterectomy should continue to be screened regularly if they are within the eligible age range for screening.
• Further information on symptoms can be found on the NHS Inform at www.nhsinform.scot/cervicalscreening
• An urgent review has confirmed that some exclusions have been wrongly applied across Scotland. However, the vast majority of exclusions will have been applied correctly and additional control measures have been put in place to prevent any new exclusions from being applied incorrectly.
• People within the eligible age range for cervical screening, whose records clearly show they had a sub-total hysterectomy and should not have been excluded from screening will be invited to contact their GP practice and make an appointment for a cervical screening test, and will be fast-tracked for further assessment or treatment if necessary.
• Where it was not possible to establish from their records whether someone has had a total or sub-total hysterectomy, they will be invited to a gynaecology appointment for a discussion followed by examination to check whether the cervix has been removed, followed by screening if required.
• Some people who were excluded from the programme wrongly some years ago are now beyond the age (70) up to which screening is offered (i.e. the non-routine pathway). They will be given a gynaecology clinic appointment to discuss the next steps, with the offer of an examination to determine whether their cervix has been removed, with screening at the same appointment if necessary.
• Signs and symptoms of cervical cancer include unusual discharge, or bleeding after sex, between periods or after the menopause.  Those experiencing these should contact their GP practice. These are usually caused by something other than cancer but it’s important to have them checked.