Northern Ireland family affected by cervical screening scandal demands answers

The family of a woman who died from cancer after a misread smear test has said there should be criminal consequences.

Lynsey Courtney's parents say that somebody "must be held responsible for the mistake that cost their daughter's life".

A special UTV News investigation has uncovered the scandal finding serious failings in cancer care which saw people wrongly given 'all-clear' screening results and left with the incurable disease.

Families have been left devastated knowing their loved ones conditions could have been treated, prolonging their lives.

Our investigation has found authorities knew of the extent of the problem for years while those screeners who had been identified as producing incorrect results continued their work.

UTV journalists Carol Jordan, Sarah Clarke and Deborah McAleese have trawled through documents, spoken with heartbroken families and campaigners of those directly affected by the scandal which saw some women wrongly given the all-clear for cancer, only to later find out the disease was too far advanced for treatment.

Campaigners have told UTV only a public inquiry will uncover the complete extent of the issue.

Lynsey Courtney was only 30-years-old when she died from cervical cancer in 2018.

Callum Courtney has just turned 18 but he has spent all of his teenage years without his mum.

Raised in her place by Lynsey’s parents, Sandra and Ron, Callum has grown into a confident, articulate young man. A son Lynsey would have been proud of and who bears a striking resemblance to her.As they leafed through photo albums of Lynsey - posing in her Girls’ Brigade uniform, playing for Armagh Ladies hockey club, winning swimming competitions and performing as a dancer - they all recalled the type of person she was.“Lynsey was a very lively person and she loved life. Dance was her passion. She did a lot of competitions and she really just enjoyed them - really bloomed when she took part. She just loved life. Yes, she really did,” her mum Sandra told UTV at their home in Portadown.Callum agreed: ‘’She was such a lively person, real bubbly. Mum would have brought a smile to everyone's face.

"She was just a real inspiration to everyone and that is what I live by. I live by her legacy. To fulfil her dreams as well as my own.’’ He admitted how much he misses his mum but said he has to ‘keep going’.‘’She'd want me to have a big smile on my face all the time. She'd want me to succeed in life. I want to go on to be a teacher. She worked in a school as a classroom assistant and taught dance too. So I want to teach. She'd be happy with that.’’It broke Lynsey’s heart not to be able to take her son to his first day of secondary school but at that stage her cancer was too advanced. Instead she tenderly helped get him ready from her hospital bed. Within days the 30-year-old had passed away.The diagnosis came as a huge shock as Lynsey’s first ever smear result had come back clear and she had just been for her next - three years later - as recommended.Recalling the moment they found out, Sandra said that Lynsey took the news first - alone with the doctor - insisting her mum remained in the waiting room.‘’Then the doctor that was dealing with her brought me in and said: I've rung your sister. So I knew something wasn't going right. And she told me that Lynsey had cancer.’’The emotion of that moment is still raw for Sandra, she broke down momentarily then composed herself and continued: ‘’So we all had a cry together. Then we had to rally, you know and we said we're going to beat this.‘’Lynsey just had a brilliant attitude that she was going to beat this. She really tried to protect us, tried to protect me because I'm quite a weepy person.“She wanted to be there for Callum, to be able to do everything and try not to disrupt his life, just to keep things going as normal.”Lynsey’s focus was her treatment and healing but she did at times question how she came to be so unwell so quickly.

‘’Lynsey herself would have said when she had more thinking time, when she was in hospital, you know in 2013 everything was all right then in 2016 I'm at this level? What has happened? And she said when she got better she would want to talk to somebody about that,” Sandra said.‘’So the reason we as a family have pursued this is because it was on Lynsey’s wish list. We wanted to say we've done this for you. But we never ever thought that was the answer that we would have got. Not in this day and age.’’The Courtneys were called to a meeting with senior consultants in the Southern Trust less than six weeks after Lynsey’s death. The memory of the day is clear in Ron’s mind.“I sat at the bottom of the table. Sandra was closer to the top of the table. We were facing the consultant and you could see this person was agitated because they were rubbing their hands. “They didn't want to look at us directly in the face. And I’m no body language expert, but I know when somebody is anxious. They had something that they really didn’t want to share. Their face was red. Then all of a sudden, they said to Sandra about being sorry about Lynsey and so on.“We took it at first that they were being nice about Lynsey's death and then the next thing hit me like a ton of bricks.“They said: ‘I am awfully sorry. If only I had seen them at the time, things would have been different’.“I thought, 'What? What do you mean different?'. Your mind starts to work overtime. You start to think what do you mean things would have been different?’’The Trust admitted that there were cancer cells on Lynsey’s slide - a mistake which turned out to have fatal consequences. But in a subsequent meeting this time attended by Sandra and Lynsey’s brother - minutes of which were seen by UTV - they asked if the work of the screeners involved in Lynsey’s case had been rechecked, given what had happened to her.They were told no. One consultant even questioned the need to do so.Sandra was shocked: “Well, I just thought in the environment that I work in, if something went wrong, you know, everybody looks back to see what happened.‘’Management or whatever, looks back to see where I can be made right. So it won't happen again. “I just thought it’s common sense that anybody in that type of work and especially in the seriousness of that type of work that would be one of the first things that they would do - to stop it from happening again. “I really can't believe in this day and age that they actually didn’t.”When UTV asked Sandra if she thought had they listened to the family and acted quicker to check the screeners’ work, Erin Harbinson, whose three smear tests were misread and who recently died, could potentially be alive today, her response was scathing.“Really I don't want to comment on that. I have my own thoughts on that. And that's something the trust will have to answer for,” she said.It was a further five years after the Courtneys’ crucial questions before the Southern Trust would call a review into cervical screening - which they say is due to be completed this month and which has affected thousands of women.Sandra was appalled when she heard about the recall.‘’Oh, my goodness. It really floored us as a family. We couldn't believe it. You know, we always thought when we brought it to the attention of the trust that even if there was one or two people. But never in my wildest dreams did we think 17,500.“I actually had to go to bed, you know, it just floored me, really. It hurt me. And that's when we realised that nothing ever was put in place from Lynsey,” she said.A further question the Courtneys have struggled to get an answer to is why a serious adverse incident in relation to Lynsey’s case was never declared. It is inaction which they believe should carry a criminal sanction.“Somebody has to be held responsible,” Ron said.“It's as simple as that. And that's what we're asking for, for somebody to be held responsible for a mistake that caused our daughter's life. “If anybody killed somebody in their own car it’s vehicular manslaughter. They're held responsible. Even though it may have been just an accident, they're still held responsible. “Because that caused the death of a person. So why should somebody here not be held responsible? It's the same crime. I think it's an avenue that could be looked at. Definitely.’’But it is the lack of transparency and candour which has really pained the Courtneys and compounded their grief.‘’If there's nothing to hide, why not just tell us? If somebody has something to hide, they'll do what they can to cover it up. “But if somebody is innocent and has nothing to hide, they'll tell you everything you want to know.“Well, then just tell us. Give us the information. If you have nothing to hide and you've done nothing wrong, just give us the truth. It's as simple as that,” said Ron.‘’Take ownership. Tell the truth. And yes, it might be hot and bothered for a while, but people can move on and they will definitely learn from this,” said Sandra."We want Lynsey’s death not to be a waste - if we can get this sorted and other people won't die from the same mistake. Fix the mistake, fix the problem and other women’s lives can be saved,’’ added Ron.“Lynsey is not a name on a spreadsheet. She's not just a number, or something on a petri dish, just one of those things that happened. No. Lindsay was a person, a dignified human being. We need to find out exactly the reason why this happened to make sure that it doesn't happen again to any other family.”

Following UTV's investigation into the scandal, we approached the Department of Health, Southern Trust and Public Health Agency for comment.

None provided a spokesperson, instead they provided statements.

A Southern Health and Social Care Trust statement said: “The performance of any screener can fluctuate for a range of reasons. There are systems in place to pick this up and screeners are given annual training to keep their skills up.

"During the period 2008 - 2021, some of our screeners performance did fall below the recognised standard. The underperformance was identified by us at the time and actions were taken to deliver improvement.

"However, in some years, the performance of some screeners did not reach the required standard despite having had the required update training and support. This was not recognised and we apologise for this. In 2021 we took action to address screener underperformance including some of our staff ceasing screening duties."

The Southern Trust said senior laboratory staff notified its management team that they had concerns about performance in some steps of their laboratory’s screening system.

"To fully investigate these concerns, we brought in The Royal College of Pathologists (RCPath) to undertake an independent assessment of our cervical screening services and then we published their report on our website.

"The report found that for some screeners, the number of times performance dropped during the period 2008 to 2021 was a concern and they were not satisfied that the actions taken by the Trust were sufficiently robust.

"The RCPath Report contained recommendations and we have worked with the PHA to implement them in full."

The trust said its major review of tests for 17,500 women with the PHA in October 2023 was undertaken as a precautionary measure.

Its statement continued: "We assessed all women’s cervical smear histories in the Southern Trust since 2008 and identified the women who are affected and were to be included in the review.

"The Cervical Screening review will be completed within days and nearly all the women will have received an outcome at this stage. The results confirm that the vast majority of previous smear results are unchanged and have been confirmed as normal."

It said women with a diagnosis of cervical cancer were not part of The Cervical Screening Review.

"These women with a confirmed diagnosis of cervical cancer have their screening history reviewed through an audit of invasive cancer for learning and improvement purposes. No Cervical Cancers have been identified to date in the Cervical Review.

"The Cervical Cytology Review is due to conclude this month, after which a factual report will be produced before a detailed analysis of all findings will be undertaken. The Health Minister has advised that he will await the outcome of these processes before determining any next steps."

The trust said the Belfast Trust will provide the regional one-site Laboratory service for the NI Cervical Screening Programme.

"It is essential that women keep coming forward for their cervical testing when invited to do so,” the trust said.

The Public Health Agency said it recognised the 'serious shortcomings' identified in the RCPath Consulting report. It also acknowledged the 'distress and uncertainty' this has caused for many women.

"It is important that lessons are learnt," the PHA statement said.

"The cervical screening programme in Northern Ireland is very effective at detecting early cell abnormalities which, when treated, can prevent cancer and save lives. Together with the HPV vaccination programme, which began in 2008, it is reducing the incidence of the disease here.

"It is essential that women come forward for their cervical smear test when invited to do so. This will continue to save lives.

"The Northern Ireland Cervical Screening Programme introduced primary HPV testing into the cervical screening pathway in December 2023, which has increased the ability to detect early cell changes that could lead to cancer. Nearly all cervical cancers are caused by persistent infection with high risk types of human papillomavirus, known as HPV.

"A diagnosis of cervical cancer is devastating and our thoughts are with those who have been diagnosed with cancer and their loved ones.

"Screening by cytology, which was the previous model, is only expected to pick up 75% of abnormalities, so the screening history of all cases of cervical cancer are reviewed for learning and improvement purposes as standard practice. A good screening programme will find most, but not all, abnormalities.

"Following receipt of the report by RCPath Consulting, a review of historical slides in SHSCT was commenced, and this is due to conclude shortly. The findings of the review will be analysed in detail and a report produced. It will be important to consider the findings of this and identify any learning. We recognise that the slide review in the SHSCT has caused upset and concern for many women."Our cervical screening programme is essential in reducing the incidence of cancer and saving lives, but it can only work if women attend for screening when invited.

"Northern Ireland has an excellent cervical screening programme, and the number of cervical cancers in women who are eligible for screening has decreased significantly since 1988, when the screening programme was launched. We anticipate that this will improve further with the move to primary HPV screening and continued high uptake of HPV vaccination."

The Department of Health said the findings of the RCPath report were 'clearly unacceptable'.

“It is essential that we understand and learn the lessons from what has happened within the Southern Health and Social Care Trust," a statement from Health Minister Mike Nesbitt said.

“The Cervical Cytology Review (a review of laboratory slides) is due to conclude later this month, after which a factual report will be produced before a detailed analysis of all findings will be undertaken. This analysis will be supported by the appropriate independence. It is important that we await the outcome of these processes as they will help determine our next steps.

“As health minister I remain committed to finding the most appropriate method to understand what happened and to learn lessons, to ensure that our screening programmes deliver on behalf of our population.”

Catch up with the latest UTV Live on ITVX

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know.