By Bill Heaney
There was a swift reaction in the Scottish parliament yesterday to the cervical screening scandal which sadly led to the death of one woman patient.
Tory MSP Annie Wells thanked Cabinet Secretary Maree Todd, pictured right, for her statement on the matter – “She has shared deeply distressing news with the Parliament.
“My heart goes out to the family of the woman who has tragically lost her life, and to all the women affected. As the minister said, many women will be concerned after today’s revelations, and I echo her statement that anyone concerned should contact Jo’s Cervical Cancer Trust.”
“The minister mentioned 500 women who had hysterectomies before 1997, and that those are recorded in an older part of the medical record system.”
She asked: “How long will it take for a full review into the records, and has any of that already been completed?”
Ms Todd told her: “The same adverse event management team that oversaw the review of the post-1997 group will continue to oversee the review into those who had their subtotal hysterectomies before 1997. That expert group includes very senior and experienced clinicians, pathologists and public health experts.
“The work of auditing the records will be carried out by individual health boards, as was the case for the participants who had subtotal hysterectomies after 1997. That work has already begun. I hope that it will be concluded by the end of July, and that those who are identified as wrongly excluded will be contacted very shortly after the work is completed.”
Dumbarton MSP Jackie Baillie, left, commented: “This is an extremely serious situation, and our thoughts are with the women who have been affected. The truth is that we do not yet know the full scale of the error; it could impact on many more women than the 220 excluded from the screening programme since 1997. It is critical that women are contacted urgently and offered information and support.
“Why was the issue not picked up by audits of the screening programme in the past? When will all the women affected be not only identified but seen by a clinician? Will there be additional specialist clinics in every health board area?
“The minister will be aware of the concerns about capacity and a significant backlog in screening, with something like 180,000 tests delayed because of the pandemic and delays of six months or more for those who have been screened and need treatment.
“Therefore, what additional resources will be provided—urgently—to cope with the serious situation that we are discussing as well as to catch up with the backlog?
Maree Todd replied: “Because of the range of errors involved, we think that it is prudent to go back and examine the records of all women who have had hysterectomies to ensure that no errors have occurred. That means that the number of women who might be involved could be larger.
“The number is about 170,000 women; however, bearing in mind that the vast majority of women who have hysterectomies in Scotland have total hysterectomies, we expect that the vast majority of those women will have been correctly excluded. I know that it is uncomfortable to have to wait to be contacted, but we are working as fast as we can to resolve the issue.
“In relation to additional resources, around 200 women have been asked to attend their general practitioners for a screening. I do not expect that to produce an undue burden on general practices; very few will have more than one woman involved. In relation to the two groups of women who have been called, had their letters and been given an appointment at the hospital, we have provided extra resources to several health boards who wanted to put on additional clinics to ensure that that did not impact on the services that are currently being provided.
“On invasive cancer audits, the new national methodology was introduced in 2014. Health boards were doing audits before that. I can say only that no cases were found through that national audit system until 2020.
“The women who have been wrongly excluded have been contacted by letter. Those letters went out on Tuesday this week and so should have arrived yesterday or today. The letters highlight to the women that, if they are required to make a GP appointment, they are to telephone and highlight that they have been contacted by letter and wrongly excluded.
“We also sent letters to the women’s GPs and we have briefed a variety of professional groups, including medical directors, directors of public health, NHS boards, NHS executive directors of nursing, GPs, the Royal College of Obstetricians and Gynaecologists, the Royal College of General Practitioners, the Royal College of Nursing and cervical screening programme leads in all four nations and Ireland.
“The reason for that briefing is to make sure that everybody is aware of how high a priority the women are. We have also added a digital tag to their records so that, at every stage of the system, as those women progress through the process of checking their situation, they are prioritised and fast tracked.”
Sandesh Gulhane, a Tory GP said: “I declare an interest as a practising doctor. My thoughts and prayers go out to the women and their families who have been affected by this terrible error. It is simply awful. It might shake women’s faith in the cervical screening programme and, as a GP, I must be clear that attending cervical screening is vital.
“I promise that the swabs that I and other GPs take perform early warning detection of potential cancer, so please attend appointments, and do not be put off. If people experience any symptoms, they should please contact their GP.
“Is this a failure of coding by the operating surgeon, a system-wide issue or an information technology issue?”
Maree Todd said: “As might be expected, we have looked closely at the points where the errors appear to have occurred, and there are potentially four such points. For some women, there has been a mismatch between the operation that was proposed and the operation that was done. That usually happens for technical reasons that occur during the surgery and, as a consequence, a proposed total hysterectomy becomes a subtotal hysterectomy. That fact might not be noted in the discharge summary and instead the discharge summary letter will be based on the theatre list—that is, based on the planned operation. The GP will see that and request removal from the call-recall system.
“A second error that might have occurred is that of subtotal procedures being incorrectly coded in theatre, reflecting a mismatch between the proposed and actual operation or simply a misunderstanding of what a subtotal procedure is. There has also been some incorrect coding in labs; subtotal specimens might contain some cervical tissue and have been incorrectly coded as total hysterectomies when those patients were being considered for continuation on call-recall. Finally, the patient may have been removed from call-recall despite accurate information being conveyed to primary care following surgery where the cervix is retained.”
She added: “Those are complex issues. I am mindful that there is not a single solution, but I agree that those are important matters to tackle. I will outline some of the work that is already happening. In initial sample-taking training, NHS Education for Scotland provides information for sample takers to help them address the potential issues in assisting disabled people at their cervical screening appointment, along with many other groups that might experience barriers to screening.
“Further, our advice for sample takers is set out in national guidance. If someone is unable to leave their home for a cervical screening appointment, their NHS board can use a multidisciplinary team member to provide support that will allow them to have their sample taken. That is done on a case-by-case basis, depending on the needs of the individual.
The Scottish Government has made funding available through its screening inequalities fund to allow health boards to tackle inequalities in access to screening. In addition to the £5 million that we have made available over the past five years, we will be exploring how best to use an additional £2 million over the next two years to drive long-lasting sustainable change in cancer screening programmes. That will align with the work of the national screening oversight board, which also has a key focus on tackling inequalities across all our screening programmes and is developing a strategy to do so.
“I can assure the member that we are working as fast as we can through those records to identify women who have been wrongly excluded pre-1997. I am afraid that I cannot give her an exact date, but we aim to have that work completed by the end of July and to inform those women as soon as we can after that, which I would expect to be early August.
On the second point, we are conducting an audit of all women who have died of cervical cancer, and we will examine whether they are involved in this incident. If they are, the NHS will get in contact proactively with those families to explain the situation.
“Undoubtedly, we have to ensure that women have confidence in the system. As members have said, it is an extremely effective way of preventing cancer—around 5,000 lives are saved through it every year. We recently had cervical cancer week, for which Scottish Government buildings here in Edinburgh were lit up. Regular campaigning is conducted by Jo’s Cervical Cancer Trust and, later this year, the Scottish Government will be conducting a campaign to alert women to the practicalities of the screening programme and highlight just how important it is to have their cervical screening.
Christine Grahame (Midlothian South, Tweeddale and Lauderdale) (SNP) asked: “I note from the minister’s statement that some of the women are now beyond the eligibility age for screening, which I think is 64. Given that life expectancy for women in Scotland is over 80, is there any scope for extending automatic screening eligibility to at least age 70, for not just those but for other women?”
The Minister said: “At present, screening can extend up to age 70 for those who have had a non-routine result that requires follow-up or treatment, so those high-risk women are screened up until the age of 70. The UK national screening committee keeps the eligible age ranges for screening under review, using the best available evidence, and Scottish ministers would work to implement any change that the committee recommended.
Four health boards have requested funding to provide additional clinics: Lanarkshire, £28,000; Lothian, £8,098; Greater Glasgow and Clyde, £5,000; and Fife, £2,700. No other boards have requested funding, but we are happy to keep the situation under review and will provide further funding if needed, said the Minister.
This sounded like a pittance given the scale of the problem and the numbers involved.
But the Minister said: “We have also provided extra funding to Jo’s Cervical Cancer Trust. I fully appreciate how worrying the situation will be for people who have been affected. Everyone who is affected will receive a personalised letter from their health board to apologise for the situation and provide information about the incident in the cervical screening programme. Jo’s Cervical Cancer Trust has made its helpline available nationally for women to call.
“I advise against women contacting their GP to find out whether they have been affected. I assure them that anyone who has been identified as incorrectly excluded from the programme, because they have a subtotal hysterectomy, will receive a letter directly from their health board. Those who are within the age range for the screening programme will be asked to contact their GP to make a screening appointment.
“The one exception that I make to that is that our advice remains that people should contact their GP straightaway if they experience symptoms of cervical cancer, which are unusual discharge, or bleeding after sex, between periods or after the menopause. Those symptoms are generally caused by something else, but it is vitally important that women who experience those symptoms attend their GP and have them checked out.”