KAROL SIKORA: Staff at breast screening clinics must have noticed fewer women over the age of 68 attending so why DIDN’T the alarm bells ring sooner?
As an official assessor for the NHS breast cancer screening programme for three years in the late 2000s, I was hugely impressed with the great work it was doing.
Now my confidence – and that of hundreds of thousands of British women – has been undermined by yesterday’s revelations.
How is it possible that staff at breast screening clinics failed to notice that far fewer women over the age of 68 had been attending for the past nine years?
Surely, those in the 68 to 71 age group receiving an invitation to attend for a mammogram were not ignoring it en masse?
The problems with breast cancer screening date back to 2009 and will raise questions for both the Tories and Labour on why it was not uncovered sooner
What about those women who, according to records, had attended every previous three-yearly screening? Why would they stop now?
Alarm bells should have rung sooner based on a simple observation of the patients who were coming and going.
The fact that they didn’t is, I think, indicative of a problem – a blind spot – that exists across the health service.
We have become too reliant on technology, on computerisation and so-called artificial intelligence.
And to make matters worse, the NHS has the worst computer system of any health provider in Europe, including most of Eastern Europe.
Ten years ago, we wasted £12billion of taxpayers’ money on a national IT system that just didn’t work.
Trixie Gough, pictured in the days before her death in 2015, is among 450,00 women who never got a final cancer scan that may have saved her life after a ‘colossal’ NHS IT failure
And we haven’t had anything that works properly put in its place since.
So from 2009 onwards when a ‘computer algorithm failure’ meant that women approaching their 68th birthdays were not invited for what would have been their final mammogram under the national programme, there was no in-built safety net to alert the system’s human operators to the problem.
And because NHS staff assume the technology is infallible, they are no longer as tuned into what they are seeing or what their instinct and experience might be telling them – that this age group was now absent from their lists.
Q&A: WHAT TO DO IF YOU MISSED OUT ON A BREAST CANCER SCREENING
Q: I missed out on a final breast cancer screening, what can I do?
A: Jeremy Hunt today said surviving women who are still in their early 70s will be offered a catch-up screening. A helpline has also been set-up.
All women affected who wish to be screened will be invited to one in the next six months – he said most would be screened sooner than that.
The NHS Choices website provides further information and the option to contact your local unit to book an appointment.
All affected women registered with a GP will receive a letter by the end of May with further information.
Anyone concerned can contact the helpline on 0800 169 2692.
Q: How do I know if I did not receive my screening invitation?
A: All women affected who are registered with a GP will be informed by letter from Public Health England (PHE) by the end of May 2018.
Women affected aged up to their 72nd birthday will receive a letter inviting them for a catch-up screen.
Women aged 72 to 79 will receive a letter providing clear information on what to do next if they want to have a screen.
These women, aged 72 to 79, will be asked to contact the helpline.
Women, aged 70 to 79, currently registered with a GP, who do not receive a letter from PHE can be assured they are not affected and do not need a catch-up screen.
Q: How many women have been affected by the scandal?
A: Between 2009 and the start of 2018, up to 450,000 women aged between 68 and 71 were not invited to their final breast screening.
Women in England between the ages of 50 and 70 are currently automatically invited for breast cancer screening every three years.
Q: Who is eligible for compensation?
A: Mr Hunt made clear in his comments in Parliament that any case where the missed scan is established as a ‘likely cause of death’ would be eligible for compensation.
Previous negligence cases over cancer diagnosis have led to payouts of between £65,000 and close to £1million.
For more information call the helpline on 0800 169 2692.
Q: What will prevent something like this from happening again?
A: The Health Secretary has ordered an independent inquiry to find out exactly what went wrong, how many people died and who is entitled to compensation. He has promised the Government will be ‘transparent’ about what went wrong.
The review, to be led by the chair of the Macmillan Cancer Trust and chair of the Royal Marsden Hospital, will take around six months.
I am also concerned that women weren’t complaining about not receiving an appointment for that final screening.
How many of the 450,000 who missed out had demanded: ‘Where is my appointment?’
That is not to blame the women in any way. But it is a cultural problem in Britain.
Women can get the best breast cancer care in the world on the NHS, but often they have to ask for it, or even fight for it.
Many of us are from the ‘free milk at school’ generation and if we aren’t being looked after, we assume it’s because someone in authority ‘knows better’.
We are simply not conditioned to push for decent healthcare, to ask questions and demand our rights, and that must change. Public confidence will be further knocked by the revelation that this problem was first discovered back in January, but it has taken until now to admit it.
The Department of Health says it needed time to put a plan in place, but there was really only one option: to invite all those women who’d missed out for screening as soon as possible.
It is actually all we can do for them: tell them not to panic, but to get a mammogram if they want to. It will put their minds at rest or identify problems that can be dealt with promptly.
I can’t see any other way in which to reassure them. One mercy here is that breast cancer in older women tends to be significantly less aggressive and occurs more rarely than in young women.
Tragically, as the Health Secretary Jeremy Hunt said yesterday, there will be some women whose lives may have been shortened as a result of this computer failure, and we need to know how many.
Compensation lawyers are, no doubt, jumping up with glee, but class actions against the NHS will be complicated because of the difficulty in establishing if, on the balance of probability, a woman’s cancer was exacerbated by a missed screening session.
Longer term, the sad consequence of this fiasco will lead to women losing faith in the screening system. Even before this, as a nation we didn’t take screening as seriously as we should.
Only about 75 per cent of women invited to breast screening turn up for appointments, and compliance rates are particularly poor in the lower socio-economic groups. And yet early diagnosis is crucial if treatment of the disease is to be successful.
Health screening should be all about reassurance, rather than making people more anxious than ever.
We need to ensure that all the three NHS screening programmes – for cervical cancer, bowel cancer and breast cancer – are fully audited to ensure that there are no other similar IT problems lurking unseen. The public deserves no less.
We also need to sort out our NHS computer systems – as a matter of urgency. If budget airlines can run systems that get millions of people and their luggage around the world, why can’t our health service enjoy an equally efficient and effective nationwide system, too?
- Karol Sikora is Dean and Professor of Cancer Medicine at the University of Buckingham Medical School
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