Commitments to culture of openness were just lip service

In May 2007, Rebecca O’Malley, victim of a cancer misdiagnosis, wrote in this newspaper: “I am convinced that neither fine words nor gentle persuasion will ever be sufficiently powerful to ensure that medical errors are made known to the patient and recorded carefully in a central register.

Commitments to culture of openness were just lip service

In May 2007, Rebecca O’Malley, victim of a cancer misdiagnosis, wrote in this newspaper: “I am convinced that neither fine words nor gentle persuasion will ever be sufficiently powerful to ensure that medical errors are made known to the patient and recorded carefully in a central register.

“I am convinced that it must be made mandatory.”

Scenes on the steps of the High Court, played out with frightening regularity, show how little progress has been made since the headline-making days of Ms O’Malley, a mother of three from Ballina, Co Tipperary, whose misdiagnosis led to a mastectomy; whose courage and persistence led to a Hiqa review; and whose fearless challenge to those in authority forced promises of greater transparency — even if it now seems that commitments to a culture of openness were little more than lip service.

The case of Vicky Phelan, dominating the headlines this week, is proof that having a voluntary open disclosure policy isn’t working.

How many members of the general public recognise the name Angela Tysdall? No? Me neither. She’s the HSE national lead for open disclosure.

Vicky Phelan is the latest, in a long, sorry list of litigants, forced into the courts to seek an explanation for what went wrong, hoping for an apology — an apology that in most cases is not forthcoming.

Worn down by the legal process, these sick, exhausted litigants almost inevitably settle with no admission of liability.

Vicky Phelan has suffered catastrophic consequences as a result of an incorrectly read smear test which failed to identify pre-cancerous abnormalities in 2011. She was diagnosed with cervical cancer in 2014.

The HSE carried out a review of her screening history and discovered the 2011 blunder by the US lab that reads the smears.

For reasons that no-one has yet been able to explain — including the head of the national cancer control programme, Jerome Coffey, nor the head of CervicalCheck, Prof Gráinne Flannelly, — this 2011 cock-up, revealed to the HSE in 2014, was not passed on to Ms Phelan until 2017.

In the past 48 hours, information painfully extracted from the HSE shows that 206 other women diagnosed with cervical cancer find themselves in a similar position to Vicky, in that their initial smear results also erroneously failed to indicate the potential for cancer. This almost inevitably means they did not receive interventions in a timely fashion.

However, as in the case of Ms Phelan, no-one in the HSE could say if all 206 women have been notified that their slides were subject to review, or made aware of what the review findings were.

Clinical director of CervicalCheck, Grainne Flannelly
Clinical director of CervicalCheck, Grainne Flannelly

In fact, no-one in the HSE appeared to know until yesterday, until Health Minister Simon Harris put it out there just how many women could potentially find themselves in Vicky Phelan’s situation.

It was the first question journalists asked when it emerged in Ms Phelan’s court case that she was not the only one affected by a smear test cock-up.

Yet if the HSE was preparing to go into court and defend itself against Ms Phelan’s claims — even though ultimately it didn’t have to because the case against it was struck out — it surely had those figures at its fingertips?

It surely has all those figures at its fingertips, because is that not the purpose of clinical audit — to examine the data and to learn from it?

Ms Phelan’s case ended in a settlement of €2.5m against the US laboratory that provided the faulty reading of her smear. There was no admission of liability.

The HSE, now that it’s been found out, has been very sorry all week for what happened to Ms Phelan. In fact, it hasn’t stopped apologising, at every turn, on the airwaves.

Vicky and Jim Phelan, pictured with their solicitor, Cian O Carroll leaving the Four Courts on Tuesday.Photo: Collins Courts.
Vicky and Jim Phelan, pictured with their solicitor, Cian O Carroll leaving the Four Courts on Tuesday.Photo: Collins Courts.

Sorrow is all well and good, albeit belatedly, and too late altogether for Vicky Phelan. But what people need now is reassurance. Women need to be reassured that the national cervical cancer screening service is up to scratch.

Women need to be reassured that if errors are discovered, those mistakes are communicated immediately. Doctors need to be sure who is responsible for that communication.

If women cannot be adequately reassured, the future of Cervicalcheck is in jeopardy, and that would be an awful pity, given that it has led to the detection and treatment of cancer in 50,000 women since its inception in 2008.

And if there are concerns about cervical screening, how long before public anxiety heightens in relation to other national screening programmes, such as BowelScreen, Breastcheck, the National Diabetic and Retinal screening programme?

Public confidence is vital to the success of population screening and if that is fatally damaged, it could have far-reaching consequences for cancer mortality rates in Ireland.

We learned at our mother’s knee that honesty is the best policy, but that learning has been lost for a long time in the health service.

As a consequence, any woman who, over the next month or two, receives a letter with the Cervicalcheck logo, will quake at the knees.

Will it be to tell her she has a routine screening appointment or will it be to inform her that she was part of a

review that found earlier screenings failed to detect abnormalities, which, had they been detected, could have prevented the cancer she now has?

As Vicky Phelan, said, there are no winners in this.

But if it forces mandatory open disclosure, as Mr Harris is now indicating, then maybe we can say progress has finally been made, towards ensuring the patient hears the truth, in the way Rebecca O’Malley envisaged more than a decade ago.

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