‘We must force the HSE to be far more open with patients’

LEGISLATION may be needed to ensure the HSE is fully open with patients – unless there are major changes in health testing services instead, according to the Irish Cancer Society.

‘In the case of Vicky Phelan, the Irish Cancer Society is deeply concerned that it took three years to notify her of missed abnormalities in her initial screen’, it said. ‘The health service needs to display candour in situations such as these’.

The charity said that unless the Health Service Executive introduces the necessary changes, the State should introduce the necessary laws to ensure that the HSE operates in a fully transparent fashion with patients.

‘Unless further change is forthcoming, a duty of candour for state bodies needs to be put on a statutory footing, so that patients get the information relevant to them and to stop the same problems happening again and again’, it said.

The charity said there were ‘clear lessons’ from Vicky Phelan’s case for both the HSE and the National Screening Service. It added that in recent months it had seen a number of cases of poor communication and cancer misdiagnosis between the health system and its patients.

It also said it had received a number of calls from women concerned about their test results in the aftermath of Ms Phelan’s case but the society said it remains committed to CervicalCheck.

‘It is saddening to see cancer patients on the steps of the High Court’, it added.

Its comments came as a respected consultant oncologist called for an investigation into the screening system, saying we need a ‘transparent structure’ and ‘robust system’ in place to restore public trust in the process.

Professor Seamus O’Reilly, of Cork University Hospital, told RTÉ’s Today with Seán O’Rourke show that medical mistrust following this case will prevent people from availing of a ‘lifesaving intervention’ and getting a smear test.

‘I think that the more transparent you are, the easier it will be for everybody so I think if there’s an issue … where there was an error, open disclosure is what should happen – the patient has a right to know and the service that we would provide would be better; patient trust would be better,’ said Professor O’Reilly.

‘I would be concerned that if we don’t have a review of the service that is transparent and open, that society – women – will not trust the service, and also that patients who are being treated with cervical cancer in our community now …will wonder “What if?”

‘We know that this screening saves lives and I think we’re going to jeopardise the service by not being transparent about it.’

Professor O’Reilly said that the previous smear tests of anyone on the screening programme who has been diagnosed with cervical cancer should be reviewed within three to six months, with the results discussed with the patient during an open disclosure meeting.

‘No test in medicine is 100%,’ he said.

‘If you’re the patient who is the 1% error rate, it’s devastating, so we need robust structures in place where this can be identified.’

He added that Ms Phelan’s case shows that redress also needs to be given to patients quicker.

‘The other human aspect of this story, I think, would be the time and energy the family spent in pursuing legal redress at a time when cancer treatments were ongoing and when the implications of the current situation was apparent to the patient and her family and its implications for her as a mother raising a young family.’

‘We need robust structures in place’