Wednesday 15 August 2018

Withholding of patient data is indefensible

Deborah Coleman - Straight Talking

The CervicalCheck scandal continued to unfold this week as it is now estimated that up to 15 women could have died without being made aware that their cervical cancer diagnosis was delayed as a result of false negative results within the screening programme.

Given what we have heard in recent weeks, sparked by the bravery of Limerick woman Vicky Phelan, who has been told that her cancer is terminal, it is extremely difficult to have faith in the HSE and to some extent, the screening process itself.

The message is that screening works and that programmes like CervicalCheck have dramatically increased early diagnosis, and therefore reduced the numbers of cervical cancer deaths. However, while laboratory errors are devastating, the evidence is that unfortunately mistakes happen from time to time, and that there should be secondary checks within the system to reduce further the level of false negatives. Whether one result or thousands are misread, the importance of transparency for the patient remains the same. What is unforgivable is when these errors, human or technology-based are hidden from patients.

Letters between the CervicalCheck and healthcare professionals in relation to Ms Phelan's case indicate that there was a reluctance on any one body to take responsibility for telling the patient that an error had been made.

This is utterly indefensible and shows more regard for the consequences that would befall those responsible for the error than the patient.

I heard this case and many others like it that are expected to emerge as a 'human tragedy' but given everything we have learned in recent days, the HSE needs to view it as such.

For more than 15 months these letters flew back and forth, with Ms Phelan's personal information contained therein, but rather than making it a priority to have her informed, more emphasis was placed on who was going to do it.

We are talking about people here, women, mothers, wives - real people, not just numbers and lab results - whose lives have been cut tragically short because of this dreadful disease. If the screening programme fails them, then they are entitled to know that it has, and they are entitled to know for how long their information was kept from them.

Enniscorthy Guardian