Dr. Catherine Conlon:

In our study the post-12 weeks women we spoke to, had all sought care under section 11 for foetal anomaly. We did not meet with anybody who had sought care because of risk to life or health.

We heard the following from the group we spoke to. A diagnosis happens and it is a foetal anomaly that indicates severe life-limiting impacts - potentially fatal. The law only refers to fatal foetal anomaly. These women then enter into the process of clinical assessment to see whether they qualify under the Act. It is a very protracted process that makes a number of weeks pass. All of the women we spoke to had wanted pregnancies and therefore this was a devastating diagnosis. They then entered into the assessment process in Ireland. The thing that stood out for them was the length it took. There was revisiting, rechecking and further clinical assessment going into a multidisciplinary team, yet neither them nor their partner or family was represented in that multidisciplinary team. It was all happening in a room separate to them. They felt very distant from the decision-making, yet they felt they had a devastating loss.

Women in our study said that confining the law just to fatal anomaly was not meeting their needs. Where a diagnosis was of a severe life-limiting condition, they had concerns for the quality of life for the child and their capacity to raise a child with that diagnosis in the context of very limited supports for families raising children with disabilities in Ireland. That meant they felt their only option was to terminate their pregnancy. Some qualified for care in Ireland but more opted out of the process. It took so long that they ultimately decided to opt out of the process of assessment in Ireland and travel because they were concerned of timing out in Britain. They were then faced with having to travel from Ireland. They believed the law had changed and they would be looked after but now they were being denied care. That had a compounding sense of stigmatisation and being failed by their own healthcare service. They were travelling to a totally unknown service and incurring much cost. They were mostly going in distress and with huge challenges on how they would bring the remains of their baby home, who they wanted to honour and have a memorial service for. Accessing genetic services was also hugely challenging if you had to travel.

The sense of distress of this group of people in our study was acute and we say that in the report. We reported a lot of their direct testimony. We felt that needed to be shared. These people said they felt that repeal had changed their circumstances and that stories like theirs had persuaded the Irish electorate to vote to the extent of 66% supporting repeal, and yet they found themselves in those situations and were not cared for.