We are beyond disappointed to see that our contribution to the survey has not been accepted and that there is no mention of termination for medical reasons. We have participated in the preparation of this survey for over a year. We have given up our time and shared our expertise in an entirely voluntary capacity solely so that the best interests of our members would be represented to the HSE and HIQA. Omitting their existence and experience from this survey means that there will be no available data from which improvements can be made for people who terminate pregnancies for medical reasons and experience that specific and unique bereavement.

The home page of the survey very clearly defines the people who it caters to and TFMR is the only type of pregnancy loss over 14 weeks that is completely absent. As we have stated clearly and repeatedly during our participation in the survey preparation, in the context of abortion being illegal in this country until 3 years ago and the secrecy and stigma it still carries, people who have terminated wanted pregnancies will not feel included in this survey despite the fact that they are a legitimate cohort of bereaved parents. There will be no way to compare their experience from others who have lost pregnancies at similar gestations and in similar circumstances and therefore no way to identify if their outcomes and experiences are influenced by the way in which they lost their baby. It is also hugely disappointing that we note the omission of the many parents who have to travel abroad for termination every year having received part of their pre-natal and post-natal care in an Irish maternity unit. Hospital staff, the HSE and HIQA cannot change the law under which they operate but they do not need a legal mandate to improve the care that they offer to people who have to travel for their loss or to include them in the cohort of people surveyed about their loss.

The refusal to include just one specific type of pregnancy loss; termination for medical reasons in a perinatal bereavement survey is unacceptable and inexcusable. The stigma of termination for medical reasons, and the lack of understanding of the part it plays in perinatal bereavement should be challenged by the HSE and HIQA, not perpetuated. This decision to exclude them from a survey of their peers perpetuates their isolation, exclusion and stigma. We receive feedback from our support group and peer supported members every year that clearly spells out the ways in which the treatment they receive from their healthcare providers in maternity units and the community contributes to their grief and can either drastically improve or worsen their recovery.  This survey is a huge missed opportunity to meaningfully and positively impact the way in which these parents recover from pregnancy loss, while actively aiming to do just that for every other bereaved parent.

We took part in the process of preparing and planning for this survey in good faith and the expectation that the grieving parents who we represent would benefit from our participation. It is so disappointing that these families who exist in every community in our country continue to rely solely on one, small, completely volunteer organisation and continue to be ‘othered’, rejected and ignored by the state funded organisations that are mandated to care for them.

TFMR has long been a normal part of perinatal bereavement despite only recently being a legal option carried out in Ireland. The experiences our members have in Irish maternity members should matter to you. They should be as well cared for, as supported and as important to you as any other bereaved parents. To exclude them from this survey shows that that is not the case.

You can view the survey here

We will continue to advocate for all of our members to receive the best possible medical and community care during their devastating losses. It is with huge sorrow we recognise that you will not be doing the same.

On behalf of and with the full support of the Board of LMC Bereavement Support and TFMR Ireland.

Claire Cullen Delsol Communications officer 0871631497

Alison Lynch Co-Chair of LMC Bereavement Support

Jennifer Ryan Co-Chair of LMC Bereavement Support

Tracey Smith Trustee LMC Bereavement Support

Amy Walsh Trustee LMC Bereavement Support