The UK charity Antenatal Results and Choices (ARC) started out under a different name. Support after Termination for Fetal Abnormality (SATFA) was founded in 1988 by a group of bereaved parents and concerned health professionals who recognised the practical and emotional needs of women and their partners ending a pregnancy after a prenatal diagnosis were not being met (Kenyon, 1988). SATFA worked hard to raise awareness and improve care in this sensitive area. A decade on, the charity was dealing with all aspects of antenatal screening and diagnosis and needed to reflect this wider scope. Thus, ARC was founded in 1998 (ARC, 2020).
What ARC offers parents and families
No expectant parent can ever be fully prepared for the news that their baby is not developing as expected, and no-one can take away the difficulty of their situation. But the ARC helpline team has the capacity to ‘be’ with parents experiencing acute distress, which can help contain them. We at the charity see ourselves as complementing and extending the care parents receive from their healthcare team.
ARC's national helpline (10 am–5.30 pm Monday to Friday; 8 am–10 pm Tuesdays and Thursdays) is run by a professional team of four. They handle around 6 000 contacts a year by phone and email. These contacts include parents dealing with unexpected test results or difficult news from ultrasound scans, or couples struggling with an uncertain prognosis or facing the decision about the future of their wanted pregnancy. We also hear regularly from bereaved parents grappling with the complicated grief that can follow termination.
No-one can prepare for the news that their baby is not developing as expected, but the ARC helpline team supports families and complements the care from health professionals
The aim on the helpline is always to listen well, remain impartial and aid women and their partners in gathering all the information and support they need to proceed in a way that is right for them in their individual circumstances. The team does not offer medical advice, but has a good overview of current standards of care and where to signpost for expert guidance.
The service has been audited in 2012, 2015 and 2020, and ARC has received a consistent message that parents value the charity's independence. It is not connected to them emotionally or professionally, so they can be open and honest about their feelings and concerns. ARC provides a safe, confidential space for parents to offload their anxieties and explore possible outcomes at their own pace.
ARC has no investment in the ultimate decision parents make to continue or end a pregnancy after a diagnosis. It is they who will have to live with their decision, so the charity tries to help them ensure that it is as informed as possible and congruent with their values. ARC provides specialised ongoing bereavement support for those who end the pregnancy. Services include private online support forums, trained volunteer peer support and a range of supportive publications. ARC also provides emotional support to those who continue pregnancy, but is also able to refer them to those organisations better placed to offer appropriate help around specific conditions after the baby is born.
Prenatal diagnosis does not just affect the woman and her partner, but will have an impact on family and friends too. ARC often speaks to grandparents, worried both for their own children and potential grandchildren.
What ARC offers professionals
It has always been important to us at ARC to maintain a close and collaborative relationship with professionals in the field; it is the best way to promote and share best practice. ARC runs a well-established training programme in communication skills, delivering difficult news and supporting parent decision making. The charity is also fortunate to be involved with decision makers such as the NHS Fetal Anomaly Programme and England Clinical Reference Group for Specialised Women's Services. This means ARC is able to provide feedback on what it hears from parents and professionals, to help drive up standards of care.
ARC's confidential helpline is open to professionals too, as it is recognised that this is a challenging area of practice that can be demanding both professionally and personally (Rita et al, 2017).
ARC's work during COVID-19
Prenatal diagnosis does not stop during a pandemic, and restrictions because of COVID-19 have added an extra layer of distress. Some parents have needed extra support after having a termination during lockdown restrictions. It has been harder for them to access support from family and friends, and the intensity for a bereaved couple being forced to spend so much time together at home has put a strain on the strongest relationships.
ARC has managed to sustain its support services throughout the pandemic and we have noticed that it has been more difficult for pregnant women and their partners to cope with uncertainty. Unfortunately, uncertainty is common when it comes to antenatal screening and its consequences. Whatever the diagnosis, it is rarely possible to give absolute clarity on the long-term outlook for a baby after birth. At a time when the whole world is unsettled, this can be especially hard for expectant parents to tolerate.