NICE is developing a quality standard relating to FASD (Fetal Alcohol Spectrum Disorder). AIMS welcomes the development of this quality standard as we agree that it is important to address health issue of FASD, including via good practice around diagnosis and support for those affected. We are also keen to work constructively with other stakeholders to ensure that this issue is addressed effectively.
Two of the five proposed quality statements are related to the organisation of the maternity services, and AIMS is calling for these to be reconsidered, drawing on our knowledge about the maternity services and of women's experiences of using maternity services. We look forward to seeing a revised quality standard which reflects our concerns with the current draft.
NICE's consultation document can be found here.
AIMS Comment 1
We are concerned about the lack of evidence-base for this statement.It is controversial to suggest that maternity services should be advising all women to abstain from alcohol during pregnancy, and we cannot support this approach. The need for this recommendation is not supported by the current evidence base, and we are concerned that NICE is unable to support the quality statement via its usual careful consideration of available evidence, to include, for example, evidence about whether there are susceptibilities within some families. Also relevant is the discussion in our further comment below (comment 2) about the need to build trust in the relationship between service users and health care professionals, which depends vitally on honest information sharing.
The evidence-base, on which women can base their decisions, is weak. We need better evidence to inform women about the risks of alcohol during pregnancy so that they can make their own informed decisions: the blanket abstinence recommendation is unhelpful and risks undermining honest conversations between the pregnant woman and health care professionals.
AIMS Comment 2
If the maternity services wish to support pregnant women to reduce alcohol consumption, this is more likely -evidence of the recommendation permitting (see comment 1) -to be effective within a continuity of carer relationship and following the provision of easily accessible pre-conception guidance (to enable some women to address the issue of alcohol consumption before they become pregnant). It is also possible that women who want to address issues of alcohol consumption, who are provided with sources of support to help them to do so, are more likely to engage in this if they are not expected to disclose details of their current levels of consumption to the doctor or midwife: this suggests that there may be a contradiction between quality statements 1 and 2 which needs to be further examined.
Thus we are not sure that these quality standards will lead to the positive impact intended. To reduce the incidence of FASD, we suggest that a broader programme of change is necessary encompassing (a) action at the societal level (in the UK, we have a widespread acceptance of alcohol, with drinking cultures -including amongst young people -that need to be addressed for FASD to be significantly reduced; this is because no pregnant woman lives in a vacuum, but acts within their context); and (b) a wider focus on family alcohol consumption, including mothers and fathers, pre-conception and during pregnancy. In this way, a shift away from a maternal-centric paradigm presented in these Quality Standards is likely to improve the effectiveness of any programme. Discussion suggests that father’s preconception alcohol consumption, for example, may be a significant factor in FASD development.
AIMS Comment 3
We are concerned about the effectiveness of measures focussed on the pregnant woman and how this will impact on the quality of maternity care.
In developing these quality standards, it is important to respect the principles of informed decision-making, consent and confidentiality. Informed decision-making on the part of the pregnant woman is key. Before making a decision about disclosing personal information, women need to be informed about how this information will be used and have time to consider the possible implications of their disclosure, e.g. if the information might be used in a future safeguarding issue. Consent: It is unclear what the process is for women to understand how their data will be used and what they are consenting to (including about how the information will be used and who will have access to it). Confidentiality: There is a suggestion that information provision on the part of the pregnant woman would be mandatory, which is an unusual demand to make of healthcare service users. This seems to be contrary to the principle of building a relationship of trust and confidentiality between the woman and her health care provider.
AIMS Comment 4
In developing these quality standards, it is important to take into account the likely practicality, effectiveness and proportionality of the proposed information collection. We understand that the quality standards have an objective to accurately record the alcohol consumption of pregnant women, for the purposes of diagnosing FASD in the child. We would suggest that this objective requires mutual trust between service users and health care providers in order to be effective. We question whether the approach suggested in the quality standards achieves this objective, and indeed we are concerned that the approach suggested will work to destabilise a trusted relation.
AIMS Comment 5
Practicality of data collection: Maternity service antenatal appointments are, following the first appointment, very short appointments during which there are many tasks to be completed. We query how additional conversations related to alcohol consumption will be facilitated in this short appointment.
AIMS Comment 6
Effectiveness of data collection: We query how accurate the record of alcohol consumption will be. There has been much debate about the inaccuracy of self-reporting related to alcohol, whether due to misunderstandings of intake quantities or the stigma around revealing alcohol use (including within certain cultural and religious contexts). See also comment 2.
AIMS Comment 7
Proportionality of data: The proposal here is that information is collected during pregnancy for all women. We do not think that this represents a proportionate approach because this data collection may not be necessary at this stage for many families, and its collection risks doing harm to the relationship of trust needed between the mother and her doctor and midwife, as well as to the emotional and mental well-being of the pregnant woman.We would therefore question whether the universal approach suggested, with that timing, is likely to be effective and lead to data that is accurate or indeed always necessary. We feel that there is a further debate to be had around the best point to collect alcohol consumption records of pregnant women, and would suggest that information is better collected at the point of FASD diagnosis (where the birth mother is present) or at the point of ‘handing over’ a child if the child in question is transferred to the care system/is looked after. This would meet the objectives related to gathering information to support a diagnosis.
AIMS supports all maternity service users to navigate the system as it exists, and campaigns for a system which truly meets the needs of all. AIMS does not give medical advice, but instead we focus on helping women to find the information that they need to make informed decisions about what is right for them, and support them to have their decisions respected by their health care providers. The AIMS Helpline volunteers will be happy to provide further information and support. Please email email@example.com or ring 0300 365 0663.
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