Preconception Health, Education and Care: Making and celebrating progress
Jonathan Sher, Queen’s Nursing Institute Scotland, argues for the persuasive power of affirming the positive when trying to move the preconception health agenda forward.
You’ve got to accentuate the positive
Eliminate the negative
Latch on to the affirmative
Don’t mess with Mister In-Between
Ac-Cent-Tchu-Ate The Positive
(Song/Lyrics: Mercer & Arlen, 1950)
Women and men who want to conceive a child desire the same three outcomes: a safe pregnancy, a healthy baby and a positive parenthood. Helping people actually get what they already want is a wonderful starting point for efforts to improve preconception health, education and care.
The equally good news is that those three goals are attainable relatively quickly, simply and at low cost for most people most of the time. There is a robust, ever-growing, international evidence base about what can be done to improve pregnancy and birth outcomes (Shawe, et al., 2020; Hammarberg et al., 2020):
Promote health & wellbeing prior to pregnancy;
Prevent preventable risks & harm; and,
Prepare properly before the first (or the next) pregnancy.
As always in real life, preconception health initiatives exist in the context of complex and vexing crises - from climate change and poverty to a global pandemic and inequitable societies. Mitigating those crises is of paramount importance.
However, these longer-term battles are not a legitimate reason for inaction or neglect of what can, and must, be done in the here and now to improve pregnancy and birth outcomes. It is a case of both/and, not either/or, responses. After all, what happens (or fails to happen) prior to pregnancy can be the earliest - and often the most enduring - determinants of the lives and life chances of the next generation (Sher, 2016).
Heroes and heroism
Meaningful preconception health, education and care promises better health and wellbeing across generations. So, in a world of seemingly insurmountable challenges, why hasn’t this good news story been told more often and embraced more fully as a welcome ray of hope?
In part, this reflects a pervasive societal view of ‘heroes’ and ‘heroism’. Heart surgeons who perform triple bypass operations are life-saving heroes whose skills are applauded and who enjoy high status. Any beneficiary of their knowledge and talent would be first in the queue to praise their heroic actions.
But what about the community nurses, physiotherapists, dieticians, healthy food campaigners, exercise advocates/trainers and other professionals whose wonderful work has prevented thousands of our fellow citizens from ever needing a triple bypass operation? They receive far lower pay, have lower status and gain far less recognition for their contributions than heart surgeons.
When the cultural threshold for heroism is successfully resolving a major crisis – rather than taking earlier actions to keep that crisis from happening in the first place – then preconception health, education and care remain largely under the radar and at the back of the queue for policy priority and resource allocation.
Accentuating the positive
What can be done?
Given the reality of a robust evidence base for preconception health, education and care - and powerful examples of successful policies and actions – accentuating the positive in communications is likely to spark greater attention to, and support for, preconception health, education and care. Upbeat, affirmative messaging matters (Hastings & Domegan, 2017). Encouraging a sense of possibility and a sense of agency will make a constructive difference in how professionals, policymakers, organisations and, most of all, parents-to-be feel, think and behave (Grenville-Cleave et al., 2021).
There is reason for optimism. In Scotland, a major initiative to improve the health of all women has acknowledged the importance of the preconception and inter-conception periods (Scottish Government, 2021) and, in three key areas, considerable progress has been made.
Reasons for optimism
In 2018, the ‘Journal of Public Health’ published an article titled: ‘Failures in reproductive health policy: overcoming the consequences and cause of inaction’. My co-authors and I focused on three prevention issues in the context of Scotland and the UK (Sher et al., 2018):
a) Fortifying flour with vitamin B9 (folic acid) to avoid most Neural Tube Defects (NTD);
b) Preventing Fetal Alcohol Spectrum Disorders (FASD);
c) Risk reduction in relation to the teratogenic medication, valproate.
These are among the numerous concerns that are best acted upon during the months before conception. As noted in the article (ibid, 2018):
Each of these examples has a unique history, but they share three characteristics. First, international evidence favouring these public health actions is long-standing and rock-solid; second, they all speak to the rights, empowerment and wellbeing of women of childbearing potential (and to a lesser extent, prospective fathers); and third, the adverse impacts of inaction are much more frequent and more profound than acknowledged.
What has happened in Scotland and the UK since 2018 regarding these three prevention issues merits updating professionals and the public, celebration and encouragement to go further. Greater gains may result from highlighting successes instead of failures; progress instead of problems, and assets instead of deficits. Treating the proverbial glass as half-full doesn’t deny the empty half. However, it can counter feelings of futility and motivate all concerned to keep raising the level.
a) Fortifying flour with Vitamin B9
Mandating the fortification of bread and/or other staple foods with Vitamin B9 (folic acid) is a brilliant public health action. In fact, it makes the case for the value of preconception health, education and care for five reasons:
1. The neural tube - which become the brain, spinal cord and central nervous system - is completely formed (or malformed) by the end of the first month of pregnancy (Singh & Munakomi, 2021).
2. It was proven thirty years ago that the majority of Neural Tube Defects (NTD) can be prevented by taking more Vitamin B9 (folic acid) than is gained from even a healthy diet (Wald et al., 2020).
3. Blood folate levels among women are generally too low to prevent neural tubes defects (which cause miscarriages, stillbirths, infant mortality and such conditions as Spina Bifida – and which often prompt voluntary termination after pregnancy screening reveals an NTD) (Morris et al., 2021).
4. It takes weeks of adequate daily supplements of Vitamin B9 (folic acid) to gain the NTD prevention benefit. More than a decade of voluntary supplementation schemes have been only modestly effective while they have, unfortunately, increased inequalities since high socioeconomic status women are usually the ones taking supplements (Estevez-Ordonez et al., 2018; Cawley et al., 2018).
5. Adding Vitamin B9 to bread and other foods has been implemented successfully by more than 90 countries. Fortification is safe, simple, inexpensive, effective and promotes equity by reaching women across the socioeconomic spectrum (Food Fortification Initiative, 2021).
That is why the announcement by the UK Government in September 2021 that some types of flour would have Vitamin B9 added was widely applauded as a welcome step in the right direction (UK Department of Health and Social Care, 2021). Of course, the ‘devil is in the details’. This public health victory for prospective parents and the next generation of children will only truly be won when the right level of Vitamin B9 is added to the right foods to protect women of childbearing potential throughout these nations.
These are battles for another day. Right now, there is ample cause for celebration (QNIS,2021). Many Neural Tube Defects will be prevented thanks to this preconception policy action. How many, how quickly and how equitably will be determined by how well the forthcoming fortification policy is legislated and then implemented.
The Rubicon has now been crossed. None of the 90 countries mandating food fortification with folic acid have ever changed their minds and rescinded this preconception-focused public health measure. So too, there will be no U-turn in the UK away from this landmark decision.
b) Preventing Fetal Alcohol Spectrum Disorder (FASD)
Although suspected for centuries, research in France more than forty years ago revealed that alcohol is a powerful teratogenic agent (Brown et al., 2019). Decades of scientific studies across the globe have confirmed and expanded understanding of why and how alcohol can have pernicious impacts upon the fetus. It has now been proven that alcohol easily crosses the placenta and remains much longer in the baby’s brain and body than in the mother’s because a fetus cannot metabolise and eliminate alcohol as effectively and quickly as an adult (BMA Board of Science, 2016).
Drinking anytime during pregnancy carries a real risk of creating a life-long, life-limiting neurodevelopmental condition. It can directly result in impaired executive functioning, learning difficulties and behavioural problems as well as harming physical health. In turn, these primary consequences often cascade into secondary (but no less serious) adversities, including school failure, mental health concerns, over-representation in the criminal justice system, substance misuse, unemployment and lower life expectancy (McLachlan et al., 2020).
While the human costs are paramount, the financial costs of FASD are also staggering. Children affected by FASD have been referred to as ‘million dollar babies’. It is only because the costs of caring for them are widely distributed over time and across public services that the impact has not been sufficient to trigger a crisis response.
This situation would be dire even if fetal alcohol harm was a rare condition, but it is not. In fact, it is the most common neurodevelopmental condition in Scotland, the UK and internationally (Lange et al. 2017). The Scottish Government recently estimated that 172,000 children, young people and adults have been adversely affected by alcohol exposure in utero (out of a population of 5.5 million) (Education Scotland, 2021).
And yet, Fetal Alcohol Spectrum Disorder is largely unacknowledged, undiagnosed and unfunded. This is at least in part because the original research identified Fetal Alcohol Syndrome (FAS) as a condition that caused facial dysmorphologies and other visible physical problems. However, subsequent research has revealed that FAS affects only about 10% of people adversely affected by alcohol exposure in the womb. 90% of those impacted have invisible neurodevelopmental conditions that are now referred to under the umbrella term, Fetal Alcohol Spectrum Disorder (FASD).
Misunderstanding of the true extent of the consequences of alcohol exposure in utero has resulted in a pervasive blind-spot across the UK. While the placenta is not an effective barrier to alcohol, societal barriers have been highly effective in keeping FASD well hidden in the cultural, political and professional ‘long grass’. However, in the past few years, Scotland and the rest of the UK have started to acknowledge the extent of FASD. While policies, research and actions still lag behind other OECD countries, significant foundational work has been accomplished.
In 2019, the Scottish Intercollegiate Guidelines Network published the first national clinical guidance on FASD in the UK: ‘SIGN 156: Children and young people exposed prenatally to alcohol’. This excellent, detailed publication - plus an accompanying version written for parents, carers and families – borrows from international sources while providing a Scotland-specific context and signposting to helpful resources. It not only focuses on the identification, diagnosis and management of FASD, but also assesses the quality of the research underlying each recommendation.
This was followed in late 2020 by the Scottish Government’s launch of a broader eLearning resource for non-specialists that explores the myths surrounding FASD and has a section on prevention. It is accessible, free of charge to everyone visiting the NHS Education for Scotland website (QNIS, 2020).
FASD-specific services, groups and resources have now been created. These are modest in international terms, but they are meaningful in the Scottish and UK contexts. The first UK clinic for FASD, led by consultant neurodevelopmental psychiatrist, Dr Raja Mukherjee, is no longer the only service available. For instance, the Scottish Government has supported the Fetal Alcohol Advice & Support Team (FAAST) to offer advice nationally. It has also funded the Scottish branch of Adoption UK to operate the FASD Hub (helpline and information service for parents/carers). Community-based, parent-led FASD peer support groups are also increasing. At the UK level, the Department of Health & Social Care published its first FASD Health Needs Assessment in September 2021 and a UK version of Scotland’s SIGN 156 is under consideration.
Today, FASD is slowly, but steadily, being incorporated into a variety of health, education, social work and criminal justice programmes, policies, CPD offerings and action plans. This once invisible neurodevelopmental condition is finally coming into view (Plant, 2021). And the more attention it attracts, the greater the pressure will become to act: firstly, to prevent this preventable (and costly) harm to the next generation’s lives and life chances; and secondly, to diagnose and support the huge number of people already affected by FASD, who have long been misdiagnosed and inadequately helped (Aiton, 2021).
Prevention is the preconception priority in relation to FASD. Other countries have paved the way for Scotland and the UK to learn from, and emulate, their example in culturally and contextually appropriate ways (Beekmann, 2021). In particular, the Australian Government deserves high praise for investing $37 million recently in a multi-year FASD awareness and support initiative (Australian Department of Health, 2021), $27 million of which is for a prevention campaign led by a prominent charity (Foundation for Alcohol Research and Education (FARE), 2021).
The third example of a longstanding failure in reproductive health policy and practice, cited in the 2018 Journal of Public Health article, concerns the teratogenic drug, valproate (aka valproic acid or sodium valproate).
The risks in utero of both physical and neurodevelopmental harm have been documented for decades, but it was not until recently that the European Medicines Agency initiated its first-ever public hearing to examine the risks of valproate. The inquiry was led, pre-Brexit, by Dr June Raines - head of the UK Medicines and Health Products Regulatory Agency (MHRA) - and its findings and recommendations were widely promoted (European Medicines Agency, 2018).
Since then, the MHRA-led UK response has been robust and laudable. New regulations to discourage the frequent off-label uses of this medication have been issued. Public and professional information campaigns have been undertaken. The Valproate Pregnancy Prevention Programme aims to help women and their prescribers to initiate an effective, safe substitute for valproate before conception. (MHRA, 2021) This is crucial because valproate is a medication that should never be suddenly stopped. Instead, it needs to be gradually tapered-off pre-pregnancy. If weaned off valproate during pregnancy, then the fetus would be exposed to this teratogenic medication for months.
This UK-wide initiative received a large boost from the subsequent Independent Medicines and Medical Devices Review – headed by Baroness Cumberlege – and its 2020 report: ‘First Do No Harm’. Numerous public hearings were held to listen to the experiences and views of the women affected by any of the three concerns scrutinised, including valproate (Independent Medicines and Medical Devices Safety Review, 2020)
The media, political and professional attention generated by ‘First Do No Harm’ has strengthened the power of the MHRA’s on-going work, continued in part by a Valproate Stakeholders Network. This teratogenic medication has been lifted above the radar and into the consciousness of practitioners, patients and policymakers. It will not become a blind spot again.
Healthier Pregnancies, Better Lives
This issue of the IJBPE has been produced in collaboration with the Queen’s Nursing Institute Scotland (QNIS), an organisation founded in 1889 and still dedicated to championing nursing and midwifery in the community. Buoyed by the belief that the time is finally right, QNIS is now moving beyond occasional contributions to the advancement of preconception health, education and care. With the support of The National Lottery Community Fund (Scotland) and Cattanach (a philanthropic organisation focussed on early childhood), QNIS has launched the planning and development process for a new comprehensive initiative, ‘Healthier Pregnancies, Better Lives’.
This programme will identify and build upon the earliest opportunities to improve the health and wellbeing of women and their partners in order to improve the lives and life chances of their children. After all, the health and wellbeing of women at conception remains the best predictor of pregnancy and birth outcomes. Through this new programme of work, QNIS will encourage and support community nurses and midwives to identify opportunities to make a positive difference before a woman’s first or next pregnancy.
Latching on to the affirmative
Equally importantly, QNIS is sparking and coordinating a Scottish coalition of key organisations and individuals who will pursue activities resulting in ‘Healthier Pregnancies, Better Lives’ within their own spheres of influence. In turn, the aspiration is that this coalition will eventually evolve into a movement weaving preconception health education and care into the fabric of society.
Coupled with the 2021 launch of Scotland’s (and the UK’s) first Women’s Health Plan (Scottish Government, 2021) – which includes ‘pre-pregnancy’ recommendations – there is now a collective sense of hope about what can be accomplished in the months and years ahead. The ‘Healthier Pregnancies, Better Lives’ coalition partners are expected not only to reach their own goals, but also to complement, extend and aid the effective implementation of relevant governmental frameworks and action plans.
The cumulative impact is very promising. Hope flows from a commitment to ‘accentuate the positive’ and ‘latch on to the affirmative’ in moving toward making robust and meaningful preconception health, education and care a reality for every prospective mother and father.
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