The Pregnancy Loss Review – what does it mean for general practice?

Nada Khan is an Exeter-based NIHR Academic Clinical Fellow in general practice and GPST4/registrar, and an Associate Editor at the BJGP. She is on Twitter: @nadafkhan

We don’t do well enough for women experiencing pregnancy loss, a common and devastating experience which is a significant life event for many people.  The Independent Pregnancy Loss Review, published in July 2023, highlights the stories of people who are ‘traumatised by their care experience and feel angry and dismayed at the total lack of compassion and support afforded to them during such a distressing time’.¹  This review offers recommendations to improve care for women and their families experiencing pregnancy loss, and includes specific advice for primary care.  What can we do better in general practice to support women with pregnancy loss?

Terminology

Throughout the review, and in this article, I use the term pregnancy loss, instead of miscarriage, a term which some women feel does not describe their lived experience of losing a baby, and suggests that somehow, the woman’s body has ‘failed’ to carry the baby.²  Terminology around pregnancy loss can be emotive.  Some parents will refer to the loss as a miscarriage, or talk about their baby, some will talk about the fetus, but in practice, we need to follow the lead of parents and reflect their choice of language.  If practitioners are in any doubt about what and how to say it, the Pregnancy Loss Review suggests asking parents which language is preferred.

Diagnosis

Diagnostic pathways for pregnancy loss are not straightforward for women or clinicians to navigate, especially as care provision varies widely across the country.  Early pregnancy assessment units (EPAUs) are specialised units set up for women with complications in the first trimester of pregnancy.  The Pregnancy Loss Review looked at all EPAUs in England, and found a wide variation in opening times, referral gestation, and referral processes.  Some EPAUs only accepted women from six weeks gestation, while others had no early cut-off, accepting women from conception to 14 to 20 weeks gestation.  Where EPAUs do not accept referrals under a specific gestational age, women are often managed in primary care and again with a high variation in care and use of biochemical markers such as serial urine pregnancy tests and serum bHCGs.  This is supported to an extent in current NICE guidelines suggest that if a woman is less than six weeks pregnant and bleeding, to consider use of ‘expectant management’.  In terms of how women access EPAUs, most required a referral from a GP, A&E clinician or another health professional, with an appointment-only attendance policy.  A few EPAUs allowed patient self-referral, or self-referral if the woman had a history of recurrent, molar or ectopic pregnancy, and others provided a walk-in service.  EPAU service provision, unfortunately, seems to be a bit of a postcode lottery.  Because practice varies so widely, the Pregnancy Loss Review suggests that women are being ‘bounced’ between GPs, A&E, 111 and gynaecology services.  In an attempt to try and standardise to best practice, the review suggests that women should be able to self-refer to an EPAU with pain or bleeding during pregnancy regardless of gestation.

Variation in opening times also act as a barrier to women trying to access early pregnancy services.  A qualitative study of women’s experiences of using EPAUs highlighted that difficulty obtaining appointments, availability of appointments and opening hours were the most commonly raised barriers.  Women wanted to see EPAUs open at the weekend to allow flexibility around work and childcare.³  NICE already recommends that early pregnancy assessment services should be open seven days a week.  Most EPAUs are already falling below these recommended guidelines, so is a 24/7 EPAU offer a practical ask for every Trust?  And in terms of how services are delivered, some women find co-location of EPAUs alongside maternity and gynaecology units distressing.³  The Oxford EPAU provides a model of the good practice recommended in the review in terms of location and referrals – the unit is located in the community, and allows self-referral for all women less than 16 weeks gestation.⁴  In this EPAUI, GPs made only 20% of referrals with 59% self-referrals from patients.  For EPAUs wanting to redevelop their services, this model might be worth a close look, and might change the traditional route of ‘GP referral’ to an appointment-only service. 

After the pregnancy loss

The Pregnancy Loss Review suggests several touchpoints where general practice can act to support women and their partners after a pregnancy loss.  The first recommendation is a simple one, that GPs should email, or post a letter of support to individuals experiencing a pregnancy loss.  This letter serves two purposes, firstly to acknowledge and offer condolences for the pregnancy loss, and to secondly to signpost to local and national support organisations.  This recommendation can easily be incorporated into standard practice, and the review includes letter templates that can be downloaded and used by practices.

Why is this important?  Many bereaved parents feel unable to absorb verbal information or support immediately following a loss, so having some written information to hand can be of value.¹  This letter can also include an offer for the woman and her partner to come in for an appointment to discuss aspects of their physical and mental health following a pregnancy loss.  Some women might need pain relief or anti-emetics following a pregnancy loss, but it’s not just physical health that matters here.  A prospective cohort study in London found that women experience high rates of anxiety, depression and posttraumatic stress following an early pregnancy loss.⁵  The review suggests that a post-pregnancy loss appointment in general practice should be a ‘person-centred consultation’ as an opportunity to discuss any unmet needs.  This is reflected in research that suggests that women wanted their pregnancy loss to be treated like a ‘real’ pregnancy, with someone checking in on their physical and mental health, and offering support, just like a health visitor might after the birth of a baby, to prevent women ‘falling through the net’ at a difficult time in their lives.⁶ And finally, the review suggests that psychological support for pre-24-week pregnancy loss should focus on both parents, acknowledging the mental wellbeing of the bereaved couple or family.

Longer-term care

Some women will experience more than one pregnancy loss.  The definition of ‘recurrent miscarriage’, like so much else of pregnancy loss care, is variable, and some services define it as two, or three pregnancy losses, with some organisations limiting the definition only to consecutive losses.  The Royal College of Obstetrics and Gynaecology (RCOG) has recently updated its definition of recurrent miscarriage to three losses at any stage and has dropped the requirement for these to be consecutive.⁷  The review suggests that after two pregnancy losses women should be offered an appointment in primary care for blood tests including a full blood count, thyroid function tests, and any other ‘necessary’ investigations.  The review also suggests that following three losses (which do not need to be consecutive), GPs should refer women to a consultant-led appointment at a recurrent miscarriage centre.  However, the RCOG guideline suggests that there is scope for women to be referred to recurrent miscarriage services after two losses if there is clinical suspicion of an underlying cause, or amongst women in their late 30s or older.⁷

Women who get pregnant again after a pregnancy loss have a higher risk of experiencing pregnancy-related psychological distress, pregnancy-specific anxiety, and depression.  There is very little evidence about what support should be offered to women in subsequent pregnancies following a miscarriage.  A recent ‘empty’ systematic review found no randomised controlled trials looking specifically at looking at interventions to reduce stress in pregnant women with a history of miscarriage.⁸  It’s worth being aware of previous pregnancy losses amongst a patient list, as women or their partners may present to general practice needing more support through subsequent pregnancies.  This links to one of the review recommendations, which is the creation of an NHS-wide flag system in the clinical records of anyone who has experienced a pre-24-week pregnancy loss.

Final thoughts

Pregnancy loss is something that has affected many of us personally and through our clinical work.  In current practice, when a baby dies before 24 weeks, the existing pregnancy care pathway disintegrates, with wide variation in care across NHS trusts.  And with variation comes examples of good care, alongside examples of inadequate care.  This review has provided an opportunity to reflect on how pregnancy loss care can be improved and standardised across the NHS and general practice.  Women and their families deserve a minimum level of care, with compassion, at a difficult time, and it’s worth keeping that at the forefront of our minds when we deal with pregnancy loss in practice.

References

1. Clark-Coates ZC, S. The Independent Pregnancy Loss Review – Care and support when baby loss occurs before 24 weeks gestation. Department of Health and Social Care; 2023.
2. Smith LK, Dickens J, Bender Atik R, Bevan C, Fisher J, Hinton L. Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study. BJOG. 2020;127(7):868-74.
3. Hall JA, Silverio SA, Barrett G, Memtsa M, Goodhart V, Bender-Atik R, et al. Women’s experiences of early pregnancy assessment unit services: a qualitative investigation. BJOG. 2021;128(13):2116-25.
4. Cox R, Khalid S, Brierly G, Forsyth A, McNamara R, Heppell V, et al. Implementing a community model of early pregnancy care. BMC Health Serv Res. 2020;20(1):664.
5. Farren J, Jalmbrant M, Falconieri N, Mitchell-Jones N, Bobdiwala S, Al-Memar M, et al. Posttraumatic stress, anxiety and depression following miscarriage and ectopic pregnancy: a multicenter, prospective, cohort study. Am J Obstet Gynecol. 2020;222(4):367 e1- e22.
6. Silverio SA, Memtsa M, Barrett G, Goodhart V, Stephenson J, Jurkovic D, et al. Emotional experiences of women who access early pregnancy assessment units: a qualitative investigation. J Psychosom Obstet Gynaecol. 2022;43(4):574-84.
7. Regan L, Rai R, Saravelos S, Li TC, Royal College of O, Gynaecologists. Recurrent MiscarriageGreen-top Guideline No. 17. BJOG. 2023.
8. San Lazaro Campillo I, Meaney S, McNamara K, O’Donoghue K. Psychological and support interventions to reduce levels of stress, anxiety or depression on women’s subsequent pregnancy with a history of miscarriage: an empty systematic review. BMJ Open. 2017;7(9):e017802.

Featured photo by Ignacio Campo on Unsplash