In June this year, the charity Tommy's (2021a) was recognised with an award from the Chartered Institute of Public Relations (2022) for their 2021 ‘Miscarriage Matters’ campaign, a campaign that put miscarriage firmly on the UK government's agenda for the first time.
Miscarriage Matters was created to share new research published in The Lancet by the Tommy's National Centre for Miscarriage Research with the public and to show the government exactly what needs to be done to change the story for the hundreds of thousands of families who experience miscarriage every year (Tommy's, 2022a). The goal was to improve care and support and save thousands of babies' lives.
It is conservatively estimated that there are 250 000 miscarriages in the UK every year. One in five women will experience the heartbreak of miscarriage at least once (Tommy's, 2022a). This is only an estimate because miscarriages occurring at any time during the first 24 weeks of pregnancy are not officially recorded (NHS, 2022a). There is no central record and no certification for parents to mark a loss. Without knowing the full scale of the problem, it is hidden, and research and treatment are not prioritised as a result.
It is also standard practice that families must experience recurrent miscarriage, usually defined as three miscarriages in a row with the same partner, before they qualify for support and care. Even then, the care they receive often varies greatly and can depend on where they live (The Lancet, 2021a). Tommy's sees it as their responsibility to change this and transform miscarriage care in the UK.
In April 2021, 5 years of research by leading experts from the National Centre for Miscarriage Research laid bare the devastating impact of miscarriage in a special series of three articles published in The Lancet (2021a), the most prestigious medical journal in the world. This landmark series was, astonishingly, the first series focused on miscarriage in the journal's 200-year history.
Papers led by Professors Siobhan Quenby, Arri Coomarasamy and colleagues ran alongside an editorial calling for worldwide care reform, setting out the argument at the heart of Tommy's work. As the editorial explained, ‘for too long miscarriage has been minimised and often dismissed. The lack of medical progress should be shocking. Instead, there is a pervasive acceptance’ (The Lancet, 2021b).
Tommy's could have simply written a press release summarising The Lancet findings. It would have likely been covered by national newspapers and broadcasters, then faded from the headlines as breaking healthcare stories tend to do. After all, 2021 was a pretty busy year for health reporters.
What developed instead was a powerful movement that is still very much in action more than a year later. As Tommy's continues to influence MPs and the health minister, backed by hundreds of thousands of supporters across the country, there is good reason to believe the campaign will now achieve its objective to introduce a record of UK miscarriages and standardise patient care for all parents in the UK.
Tommy's has never accepted that miscarriage is ‘just one of those things’ and does not accept that the low priority for which it has been ranked by researchers and government for so long should continue. The Lancet research thoroughly debunked the long-held myth that miscarriage is an unavoidable part of a pregnancy journey.
Studies showed that black women are at 40% increased risk compared to white women and miscarriage had a much greater impact on mental health than previously considered (Tommy's, 2021a). It can double the risk of depression and quadruple the risk of suicide (Tommy's, 2021a). Additionally, recurrent miscarriage is linked to subsequent pregnancy complications, such as stillbirth and preterm birth, with women who have had three miscarriages or more being six times more likely to suffer from blood clots in later life (Tommy's, 2021a).
The findings posed a serious challenge to the current UK policy of waiting until a woman has gone through three miscarriages in a row before any support, tests or treatment are offered (NHS, 2022b). The researchers then made evidence-based recommendations for how to revolutionise miscarriage care, including standardised tests and treatments for all women and people giving birth in the UK, to reduce the healthcare postcode lottery.
Launching just ahead of The Lancet publication, Tommy's (2021a) Miscarriage Matters petition called on the UK government to improve miscarriage care. It called for an end to the current system, instead suggesting a graded model of care where support should be offered after every miscarriage, with care increasing after each subsequent miscarriage. It also called for personalised care sooner for women at higher risk, according to their risk factors from the very start of pregnancy.
This campaign, backed by an enormous amount of media attention and social media traction, showed promising signs of having worked, and worked quickly. Olivia Blake (MP) delivered the petition (then on 175 000 signatures) to parliament in June 2021 and raised The Lancet research findings with then health minister, Nadine Dorries (MP). The minister accepted those findings and recommendations: in future, families would not have to endure three consecutive miscarriages before they can access care.
The Royal College of Obstetricians and Gynaecologists (2021) updated their guidelines to include recommendations to encourage the NHS to adopt the Tommy's ‘graded model of care’ so parents can get support after every loss and earlier access to specialist tests and treatments. Similarly, the National Institute for Health and Care Excellence changed their progesterone treatment guidelines for women who have had at least one miscarriage and who are experiencing bleeding in early pregnancy (Tommy's, 2021b). It is estimated that this alone will save around 8500 babies' lives every year (Coomarasamy et al, 2020).
However, Nadine Dorries was moved to another position in government and no firm commitment to change the status quo emerged. A year on, with 253 448 people now having signed the petition, the situation remains the same: a person has to experience three miscarriages in a row before they can access any support, access to miscarriage care can vary depending on where a person lives and miscarriages are not recorded. When parents say ‘having a third miscarriage almost felt like a relief, as we knew we'd then be able to get help’, it is clear something has to change.
With the publication of the government's women's health strategy for England expected imminently (Department of Health and Social Care, 2022), Tommy's called on their supporters this spring to write to their MPs, asking them to prioritise miscarriage care. Within a month, nearly 5000 people had done so, prompting a positive response from representatives and an invite to parliament for a roundtable meeting (Tommy's, 2022b).
The current system is not working, and families are suffering repeated physical and mental devastation as a result. If the government in England intends to make progress in addressing the health conditions and inequalities affecting women, it is vital that miscarriage is included in the strategy as a key area where more support is needed, and Tommy's recommendations should be introduced for all women and pregnant people across the UK.