A view from India: Human Rights in Childbirth

Today is Human Rights Day 2016. Every year on the 10 December we commemorate the day on which, in 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights. So on this day, when we think about how we can stand up for human rights both here in the UK, and all over the world, we are sharing a guest blog post from Lina Duncan, a midwife (@MumbaiMidwife), who has written about her experience of childbirth in India…

Trigger warning – this piece discusses a stillbirth

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I have lived and worked in urban India for nine years and during that time I have found that midwives are missing from the system. I have witnessed how hospital policies, mixed with religious or family tradition, harm women and their babies.

I have heard and read hundreds of stories about women in India who have been pressured into potentially unnecessary interventions with inaccurate, fear-mongering information. This breaks women. It damages them before they even begin to birth and care for their babies. Most women do not speak of these things because they are told that a healthy mother and baby is all that matters.

I have seen and heard of many tragic situations of pregnancy loss or stillbirth where the mother was not told the truth. In each case, the mother was told her baby was in the NICU. She was lied to and denied the right to meet her baby, to make memories, to grieve, to hold her baby. Mothers are too often then silenced in their grief.

I do not believe that a healthy mother and a healthy baby are all that matters. I believe that the truth also matters. Facts, and language, are vital, so that women have all the information they need to make informed decisions. This is especially the case when a care provider has to give difficult, or potentially devastating news.

Truth + Kindness + Compassion = (usually) Satisfaction and Comfort

Half-truths + Lies + Fear = Broken Trust, Fear and Trauma

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I have a friend. She looks a little wild, maybe that’s why I liked her from the start. She often has a vacant look in her eyes. Frequently, she adjusts her clothes and shows me bruises from her alcoholic husband.

She doesn’t know her birthday, nor her age. She looked about 22 when I first knew her, pregnant with her first son who was born in a temporary shelter where she was living on a disused railway platform.

Fast forward a couple of years. I have not seen her for months. Her chaotic life is mostly about daily survival. She feeds her drunk husband first, of course. Then, her son, and then, her pregnant self. She has not had any antenatal check-ups. I persuade her to go with me to the government hospital, with son in tow because she is afraid to leave him with his father.

I show her what to do and entertain her lovely unruly son who is filthy. Everyone stares at me, and her, and it’s awkward and tedious. It takes about seven hours to get completely registered. She is prescribed vitamins, calcium, protein powder. I get her a few of the important ones and open them so they can’t be sold for liquor.

I don’t see her again for months and I worry.

One day she rocks up and calls my name. She is 39 weeks pregnant. She has had no antenatal care for 30 weeks. She does not want to go back to hospital but her husband thinks it’s a good idea. I go with her. The son stays at ‘home’.

The hospital wants to see a sonogram. The machine is broken. We have to pay 400 rupees (£4) for a private one. She has 10 rupees only. I pay. It takes forever.

I’m ‘not allowed’ in with her. Then the curtains are drawn back and I’m invited in. I know it’s not good news. ‘No heartbeat and only part of the brain,’ says the sonographer, to me. My heart sinks. I ask him to tell my friend as my Hindi is not good enough. He tells her and she smiles and says, ‘let’s go get lunch’. She has not understood.

We get food and find her husband, who is drunk, and her 3-year-old son, who has bloody knees and chin from playing alone in a building site. She is angry. I call my consultant doctor friend who works in a government teaching hospital. He invites us to go there immediately.

Another sonogram. Heavily pregnant woman with confirmed anencephalic baby. Drunk husband. Three-year-old doing somersaults all around the hospital wearing his father’s t-shirt and nothing else. We are a laughing stock and I am requested to stay and admit my friend for induction and then remove the husband and son.

She is disturbed that her son is alone with dad and they are not ‘allowing’ her out of hospital. The hospital requests that she fasts and start induction at 5am the following morning. I ask several times, politely, if I may accompany her but it is not allowed. Baby is breech and still alive. I have had lots of conversations with her about what to expect. It hasn’t sunk in. She either doesn’t understand or doesn’t want to.

That night, I tell her I will come and I will be outside the ward until she gives birth and they let me see her. I tell my friend that when she feels alone, she can know I am just on the other side of the wall. This breaks my heart. I am a midwife.

She has to go into the labour ward alone.

A colleague and I sit on the floor outside the labour room for 19 hours. Being a doula through a wall is very hard, especially knowing what she is about to face. No one should have to labour and birth without a companion.

Around 1am we are called into a little room to look at her little girl who has been born dead. I ask to take a picture for my friend. They assure me that she will be shown her baby but don’t let me in to be with her. I take pictures on my phone. They are lovely doctors but I am so angry.

At 4am they let me in to see her and ask me to buy her tea and food. It had been about 30 hours since she has eaten.

It is easy to find her, sitting up in bed with a big grin, announcing she is starving and asking where her food is. I ask her if she has seen her baby and she says, ‘not yet’. I ask her if she wants to see my photos and she says yes. I tell her that her baby was not born alive, that she was a girl, that her heart had stopped beating before she was born. I tell her the truth. She doesn’t ‘hear’ it. She smiles, asks me to come back in the morning and goes into a deep sleep.

In the early hours of the morning my phone rings. Sobs, deep sobs and demands. ‘Come now’, she says. ‘They have killed my baby,’ she says. My friend is distraught in a room full of mothers with their babies.

The day she is discharged I go to bring her home. She’s a darling and so feisty. She laughs and jokes until we walk arm in arm out of the ward. Then her body begins to shake. She says, ‘I came here to have a baby and I’m leaving with empty arms’. I have tears running down my face as well and passers-by gave us kind looks.

My colleagues and I make many visits over the following days and weeks. The family like to see the picture on my phone.

My friend has since had another baby. Her husband sold her when she was only 2 weeks old. This is one woman, one story and she represents many that live in a silent story of abuse and disrespect.

Many of us are longing for the Human Rights in Childbirth conference to be held in Mumbai, February 2017. We hope to hear many women’s stories, hear from researchers, and talk about how a midwifery model of care can be introduced in India. Do follow the conference, and join in the conversation. #breakthesilence

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Maternity Care Failing Some Disabled Women

Research published today (15/09/16) by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.

A survey of women with physical or sensory impairment or long term health conditions highlighted how  – despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”,  while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.

Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”

Speaking in advance of the publication of her book Why Human Rights in Childbirth Matter and the Birthrights #newchapter campaign linked to the launch, Rebecca Schiller, chief executive of Birthrights said, “this interim report suggests that there are significant human rights issues at stake for disabled pregnant women in the UK and Ireland. More than a quarter of women we surveyed felt that their rights were either poorly or very poorly respected. This is unacceptable and we will be working hard to address this over the coming years.

After Birthrights’ dignity in childbirth survey (2013) we became concerned that the needs of disabled women in the system were not being met. Though it’s heartening to see how overall most women were satisfied with their care and hear some positive stories of excellent practice there is clearly progress to be made. The women surveyed asked overwhelmingly to be listened to. It is crucial to listen to and trust women to ensure the system is genuinely meeting their requirements and that they are at the heart of decisions about their maternity care. The Equality Act 2010 places a duty on the public sector to provide services that meet the diverse needs of those who use them yet participants indicated worrying lack of attention to accessibility of maternity services and facilities for women with a range of disabilities.

The survey is indicative of a wider problem around women’s rights in childbirth that can impact on all women and often most forcefully on the most vulnerable . This month Birthrights is launching a campaign for a #newchapter in pregnancy and childbirth to ensure safe, quality, respectful care is available to all women. Pregnancy and childbirth are a vulnerable time and the physical and emotional impact on women and their babies of a negative journey through pregnancy and childbirth can be severe.”

Professor Vanora Hundley of Bournemouth University added, “while this is a small survey the findings echo the recommendations of the National Maternity Review published earlier this year, which highlighted the importance of personalised, woman-centred care with continuity of carer. It is clear that these are important considerations for all women, but particularly for those women who have a disability.”

Read the full interim report here. We expected the full report to be released in January 2017 when the qualitative research is completed. 

Human dignity after the EU referendum

In the volatile political, economic and social climate of post-referendum UK many of us are anxious and uncertain about the future. As a charity Birthrights did not take a position on the referendum and it would be wrong for us to do so now.

What is clear to me today is that we are presented with a range of opportunities at a challenging time. For some these are opportunities for division, discrimination, violence, extremism and hate. As an organisation founded on respect for basic human dignity, we deplore those who have exploited these opportunities and the acts of xenophobia, racism and violence we have seen over recent days. The murder of women’s rights champion Jo Cox MP is a tragic testament to the consequences of allowing these divisions to widen.

But this isn’t all that lies within reach. Whatever our beliefs (and however the consequences of last week’s vote unfold) there is now a chance to reinforce and promote another set of values: respect, dignity, equality, justice and fairness. The values of the human rights movement.

The need for an understanding of our human rights framework has never been greater. As we cast about for an anchor in this storm we can hold on to the legal protection of our rights as individuals and the specific provisions for vulnerable groups. These protections exists in UK law (particularly in the Human Rights Act 1998) at a European level (through the European Convention on Human Rights which is not directly threatened by our leaving the EU, contingent as it is on our membership of the Council of Europe) and at an international level.

The values that underpin the human rights movement and the legal scaffolding that gives them teeth are vital now more than ever. Yesterday the United Nations expressed “serious concern” about the impact of UK’s pre-existing austerity policies on the most marginalised and disadvantaged. As we face the prospect of further economic disruption and begin to imagine how this could affect vulnerable groups, it is important to know we are not in a vacuum. Our government has key human rights obligations and it must fulfil them.

With this in mind Birthrights will continue to defend the human rights of all childbearing women, with a particular focus on those vulnerable groups who need us most. Whatever the impact of the referendum on the NHS, on midwives, doctors or on the vulnerable migrant women whose risk of maternal death or stillbirth is so high, we will continue to advise women and families, champion their rights, inspire and train their caregivers and use the power of the law to protect them.

Pregnancy and childbirth are an intensely vulnerable time for an individual. The way they are treated during birth affects them at a time in their lives when their identities as mothers are being forged and when they are developing their relationship with the next generation. The long-term physical health of women and babies is at stake in the care they are given and women’s fundamental rights to human dignity and autonomy can be profoundly affected by their experience of maternity care.

Human dignity matters in the post-referendum UK. It should be the principle we live by and the basis of the world we aspire to live in. The safety, equality, respect and dignity of each woman during pregnancy and birth will always be a strong foundation for that aspiration.

Rebecca Schiller, CEO, Birthrights

Birthrights needs your support today.

Maternity experience of women with physical disabilities

Birthrights are excited to be taking part in a joint research project with Bournemouth University looking at disabled women’s experiences in maternity care. The survey below is open now (deadline extended from 3rd June). If you are a mum with a physical disability, please fill in the survey. Otherwise please share the link. The more women we can reach the better!

Disability survey

This is an area that we want to work more on and are planning some qualitative research with Bournemouth University in the future. The survey results will be shared widely. We will also be using them to inform our training and resources.

With thanks to the Matrix Causes Fund for part-funding this project.

NHS charges threaten the health of pregnant migrants

A new report released this week by Doctors of the World has revealed the threat to the health of pregnant migrant women in the UK posed by NHS charging policies. The report found that two-thirds of pregnant users of the charity’s drop-in clinic in east London, who are mostly undocumented migrants or asylum seekers, had not received antenatal care until their second trimester. Half had no care for 20 weeks or longer. pregnant-migrant-NHS-chargesNearly a third of women in the report were billed for their maternity care, one as much as £6,000.

‘These findings indicate an unacceptable inequality in our health system,’ Lucy Jones, an author of the study, says. ‘We must continue to improve access to healthcare for all mothers regardless of their wealth or immigration status.’ The average time the women in the report had been in the UK before becoming pregnant was longer than 5 years, debunking the myth of ‘health tourists’.

Maternity care in the UK is classified as ‘immediately necessary’ by the Department of Health and cannot be denied to any woman regardless of her means to pay for care. However, charges are imposed on those who are not ‘ordinarily resident’ in the UK and hospitals often pursue unpaid fees by means of debt collection. As the report states, NHS charges often deter vulnerable women from seeking care in pregnancy and can lead to undiagnosed health conditions and serious childbirth complications for woman and baby. One of the women in the report lost her premature baby after she did not access maternity care for 7 months.

In the past year, Birthrights has been receiving increasing numbers of enquiries from women who have been charged for the care. In many of these cases the charges have been levied unlawfully and contrary to government guidance. It appears that the funding crisis in the NHS and the focus on so-called ‘health tourism’ is leading to unjustified and oppressive charging decisions by NHS Trusts.

Our factsheet on foreign nationals and maternity care explains the legal position. Further information is also available via Maternity Action.

For further information or advice on NHS charges, please contact us: info@birthrights.org.uk.

 

 

 

Birthrights joins nearly 120,000 voices calling for buffer zones around abortion clinics

Birthrights co-chair Rebecca Schiller will join Erika GarrettCaroline Lucas MPDr Clare Gerada (GP and past Chair of Royal College of GPs), representatives from the British Humanists Association, Brook, and Reclaim Rossyln Road residents association to deliver this change.org petition to 10 Downing Street at 2pm on Wednesday 4 March.
 
The petition was started by Erika Garrett after seeing video footage of a pregnant woman confronting anti-abortion protesters and has been signed by nearly 120,000 people as well as supported by many key organisations such as Mumsnet, RCOG and RCM. 
 
Rebecca Schiller says, “It is unacceptable that vulnerable women accessing a vital service should feel intimidated and unsafe. Protest is important, but we must differentiate between protest and harassment. Worryingly harassment activity outside clinics is on the rise. Legislation that allows for protest but defines the boundaries between a legitimate expression of opinion and the aggressive filming, photographing and confrontation of women at an often-emotional time is vital. Birthrights is proud to lend our support to this petition and bpas’ Back Off campaign. “
 
 
ENDS
For more information please email press@birthrights.org.uk or call 07793084945.

Birthrights Comments on Sex-Selection Abortion Amendment

Press Release: 19 February 2015

The human rights in childbirth charity Birthrights has serious concerns about amendments to the Serious Crimes bill that could make sex-selection abortion a crime.

If passed the amendment to the Serious Crimes Bill (which MPs are due to vote on on Monday 23 February) could lead to a woman who has been pressurised in to an unwanted abortion being given a prison sentence. Moreover, it may deter midwives and doctors from giving vital individual counselling and support to women around these issues for fears they themselves may be charged with a crime.

Rebecca Schiller, co-chair of Birthrights says, “Attempting to tackle the complex social and cultural issues at the root of gender bias by criminalising vulnerable women is damaging to us all. Once again it punishes women for broader issues while pretending to protect them. It is right that we should tackle gender discrimination in this country but this amendment would do nothing to address the underlying issues in communities who may put pressure on women to have an abortion based on gender. Women need to be free to make decisions about their reproductive futures without fear of criminal sanctions. I fear that, were this amendment to be passed, it could be a step to encroaching on all women’s rights to abortion.”

“Existing legislation and guidance is sufficient. A 2012 undercover investigation found no doctors willing to perform abortions solely based on gender and Department of Health guidance is already clear that abortion based solely on gender is not permitted. This amendment adds nothing to protect women, but would prevent those who have concerns about gender-specific foetal abnormalities from accessing abortion. Women in South Asian communities are also being profiled by this amendment and are likely to face difficulty accessing abortion for any reason should it be passed.”

ENDS

Notes for EditorsBPAS briefing on the Serious Crime Bill Amendment: http://www.bpas.org/js/filemanager/files/bpas_sexselective_abortion_briefing.pdf

Rebecca Schiller’s book All That Matters: Women’s Rights in Childbirth is published by the Guardian’s e-imprint as part of the Guardian Shorts series. Ebook: £1.99, with 10% profits going to Birthrights.
epub ISBN: 978-1-78356-106-3
mobi ISBN: 978-1-78356-107-0Available at: guardianshorts.com, Kindle Store and all e-readers from Friday 20 February.

Birthrights Condemns Guilty Verdict in Purvi Patel Case

Press Release 4 February 2015

Women’s charity condemns guilty verdict as Indiana woman is charged with ‘feticide’ and child neglect.

The jury in a landmark case in Indiana has found Purvi Patel guilty of two contradictory charges of ‘feticide’ and child neglect. Despite widespread condemnation of the case by legal experts, health organisations and human rights activists, Patel faces up to 70 years in prison after giving birth to a stillborn baby.
 
Rebecca Schiller, co-chair of Birthrights (the UK-based human rights in childbirth charity), said:
 
“This is the second case of Indiana’s feticide laws being used against the vulnerable pregnant women they theoretically seek to protect. It is a worrying demonstration of what happens when the outcome of individual pregnancies is made political and subject to criminal sanctions. In addition, women in Indiana (and a rising number of US states) struggle to access free, safe abortion and are forced to see ultrasound images of their foetus before an abortion will be performed.” 
 
“The health and wellbeing of women and babies is being jeopardised by attempts to undermine women’s rights to access abortion, make decisions about their pregnancies and the way they wish to give birth. Despite all major US health organisations opposing criminalising pregnant women for the outcomes of their pregnancies, an epidemic of strategic prosecutions is the reality for women in America. Women from ethnic minorities and those at the lowest end of the socio-economic spectrum are most frequently targeted in these cases.”
 
“It is essential that women feel able to access unbiased support services and antenatal care without fear of a prison sentence. Legal systems should assert that women need to be trusted to make decisions about their pregnancies and draconian restrictions on abortions only serve to penalise the most vulnerable women. 
 
“We need to remain vigilant about attempts to undermine women’s reproductive rights in the UK, while raising awareness of the hostile climate in the USA and supporting those American advocates seeking to protect women from these harmful laws.”

For more information please contact press@birthrights.org.uk and 07793084945.

 

Court of Appeal rules that drinking in pregnancy is not a crime

The Court of Appeal has ruled that the mother of a girl born with Foetal Alcohol Syndrome did not commit a crime under the Offences Against the Person Act 1861 by drinking during pregnancy.  A council in the North West of England had hoped to prove that a crime had been committed in order to claim criminal injuries compensation for the child.

The Court stated: “the role of the state in these circumstances should be to provide care and support for the child who has suffered harm to the extent that this is necessary. It should not be to pay compensation on the basis that the child is the victim of a crime by her mother.”

Birthrights and the British Pregnancy Advisory Service (bpas) intervened in the case because they believed it would establish a legal precedent which could be used to prosecute women who drink while pregnant and would do nothing for the health of alcoholic mothers and their babies.You can read our intervention here: BPAS-Birthrights CP v CICA Intervention.

We welcome the ruling today. Rebecca Schiller, co-chair of Birthrights and Ann Furedi, chief executive of the British Pregnancy Advisory Service explain:

“This is an extremely important ruling for women everywhere. The UK’s courts have recognised that women must be able to make their own decisions about their pregnancies.

“Both the immediate and broader implications of the case were troubling. In seeking to establish that the damage caused to a foetus through heavy drinking was a criminal offence, the case called into question women’s legal status while pregnant, and right to make their own decisions. Any ruling which found that drinking while pregnant constituted a ‘crime of violence’ could have paved the way to the criminalisation of pregnant women’s behaviour – an alarming prospect given the ever expanding list of activities women are warned may pose a risk to the health of their baby.

“A small number of women drink very heavily throughout their pregnancy. Their problems will not be helped either by the threat of prosecution – making them even less likely to seek help – or through ever more warnings about the dangers of ‎drinking while pregnant. Women in this situation need rapid access to specialist help and support, as do children born with disability caused by alcohol abuse. This case was brought by the council in order to win compensation for a child born with Foetal Alcohol Syndrome, which could be used to fund her care. We must find a way to ensure that the small number of children born with this condition have the resources they need to live their lives to the full without resorting to criminalising their mothers.”

Hearing today in Foetal Alcohol Syndrome case

The Court of Appeal hears the case of CP v Criminal Injuries Compensation Authority today. It will be considering whether consumption of alcohol during pregnancy can constitute the crime of poisoning. Birthrights and the British Pregnancy Advisory Service (bpas) have provided written submissions to the Court to highlight the serious potential consequences for women’s health and autonomy.

You can read our submission to the court here: BPAS-Birthrights CP v CICA Intervention

In the case, a council in the North-West of England is seeking to prove that the mother of a six-year-old girl born with Foetal Alcohol Syndrome (FAS) committed a crime under the Offences Against the Persons Act 1861 by drinking during pregnancy. The case is of profound social significance, as if the court were to interpret the law as requested by the council, it would establish a legal precedent which could be used to prosecute women who drink while pregnant.

Similar developments in U.S. have resulted in the incarceration of women. Consequently, the American organisation National Advocates for Pregnant Women (NAPW) have called on the court to ‘reject efforts to create criminal penalties as a mechanism for addressing health problems women may face during pregnancy.’

FAS is a complex condition, denoting a collection of features including retarded growth, facial abnormalities and intellectual impairment, and there is continuing uncertainty in the medical community over the relationship between alcohol consumption and harm tpregnant_alcoholo the foetus. While it occurs in babies born to alcoholic women, most babies of alcoholic women will not be affected, as other factors – including nutritional status, genetic make-up of mother and foetus, age and general health – are also believed to play a role. There were 252 diagnoses of the syndrome in England in 2012-2013.

Pregnant women with addiction problems need rapid access to specialist support services, as do children born with disability caused by drug or alcohol abuse. Birthrights and bpas do not believe that mothers and their babies will be best served by treating pregnant women who need help as criminals.

“Viewing these cases as potential criminal offences will do nothing for the health of women and their babies. There is a strong public interest in promoting the good health of pregnant women and babies, but, as long-standing government policy recognises, this interest is best served by treating addiction and substance abuse in pregnancy as a public health, not criminal, issue,” said Ann Furedi, chief executive of bpas and Rebecca Schiller, co-chair of Birthrights.

“As well as undermining women’s ability to make their own choices while pregnant, women with substance addictions may avoid engaging with health services or feel compelled to terminate their pregnancy rather than continue and face criminal sanctions. It could also make health professionals responsible for reporting women in their care to the police.”

“Both the immediate and broader implications of this case are troubling.  Making one particular form of behaviour during pregnancy into a criminal offence would lay the ground for criminalising a wide range of other behaviours because they may too pose a risk to the health of the baby. When we consider that the taking of necessary medication, such as treatment for epilepsy or depression, or the refusal of a caesarean section could be seen to fall into the category of maternal behaviours that may damage the foetus, the trajectory of such an approach is deeply worrying.”

“We should take very seriously any legal developments which call into question pregnant women’s fundamental right to bodily autonomy and right to make their own decisions. Pregnant women deserve support and respect, not the prospect of criminal sanction for behaviour which would not be illegal for anyone else.”

More details about the case are available in our previous post.