Birthrights concerned by coronial stillbirth proposals

Birthrights has today published its response to the consultation on coronial investigations into stillbirths which closes on the 18th June. We urge all those with an interest to submit a response before the deadline next Tuesday.


Birthrights recognises the positive intent to help families, who have suffered the heartbreak of a stillbirth, to access an independent investigation about what happened. However, we believe that further consideration and impact analysis is needed to ensure these proposals deliver what families need, without putting further strain on an over-stretched coronial system and unintentionally blurring the legal definition of personhood, which could have serious consequences for the scrutiny and rights of pregnant women. It is crucial that women and families are kept at the heart of any future process.

We are calling for:

  • Parents to have the final say over whether a post-mortem is conducted, not the coroner
  • Families to be given information about what the coronial process involves in order to make an informed decision about whether to proceed, and to have access to proper support throughout the process
  • Provision for legal aid for families to be represented in the coroners court
  • Safeguards to be put in place around the questioning of the person who gave birth, particularly their antenatal choices which may be put under scrutiny
  • Media reporting restrictions to be put in place to protect families’ right to privacy 
  • Proper assessment of whether the coronial system has the capacity to take on these investigations
  • A full equalities impact assessment to be conducted before any changes are introduced 
  • Further consideration of how coroners investigations fit with other processes, some of which are quite new, such as HSIB investigations
  • Consideration of whether other non-legal processes, such as open disclosure, may better meet the policy objectives 

Chief Executive Amy Gibbs commented:

“We deeply sympathise with families who have experienced the tragedy of a stillbirth and know many bereaved families feel current investigations and procedures have been inadequate and defensive. It is essential that the Government gets these proposals right to honour these families, without creating unintended consequences. As our response sets out, we believe that creating a new and distinctive set of coronial powers that permit a coronial enquiry and investigation, where bereaved parents have given informed consent and are supported by appropriate safeguards, is the only acceptable solution compatible with human rights principles.”

Birthrights and partners submit evidence to the UN

Last week Birthrights joined with the White Ribbon Alliance, the Royal College of Midwives (RCM) and Make Birth Better, to submit evidence to the UN Special Rapporteur, about how pregnant women are treated in the UK.

The UN Special Rapporteur, Ms. Dubravka Šimonović has identified the issue of mistreatment and violence against women during reproductive health care and childbirth as the subject of her next thematic report to be presented at the UN the General Assembly in September 2019.

Whilst there is much to celebrate about maternity care in the UK, disrespectful care is still far too common, with women whose life circumstances are more complex, less likely to receive safe and dignified care.

The joint submission to the UN can be found here.

Birthrights and Leigh Day announce three-year partnership to promote women’s human rights in childbirth

Birthrights, the UK’s human rights in childbirth charity, and Leigh Day, a law firm specialising in clinical negligence and human rights, have announced a new partnership over three years, building on previous joint work on specific projects. The new agreement includes a package of corporate financial support, fundraising activity, pro bono and in-kind support, and joint communications and campaigns, to achieve the following goals:

“We believe that too many women in the UK experience maternity care that does not respect their basic rights. Our partnership will help us raise the profile of these issues, campaign together to achieve change and enable Birthrights to reach and support even more women.”

In 2018, Birthrights responded to over 170 email requests from women and their online factsheets were visited over 7,000 times. Qualitative feedback shows women and families highly value this information, support and individual advocacy. The partnership with Leigh Day will help Birthrights to reach even more women and equip them to secure their rights in pregnancy and childbirth.

Chief Executive of Birthrights, Amy Gibbs, said: 

“We have been extremely grateful for the close relationship, pro bono advice and generous support from Leigh Day to date. As a small charity, this additional financial commitment over three years is invaluable. Our new partnership will help us achieve our potential, invest in our core activities and put us on a firmer footing for the future. We are particularly excited about the opportunity to grow the profile and reach of our advice and information for women.”

Suzanne White, Partner and Head of Clinical Negligence at Leigh Day, said:

“We are very proud to support Birthrights, a small but vital charity that has already achieved so much in its first six years. Many of the women Leigh Day supports have had their rights in pregnancy and childbirth violated due to negligence and substandard care, resulting in physical injury, psychological trauma or tragedy. Working together we can raise awareness of these issues and push for positive improvements in maternity care.”

About the partners

Birthrights is the UK’s only organisation dedicated to improving women’s experience of pregnancy and childbirth by promoting respect for human rights. We believe that all women are entitled to respectful maternity care that protects their fundamental rights to dignity, autonomy, privacy and equality. We provide advice to women on their rights, train healthcare professionals to deliver rights-respecting care, and campaign to change maternity policy, systems and practice. 

Leigh Day is a specialist law firm with some of the country’s leading clinical negligence, personal injury, employment and discrimination, product liability, international and human rights teams. Unlike other law firms, we act exclusively for claimants who’ve been injured or treated unlawfully by others. We are based in London, Manchester and Liverpool.

Recruiting for Legal Officer – part-time / flexible (2.5 days per week)

£30,000 pro rata – £15,000 actual per annum

Deadline: 5pm on Monday 29 April

Birthrights is looking for a new Legal Officer to help us achieve our mission. If you are a legal expert with strong knowledge of human rights law and maternity care in the UK, practical experience of litigation and a passion for protecting women’s rights, we hope you will apply to join our team.

Birthrights exists because women matter during childbirth. We are the UK’s only organisation dedicated to improve women’s experience of pregnancy and childbirth by promoting respect for human rights. We provide advice and legal information to women, train healthcare professionals to deliver rights-respecting care and campaign to change maternity policy and systems.

Our new Legal Officer will manage and develop our email advice service and online resources, play a core role in our strategic legal and policy work, support the development and delivery of our training and contribute to organisational priorities and development.

Essential criteria include a legal degree or legal professional qualifications, knowledge of human rights law and practical experience of the UK legal system and strategic litigation, knowledge of maternity care policies and practice, excellent communications skills and experience of working in a small team. The ideal candidate will also have experience of providing advice to beneficiaries or the public, knowledge of other relevant UK law, experience of legal policy work and understanding of the issues and context faced by small charities.

Download the job description to see the full list of essential and desirable criteria.

Birthrights values diversity, promotes equality and challenges discrimination in line with our human rights mission. We welcome applications from people of all backgrounds, regardless of their race, gender, disability, religion or belief, sexual orientation or age. We encourage applications from women with lived experience of the issues we tackle, particularly those groups most at risk of human rights violations during pregnancy and childbirth – disabled women, women living with severe and complex disadvantage, and Black, Asian and Minority Ethnic women.

Autism Awareness Day: guest blog by Hayley

Birthrights research in 2013 and 2018 found disabled women reported poorer experiences of childbirth than other respondents. They told us they:

  • received inadequate information about their choices more often than other women;
  • were unhappier with the availability of pain relief; 
  • felt they had less choice and control over their birth experiences;
  • felt that their rights were poorly or very poorly respected;
  • only 19% of women (2018) thought reasonable adjustments had been made for them and some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.

On World Autism Awareness Day, we’re really pleased to publish two guest blogs by Emma and Hayley, which shine a spotlight on the challenges faced by autistic women during pregnancy and childbirth. They show why listening to women, respecting them as experts in their own needs and enabling this through continuity of carer – underpinned by a human rights approach – is so vital.

The autistic birth experience is not necessarily an inherent part of public discourse around birth, disability and health care. Yet, despite evidence showing that autistic people have been part of society for millennia, there is a dangerous lack of awareness about how autistic people give birth.

To take advantage of all the useful narratives and information swirling around social media during Autism Awareness Month, bringing this much-needed topic to the public consciousness is long overdue. I have written personally for years about my experiences of birth and parenting as an autistic woman – my first birth as an undiagnosed woman was certainly a lesson in bad practice, my second birth was overwhelming empowering and positive. However, I hadn’t changed. I was born autistic. How could the same person experience pregnancy and birth so differently, even when the pregnancies themselves were very similar?

My first pregnancy was an unpredictable force of nature, a tornado of failed expectations and instability, created by a health service that had never (knowingly) cared for an autistic woman. But they weren’t alone, I was unaware of my own neurotype and struggled to identify why I wasn’t experiencing the blissful autonomy and self-confidence other new Mums had. From the moment I read my positive pregnancy test, my hands and arms flapping like a happy sparrow in a dust bath, my expectations were rooted in media depictions of pregnancy and birth. The intimate, reliable rapport with my midwife was something I had been told was my destiny, but this story was not to be. With no continuity in care, I never saw the same person twice, deeply exacerbating my problems with social communication and difficulty with changes to routine.

Once I developed Gestational Diabetes, the lack of autonomy over my body intensified. Where, like many autistic people, I relied on fact-sharing as a basis for my conversations, creating visible frictions in medical appointments that I couldn’t understand. What I could understand, however, was the numbers. Black-and-white, controllable blood sugar levels that were my anchor in a sea of discourse built for neurotypical mothers. These were tiny acts of sacrifice, where I tried to claw back my dignity as a Mum-to-be with no other way of expressing it.

This echoed along other symptom-reporting, too, particularly pain. As my recent systematic review of existing evidence showed, autistic people experience pain differently. In terms of touch, cold and heat we sense these things far sooner, whereas deep ‘true’ interoceptive pain is something we have a higher tolerance for. Further work suggests that if sensory preferences are taken into consideration, pain communication and reporting is improved.

However, my birth plan suggestion of ‘no lights, no music or shouting’ was ignored. Coupled with problems in initiating conversation, this gave an overall sense that I was lacking any choice, any dignity over my pregnancy and baby. “The NHS owns this pregnancy, not me” was something I remember telling my husband during the first precious days at home after birth.

What Emma and I want to work towards is that no autistic woman is at a disadvantage because of who she is. We do not want to blame autistic bodies, autistic brains for the problems. It’s a lack of education and awareness on female autism presentation and co-occurring conditions that would lead the way to improvements here. With examples of good practice models available with Mental Health Specialist Midwife roles, we intend to provide training to midwives and doulas across the UK. Autonomy over your birth experience is something we want to put back in the hands of autistic women, as a basic human right.

Autism Awareness Day: guest blog by Emma

Birthrights research in 2013 and 2018 found disabled women reported poorer experiences of childbirth than other respondents. They told us they:

  • received inadequate information about their choices more often than other women;
  • were unhappier with the availability of pain relief; 
  • felt they had less choice and control over their birth experiences;
  • felt that their rights were poorly or very poorly respected;
  • only 19% of women (2018) thought reasonable adjustments had been made for them and some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.

On World Autism Awareness Day, we’re really pleased to publish two guest blogs by Emma and Hayley, which shine a spotlight on the challenges faced by autistic women during pregnancy and childbirth. They show how listening to women, respecting them as experts in their own needs and enabling this through continuity of carer – underpinned by a human rights approach – is so vital.

My name is Emma Durman – I’m a late diagnosed Autistic woman with several co-occurring conditions. I’m also co-director of Autside, a training and consultancy company that specialises in Autism and neurodiversity, and a final year MSc student focusing my dissertation on the Autistic experience of pregnancy, birth and motherhood.

Disabled people have long been infantilised and desexualised and thus disabled women’s birth experiences have often been overlooked in research and support. Autistic women face the additional issues of disparity of diagnosis, meaning we – and those around us – often do not realise we have additional or differing needs in the maternity and birth process.

My birth experience was traumatic. On paper, it probably reads as uneventful. Normal vaginal birth, less than 24 hours. But internally, it has left scars that will never heal, stolen precious memories I can never regain.

I met my daughter on the worst day of life. It feels like a betrayal even to write such words – the birth of your child is meant to be the best day of your life, bar none, full of wonder and magic and overwhelming love, with the inconveniences of pain, fear and discomfort ushered away, forgettable, the moment you see your baby.

I am Autistic, and maybe it is my neurotype, or my nature, but I find it extremely hard not to be honest. And in honesty I did love my child. Of course. And there was wonder and amazement. But there was also unrelenting, overwhelming pain, anxiety, trauma and a thick layer of fog and disconnect that did not dissipate magically and completely. No, instead it stayed with me, as I tried to orient myself in a new and terrifying world, surrounded by people that did not understand me or respect my needs and wishes, that at best were dismissive and at worst openly hostile. It stayed and coloured the moments I laid eyes on my beautiful daughter, it stayed and infiltrated the days, weeks and months after her birth, sending me into a spiral of post traumatic stress and depression that made it difficult to function, to bond with my baby. That made me reliant on my partner to such an extent he had to refrain from returning to work for 9 months, and suffered his own mental health issues as a result.

I can never get that time back, those moments when time stands still, that stay with you forever. But I hope that my research, my work, the training for midwives and health professionals I am developing, along with that of my colleague Hayley, will make those moments safer, happier for other Autistic women. For my own daughter if she decides to have children of her own.

Autistic women have the same human rights as anyone else. But true equality is not about everyone getting the same treatment – is is about everyone getting the treatment they NEED.

Autistic women need their specific sensory, social profiles acknowledged and supported, recognising the enhanced anxiety we face daily in navigating a world that does not naturally accommodate our neurotype. We need our pain validated even if it does not look as expected. We need to feel safe and understood – and we need to be informed and included in decisions about our care.

Disparity in healthcare for women and disparity in healthcare for disabled people. The intersectionality of this combined with the complexities of the Autistic experience mean we are at a definitive disadvantage in healthcare, with research showing high mortality rates for those with Autism and/or Learning Disabilities. I am hopeful that Birthrights’ unique focus on human rights during maternity care can be applied to the Autistic experience to great benefit. It could mean improved outcomes for mothers, fathers, and children. It could mean the greatest gift of all – a birth that is safe and happy, a joy to remember.

Birthrights responds to the CQC’s national maternity survey

Commenting on the findings of the CQC’s national maternity survey, Amy Gibbs, Chief Executive of Birthrights, said:

“It’s positive that overall 88% of women surveyed felt they were ‘always’ treated with respect and dignity during labour and birth, but other findings highlight areas where maternity care is failing to respect women’s basic rights.

“Every woman has the right to choose where and how she gives birth, yet 15% said they were not offered any choices about where to have their baby and a quarter said they were not always involved enough in decisions about their care during labour and birth.

“Above all, the findings underline how vital continuity of carer is to improving women’s maternity experiences, giving them time and space to ask questions and make decisions that are right for them. We know that seeing the same midwife through pregnancy, birth and afterwards can make all the difference and help ensure safety goes hand in hand with dignity and respect. Yet only 15% of women reported that the midwives who cared for them during labour and birth had been involved in their antenatal care.

“It’s clear we need renewed commitment and drive at national and local levels, to ensure the vision of Better Births is achieved for most women to have continuity of carer by 2021.”

The full findings of the CQC’s maternity survey 2018 can be found here.

Birthrights responds to the NHS Long Term Plan

Responding to the publication of the NHS Long Term Plan today, Amy Gibbs, Chief Executive of Birthrights, said:

“We are really pleased to see improving maternity care at the heart of the NHS Long Term Plan, particularly the commitment that most women will receive continuity of carer by March 2021. We know that seeing the same midwife through pregnancy, birth and afterwards can make all the difference to women’s experiences and help ensure safety goes hand in hand with dignity and respect. This ambition must be backed up by investment in recruitment, retention and training, so NHS trusts up and down the country can make this pledge a reality for all women and midwifes are equipped to deliver rights-respecting care.

“We also welcome the goal to give more women access to mental health support following birth. In line with the Plan’s general focus on prevention, we would like to see equal effort on doing everything possible to avoid trauma during birth. How women are treated during their pregnancy and childbirth is a major driver for whether they experience trauma, so it is vital that delivery of the NHS Long Term Plan embeds respect for women’s rights to dignity, autonomy, privacy and equality explicitly into maternity care.”

Notes
The new NHS Long Term Plan includes commitments to:
  • reduce stillbirths and mother and child deaths during birth by 50%
  • ensure most women can benefit from continuity of carer through and beyond their pregnancy, targeting those who will benefit most
  • expand support for perinatal mental health conditions

Reflections on 2018

Four weeks into being Birthrights’ new Chief Executive, I’m feeling very lucky to lead such a brilliant organisation and brimming with positivity and ideas for 2019. I’m blessed with a very talented team, engaged and expert Trustees, supportive funders, invaluable partners and a wider enthusiastic pool of people who share our mission to improve women’s experience of pregnancy and childbirth by promoting respect for human rights.

As 2018 draws to a close, we wanted to share our highlights from the year. And since it’s Christmas, here are our top 12. I’m so impressed by how much has been achieved by our small but perfectly formed team – showing why #smallbutvital charities are so important. Clearly, I can take no credit for these and my thanks goes to the team and my predecessor, Rebecca Schiller, who I’m delighted will be joining the Board of Trustees next year.

In 2018, we’re proud to have:

  1. Launched our biggest campaign yet on the right to maternal request caesarean section
  2. Responded to over 170 email requests for advice from women in need
  3. Seen our online factsheets visited over 7,000 times – a 7% increase on 2017
  4. Delivered 18 speaking engagements or training sessions to healthcare professionals
  5. Strengthened our links with NHS England, the Royal College of Obstetricians and Gynaecologists, Royal College of Midwives, General Medical Council, Parliamentary and Health Service Ombudsman, Public Services Ombudsman for Wales
  6. Engaged with the Maternity Transformation Programme Stakeholder Council and numerous NICE consultations
  7. Secured a new grant from the Esmée Fairbairn Foundation to expand our team and impact
  8. Progressed our Baring Foundation and Trust for London funded work on women with complex needs
  9. Welcomed new team members, trustees, Associate Trainers and accountants on board
  10. Improved our financial systems and capacity to report on budgets and grants
  11. Deepened our partnership with Leigh Day and explored other corporate partnerships
  12. Continued our crucial collaborative relationships with Birth Companions and BPAS

And much more besides… Merry Christmas and thank you to all our funders, supporters and partners – I look forward to meeting and working with you in 2019!

Recruiting new Legal Officer

Birthrights is the UK’s only organisation dedicated to improving women’s experience of pregnancy and childbirth by promoting respect for human rights.

The Legal Officer is a new and critical role at Birthrights to manage our advisory and legal work, including running the advice service, overseeing strategic litigation and providing legal policy input with core stakeholders.

This is a part-time home based role, with a pro-rata salary of £15,000. To find out more and how to apply please download the Job Description.

Closing date for applications is 5pm on Wednesday 27th June 2018.