Maternity Review fails to address miscarriage care

Women who experience pregnancy loss before 24 weeks have been ignored by the national Maternity Review published yesterday. This is deeply disappointing and a missed opportunity to set standards for good, compassionate miscarriage[1] care.

 

The review sets out a five year forward view for improving outcomes of maternity services in England. While we welcome its call for safer, kinder and more personalised maternity services, it is dismaying to see that women affected by miscarriage, ectopic or molar pregnancy miss out on any detailed recommendations for their care.

 

Despite the Miscarriage Association being invited to participate, and contributing evidence to the review, experience of ‘maternity services’ appears to have been counted only after the first booking-in visit (usually at around 12 weeks of pregnancy). Even then there is barely any reference to miscarriage – the most common complication of pregnancy – and none at all to ectopic or molar pregnancy.

 

A small number of key points* within the section “What we heard from women and their families” would clearly be relevant to women who lose a baby at any stage of pregnancy, yet losses before 24 weeks are simply not mentioned. What’s more, many of these points are completely absent from the report’s recommendations; despite the reported concerns of women and their partners, the need for improved communication skills, empathy, support after loss and consideration of the place of care is notably lacking.

 

It is to be hoped that the Maternity Review does improve care for women and their babies. Without reference to miscarriage, ectopic pregnancy or molar pregnancy, however, it is highly unlikely to lead to improvement, in care for the thousands of women and families affected by pregnancy loss.   It seems that we need to look to other organisations – notably the Association of Early Pregnancy Units and the Royal College of Obstetricians and Gynaecologists – as well as to like-minded charities, to create change and improvement for pre-24 week pregnancy care.

 

* Selected key points from the Review

Communication

(3.8) Many women told us about the importance of good quality and consistent communication and emphasised how vital it is for professionals to communicate with each other. There is widespread interest in using electronic records so that women would not have to explain their situation to every new healthcare professional they meet. Women wanted healthcare professionals to have read the notes before meeting with them. This is particularly important if they have had a stillbirth, miscarriage or experienced complications.

(3.11) Women who had experienced stillbirth consistently said that they wished they had been better informed about the risks, especially those symptoms they might have acted upon such as reduced fetal movements. Particularly during their first pregnancy, women found it difficult to know what signs to look out for. Parents said they wanted to be listened to and taken seriously when they expressed concerns about their baby. We heard from parents who had felt something was wrong with their baby, but when they raised their worries they were ignored or patronised, and no action was taken.

Care when a baby dies

(3.12) When a baby dies, nothing can take away the pain for the families, but we heard many accounts of kind, compassionate care that made the experience better and helped parents to create positive memories. On the other hand we heard too from families who said they were treated with a lack of care and kindness. Insensitive language and dismissive remarks lodged in parents’ minds, causing hurt and polluting memories of the often very short time they had with their baby.

When their baby had died, families said the environment where they were looked after made a big difference. Many parents told us they were made to share facilities on labour wards with those who had just given birth and therefore within earshot of crying new-borns, which greatly added to their trauma and distress. In contrast other families greatly appreciated being cared for in the privacy and calm of a bereavement suite.

(3.13) Parents told us that they would have liked more time to come to terms with their loss before having to leave the hospital, leave their baby, or decide what would happen to their baby. Many felt rushed through the process and not treated with the kindness and compassion that they needed.

 


[1] In this context, the term ‘miscarriage’ is taken to include miscarriage, ectopic pregnancy and molar pregnancy.

 

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Powerful words

It is just two minutes long, but Richard Littledale’s ‘Prayer for the Day’ on BBC Radio 4 captures so much of what pregnancy loss means, that we don’t need to add our own words here.

Do take two minutes to listen.

 

 

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Gene editing: a complicated issue

You’ll probably have heard or read that the Human Fertilisation and Embryology Authority (HFEA) has given the go-ahead for research involving gene editing of embryos. These are ‘spare’ embryos left after IVF, that would normally be destroyed*.

The aim of the research is to understand better what happens in the earliest days of embryo development, especially what makes the difference between embryos developing normally or failing to develop at all or beyond a day or two. That can help scientists understand more about possible causes of miscarriage or, indeed, infertility.

It’s a complicated issue for many people. On the one hand, there is a concern about tampering with human genetics, and some people worry especially about the use of this kind of science to create ‘designer babies’. On the other hand, the possibility of growing our understanding and knowledge of early development might hold out hope for reducing the incidence of miscarriage or some fertility problems. And of course, genetic testing and intervention is also important for the study and potential prevention of diseases like cystic fibrosis.

Our thanks to M.A. media volunteers Michelle, Emma and Julie who have all given their views on television and radio:

• Michelle talked to Sky News a few weeks ago when the HFEA was considering whether to give permission; she was also interviewed by Al Jazeera News and the Sun on Sunday;
• Emma gave her perspective on BBC News (repeated throughout the evening) and on Sky News, as well as providing comment to the Daily Mail;
• Julie spoke on Radio 4’s ‘The World Tonight – 32mins 57 seconds into the programme;
• And M.A. director Ruth spoke on BBC News 24 yesterday evening, also repeated on other BBC channels.

* N.B. It is important to know that the embryos to be studied are ‘spare’ embryos left after IVF treatment, which are normally destroyed. They will be used for up to a week in this research before being destroyed as the law requires.

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Making a difference

Thanks to M.A. supporter Alison Falcucci, the Miscarriage Association has just received a donation of $9,700 (approximately £7,000) from the Crane Fund for Widows and Children.

Alison, a Crane employee in Ipswich, writes:

“It was lovely for a charity like the Miscarriage Association to have the chance of receiving such a substantial donation, especially when it was my personal nomination – knowing all the hard work you all do and the support you provide during people’s difficult times and times of need is something that cannot be taken for granted.  The information and knowledge you provide is priceless.”

The M.A. was one of five charities nominated by employees of Crane Building Services & Utilities UK.

Pictured below, left to right, are: Alison Falcucci, who nominated the M.A.; Ruth Bender Atik, M.A. Director; and Judy Lumsden, President, Crane Building Services & Utilities UK.

 

Crane Fund for Widows and Children Jan2016 (2)

 

 

 

 

 

 

 

 

 

 

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Miscarriage research takes centre stage

As the European team at ESHRE* scrutinise existing research on the causes and treatment of recurrent miscarriage, there is renewed hope for future research here in the UK, as Tommy’s charity announces the UK’s first national (and Europe’s largest) clinical research centre dedicated to early miscarriage.

Due to open on 1st April, the National Early Miscarriage Centre will comprise a partnership of three universities: The University of Birmingham, The University of Warwick, and Imperial College London.

The three sites, led by Professors Arri Coomarasamy, Siobhan Quenby and Lesley Regan respectively, are already well known as centres of excellence for both specialist care and clinical research.  The new centre, funded by Tommy’s, will create a wonderful opportunity for much more research into the causes, management, treatment and, where possible, the prevention of early pregnancy loss.

Our warmest congratulations to all concerned.

 

*ESHRE, the European Society for Human Reproduction and Embryology, is creating European guidelines on the investigation and treatment of couples with recurrent miscarriage.  The Miscarriage Association is delighted to be representing the patient perspective during this process.

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Understanding miscarriage

We were delighted to be invited to contribute to a 20 minute podcast about the facts and feelings of pregnancy loss, which is now available online.

The podcast features an interview between ‘BabyToddlerMe’ founder Fatima Wesson (below) and M.A. Director Ruth Bender Atik.

Fatima-cropped

 

Fatima writes:

“This is a really important episode where Ruth from the Miscarriage Association gives us some excellent and helpful information about miscarriage.

“We talk about how common it is, what causes it and we also delve into some of the emotional aspects of miscarriage. If you’ve ever had a miscarriage or you have a loved one that has had one, then this is the episode for you.”

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What miscarriage research would you like to see?

The Miscarriage Priority Setting Partnership is currently running an online survey to help shape the future of research into miscarriage.

They want to know what sort of things people think should be researched when it comes to miscarriage.  And the people they especially want to hear from are women and men who have experienced a loss, as well as their friends and family and health care professionals.

The online survey gives you the opportunity to state the questions about miscarriage that you think need answering.  Taken together, all the questions will help inform future research, which can in turn help improve care and treatment.

PSP_logo_FINAL_web

If you would like to add your views, please visit www.MiscarriagePSP.org to complete the survey, which will be open until Monday 4th January 2016.

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Coping with the festive season

It’s nearly Christmas, as well as the Hindu festival Pancha Ganapati. A time for celebrating, a time for family and friends and, very often, a time where children and babies are in the forefront of people’s minds.

Some of you will find this a very dark time and might struggle to get through the next few days. Some of you will be deeply thankful for the baby or babies you now have. Either way, many of you will be thinking about your lost babies, the children who might have been.

 

Christmas bauble

 

Please remember that we are here for you.

  • Even when we close for the holidays (Fri 25 and Mon 28 December; and Fri 1 January) we have a small group of volunteers who are happy to offer telephone support. (Call 01924 200799 to get their contact details.)
  • If you join our support forum by 3 p.m. on 24 Dec, or between 29 and 31 Dec, you can post and read messages throughout the breaks, thanks to our volunteer moderators.
  • You can use our Facebook page and groups at any time to share your thoughts and feelings with others.
  • You may want to create a message to your baby or babies on our Lights of Love tree at http://www.miscarriageassociation.org.uk/support/marking-your-loss/lights-of-love-tree/

You may also feel that this is a perfect time to support the Miscarriage Association, to help us to be there for others who have lost a baby in pregnancy.  Please consider making a donation and/or visit http://www.miscarriageassociation.org.uk/get-involved/ to see how you can help to make a difference.

Here’s hoping you have a gentle and peaceful holiday season and a happy 2016.

From all of us at the Miscarriage Association.

 

 

 

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Lights of Love: remembering babies who died in pregnancy

At this time of the year, as the days get shorter, our minds start to turn to the upcoming holiday season. It’s traditionally a time of celebration, but we know how hard it can be for those who’ve experienced a miscarriage, ectopic or molar pregnancy.

The M.A.’s Lights of Love tree is a memorial to babies loved and lost in pregnancy.  On our online tree, each star holds a message of remembrance to a baby or babies lost through miscarriage, ectopic pregnancy or molar pregnancy – creating a beautiful place to mark those brief lives.

We also have a small tree in our Wakefield office.  Covered in tiny white lights, the tree offers an alternative memorial spot – or you might like to use both.  You can read about both options here.

Whether or not you choose to use the trees, please do remember that we’re here to offer support via phone, email, our online forum, Facebook and local support volunteers.

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“Flu vaccination in pregnancy protects both mothers and babies.”

The Miscarriage Association is supporting the Royal College of Obstetricians & Gynaecologists (RCOG) and the Royal College of Midwives (RCM) in encouraging more pregnant women to come forward for the free flu vaccine this winter.

In a statement issued last month,  Dr Patrick O’Brien, spokesperson for the Royal College of Obstetricians and Gynaecologists (RCOG) said:

“Any viral infection, including seasonal flu, can cause harm to a mother and baby during pregnancy. It can also be serious for newborn babies if they catch the infection from their mothers.

“Some women may be concerned that getting vaccinated during pregnancy might harm their baby* but we want to reassure them that flu vaccination is safe, effective and can be given at any stage of pregnancy. Having the flu vaccine will also protect your baby during the first few months after birth.

“We strongly encourage pregnant women who haven’t had the vaccine yet, to contact their GP or midwife today.”

* We understand that many women and their partners will worry about the risk of the flu jab causing miscarriage. It may help to know that the evidence shows that the risks of flu to mother and baby are much higher than the risks of the vaccine. 

You can also read Public Health England’s guidance for doctors here.

 

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