Late miscarriage: second trimester loss

Miscarriage can be a devastating experience at any stage of pregnancy. But when it happens later in pregnancy, it can be even more of a shock.

As well as the distress of losing a baby, most women have to go through the process of labour and delivery.  It can be emotionally and physically exhausting for them and their partners.

If this has happened to you or to someone you know, you may find it helpful to read our leaflet Late miscarriage: the experience of second trimester loss. It includes information about the causes and management of late miscarriage as well as comments from women who have been through this experience.

You might also want to visit our forum, where you can share your thoughts and feelings with others who have been through a late loss.

There is a short story about late loss, entitled “The Anniversary”, in our Reflections section.

 

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June: thinking about the month ahead

For many visitors to our website, thinking about the month ahead is filled with meaning.

There may be hopes that this is the month of a positive pregnancy test; anxieties about a scan in this particular month of pregnancy; sadness thinking what this particular month should have meant…

In every case, we’re here for you.  We can provide information about pregnancy loss, help explain terminology and let you know about treatment and research.   We can offer you support and a listening ear, whether that’s over the phone or online, in a support group or by e-mail.

We may highlight a particular issue, publish a new leaflet or announce a new awareness campaign.  We might encourage you to support us by raising funds for our work.

But whatever we do, you are the core.  It’s your needs that matter and we’ll always do our very best to answer them.

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Developing a new resource for young people

Are you aged between 16 and 20?  Would you like to take part in a creative workshop to help us develop a new resource for young people who miscarry?  If so, please read on!

Photo of young people

The Miscarriage Association and Brook know that there’s not much support out there for young people when it comes to miscarriage and ectopic pregnancy.  Your voices and experiences are missing and your needs are not being met. We’re working together to change that.

First we need to understand what you know, what you don’t know, what you’d like to know and what’s missing.  We want to understand more about the support that works best for you and how you like to get that support.

If you are 16-20 and live in London, we’d like to hear from you. We have an opportunity for you to join us at a creative workshop to start this project. This is a one off event to let you test the waters and see if you’d like to help more in the future.

[If you don’t live in London, we’d still love to hear from you – check out the end of this message.]

It doesn’t matter if you have experienced miscarriage or ectopic pregnancy yourself – we’re looking for a range of male and female perspectives and experiences. You won’t have to share any personal experiences but you will have a chance to take part in activities, give your opinions and influence the way that the Miscarriage Association provides support for young people.

The details

What will I get?

  • A one-off volunteer experience with two leading charities to add to your CV
  • A chance to get involved in the process of developing digital resources
  • A chance to help us help young people who experience miscarriage or ectopic pregnancy
  • An increased understanding of miscarriage and ectopic pregnancy
  • Delicious snacks and drinks
  • Your travel expenses (a travel card or equivalent)

When is it?

Tuesday 27th May from 5.30 – 7.30

Where is it?

Brook, 2nd Floor, 50 Featherstone St, London, EC1Y 8RT

How do I get involved?

If you’re interested in taking part, please fill in this form and we’ll get back to you.

I’d like to get involved but I don’t live in London?

If you don’t live in London, we’d still love to hear from you. We’re running a three-day online workshop with daily questions and actions to complete.

Fill in this form and we’ll get back to you with more details.

Thanks!

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Online shop suspended

We have had a report over the weekend of a problem that has generated spam and/or malicious content email from within the Shop section of our website. We do apologise if you have been affected by it.

Our thanks to ACTIV,our IT providers, who spotted the problem and who  immediately disabled the Shop on  our behalf.  We will restore it once it is securely fixed.  In the meantime, please contact us direct if you’d like to purchase any items.

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Support from all angles

We’re entering the Miscarriage Association’s 33rd year of providing support to people affected by the loss of a baby in pregnancy.  Whether it’s our staffed helpline, support volunteers, online forum or social media, it’s all about helping people through what can be a deeply unhappy time.

What goes around comes around and we’re delighted to have support for our work from so many people.  Last weekend saw 6 people running their socks off to raise funds for the M.A..  Today Dan and friends are racing against the clock, attempting to visit every single Premier League Ground within a 24 hour period.  And this Sunday sees our 29-strong London Marathon team pounding the streets to raise funds – and awareness – for the M.A..

There’s support from and within the NHS too.  It’s good to be involved in promoting NHS England’s report on the support available for patients experiencing pregnancy loss.  Good to see more hospitals buying in our training to enable them to provide better care.  And good to be working with the Association of Early Pregnancy Units to develop that training further.  We need to support heath professionals properly if we want them to provide the best patient care.

It’s a virtuous circle and we welcome everyone to come on board.

 

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A sensitive issue

There has been much publicity recently about the way that hospitals deal with the remains of babies lost in pregnancy.  Despite existing guidance which highlights that pregnancy remains should be disposed of with dignity and respect, some pregnancy remains are still incinerated along with clinical waste.

While this is not illegal, except in Scotland, it is clearly unacceptable.  So too is the practice of telling parents that the remains of their pregnancy will be cremated when in fact they will be incinerated.  We recognise that this might be said with the intention of “softening the blow” – or possibly through lack of knowledge – but this too is completely unacceptable.

While the publicity has undoubtedly caused considerable distress to parents – including those whose babies were disposed of respectfully through cremation or burial – it is also having a positive effect.  The Department of Health has urged the Human Tissue Authority to review and clarify its guidance for NHS and Foundation Trusts, and to work with the appropriate Colleges, professional associations and charities in doing so.

We heartily welcome this initiative and have offered our fullest support.  It is crucial that the revised guidance takes account of patients’ perspectives and we will always have those interests at heart.

Our position

The Miscarriage Association firmly believes that the cremation or burial of all pregnancy remains below 24 weeks gestation should be standard practice across the NHS, under the following conditions:

  • There should be clear information, verbal and written, as to whether this will be individual or communal cremation or burial
  • Parents should be offered the option of making their own private arrangements; and suitable containers provided if they wish to take the remains home
  • There should be clear information as to the time parents have to make a decision; and that if they do not decide, the standard process will apply
  • Staff should receive the necessary information, training and support to enable them to provide this information clearly and sensitively
  • There should be clear administrative procedures to ensure that policies and processes are followed and work well and these should be reviewed regularly.

 

We further recommend that in drawing up their policies and procedures, decision-makers and care-givers should:

  • Learn from patients and patient organisations as to what good care means: high clinical standards, good communication, sensitivity, compassion
  • Follow existing guidance on the respectful disposal of pregnancy remains, including that published by the Human Tissue Authority (1), RCN, SANDS and the current Scottish government protocol (2)
  • Follow the lead of other hospitals which practice excellent care
  • Seek guidance and advice from organisations like the M.A. and SANDS (the stillbirth and neonatal death charity)
  • Make use of the patient support and information we provide, as recommended in the recent NHS England report (3)
  • Ensure good training and support for staff who care for patients who lose a baby in pregnancy or at birth

 

Miscarrying at home

If you miscarry at home you may wonder what to do with the remains of your baby.  You’ll find information here.   Do call us on 01924 200799 if you’d like to talk it through.

 

(1) At www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice/code5disposal.cfm

(2) At www.sehd.scot.nhs.uk/cmo/CMO%282012%2907.pdf

(3) A review of support available for loss in early and late pregnancy, NHS England Improving Quality, February 2014

 

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Miscarriage in the Media

Pregnancy remains:

We have noted with sadness recent reports regarding the storage of pregnancy remains for far longer than should be the case.

Even more disturbing is evidence that in some hospitals, parents have been told that remains will be cremated when in fact they are incinerated along with clinical waste.  While incineration of pregnancy remains is perfectly legal (though now under review), it is clearly wrong to misinform parents in this way.

There are recognised guidelines on how hospitals should treat the remains of pregnancies that are miscarried or terminated.  This must include providing clear information for parents about options for disposal, and how the remains will be disposed of if parents prefer not to make a decision.

We can only hope that the cases highlighted in recent enquiries will lead to a more general review of policy and practice across the NHS and a renewed drive to ensure that they always take account of the needs, feelings and wishes of the parents involved.  We absolutely support the cremation or burial of ALL pregnancy remains rather than disposal as clinical waste and have offered our support to the Department of Health and the Human Tissue Authority in working to this end.

“Dispatches”: 

On Monday 24 March, the TV programme Dispatches (1) will look at care for women and couples who lose a baby in pregnancy or at or shortly after birth.  Titled “Exposing hospital heartache”, the programme’s focus will be on cases where care falls far short of what patients expect and need.

It’s important to note that these cases are the exception rather than the rule and there is much excellent and sensitive care for patients with pregnancy loss.  But there are gaps and it is important for poor care to be identified so that NHS Trusts are prompted to improve it.

Here’s how they can – and should – do it:

  • Learn from patients and patient organisations as to what good care means: high clinical standards, good communication, sensitivity, compassion
  • Follow existing guidance on the respectful disposal of pregnancy remains, including that published by the Human Tissue Authority (2), RCN, SANDS and the current Scottish government protocol (3)
  • Follow the lead of other hospitals which practice excellent care
  • Seek guidance and advice from organisations like the M.A. and SANDS (the stillbirth and neonatal death charity)
  • Make use of the patient support and information we provide, as recommended in the recent NHS England report (4)
  • Ensure good training and support for staff who care for patients who lose a baby in pregnancy or at birth

Let’s all combine our personal and professional knowledge, wisdom and experience to ensure excellent and sensitive care for all patients faced with the loss of their baby.

 

(1) Dispatches: Exposing hospital heartache will be shown on Channel 4 on Monday 24 March at 8 p.m.

(2) At www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice/code5disposal.cfm

(3) At www.sehd.scot.nhs.uk/cmo/CMO%282012%2907.pdf

(4) A review of support available for loss in early and late pregnancy, NHS England Improving Quality, February 2014

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A Day that Matters

For many people who’ve experienced a miscarriage, ectopic pregnancy or molar pregnancy, there are certain days and dates they will never forget. However, because the memories are painful and the subject is difficult to talk about, these dates are often left unacknowledged by others.

Today, we’re launching www.daysthatmatter.org.uk – a new social media campaign which gives our community a space to record stories of pregnancy loss while also pledging to do something to mark their significant dates. Our digital marketing consultant, Natasha Judd, shares some of the thinking behind the campaign in her own #DaysThatMatter story.

We hope that the site will help us raise awareness of miscarriage, ectopic pregnancy and molar pregnancy in communities across the UK and beyond.

The campaign will largely centre around our new website, www.daysthatmatter.org.uk, but will also be visible across our social media channels via the hash-tag #DaysThatMatter.

We encourage anyone who has been affected by pregnancy loss to submit a story using the online form, leave comments supporting others, and to share the link to the site with family and friends.

If you find that you need to talk more about your experience, the Miscarriage Association has a phone and email helpline, as well as an online forum and links to support groups. Find out more about how we can help.

days_that_matter_website

 

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NHS England reports on support after loss

We’re glad to say that NHS England’s ‘Improving Quality’ team have just launched a report and recommendations on support after loss in pregnancy.

Their aim was to provide information about people’s needs around early and late loss, to encourage commissioning groups to get hospitals and GPs to think about reviewing their services. The report:

•    summarises what support currently exists for women and families across England who experience loss at less than 24 weeks gestation
•    describes what support exists for women and families across England who experience loss at greater than 24 weeks gestation (stillbirth and neo-natal death)
•    identifies the key charities involved in this and describes what they offer
•    Identifies areas of good practice, with stories from women with experience of loss.

You can read the full report at http://www.nhsiq.nhs.uk/resource-search/publications/pregnancy-loss.aspx.

Three cheers from us for their taking this on, doing their homework (including meeting us and SANDS) and trying to make things better.  They would have had a fourth cheer if their final recommendations were recommendations rather than “the NHS may want to consider…”, but it’s still a report we can build on.

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A new FAQ section

Guided by the questions you have told us worry you the most, we’ve developed a new FAQ (Frequently Asked Questions) section* on the website.

Our thanks to those of you who provided the questions and to volunteer webmaster Nigel Wood for adding them to the site.

* See www.miscarriageassociation.org.uk/information/frequently-asked-questions.

 

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