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.

Posted in news and events |

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.

 

Posted in news and events |

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

 

Posted in news and events |

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

Posted in news and events |

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.

Posted in news and events |

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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Can we reduce the risk of miscarriage?

Research in Denmark published today* highlights some of the key risk factors for miscarriage that women might be able to modify, either before conception or during pregnancy.  Overall, it’s a useful study in that it confirms what we already know, but it does raise some questions too, so let’s look at what it says.

The headlines

Before conception, the key factors associated with an increased risk of miscarriage were shown to be maternal age of 30 or more, and being very overweight or underweight.

During pregnancy, the key factors associated with an increased risk of miscarriage were alcohol consumption, lifting weights of over 20 kilograms every day and regular night-shift working.

According to the research, reducing all these risk factors to very low level could prevent around a quarter of miscarriages.  In particular:

Before conception The researchers estimate that if all women conceiving were aged between 25 and 29 and were a reasonable weight for their height, this could reduce miscarriage numbers by 14.7%.

The trouble is that this doesn’t reflect reality for many women, especially in relation to age.  Most women don’t plan pregnancy with such a narrow time-frame in mind – there are many other circumstances that affect their choices, including social and economic needs like education, employment and housing and space between pregnancies.  It also doesn’t take possible fertility problems into account – many couples aren’t able to conceive when they want to.

During pregnancy The researchers estimate that if women do not drink any alcohol during pregnancy, do not lift heavy weights daily and work day shifts only, this could reduce miscarriage rates by 12.5%.

This is a reminder of existing health advice about avoiding or minimising alcohol consumption in pregnancy, and of employment advice for pregnant women to have a risk assessment if they routinely lift heavy weights at work (e.g. in nursing or care work).

The information about night working is new, but the percentage increase in risk is extremely small.  It also doesn’t refer to the number of hours worked per shift, so it’s hard to know why the researchers chose to highlight it.  If you’re worried about your shift patterns or hours in pregnancy, though, do ask for a pregnancy risk assessment.

So what does this mean for me?

This research can help to remind you about things that you might be able to do or to avoid when planning a pregnancy or when you’re pregnant.  (You’ll find most of it – and more besides – in our leaflet Thinking about another pregnancyhttp://www.miscarriageassociation.org.uk/wp/wp-content/leaflets/Thinking-about-another-pregnancy.pdf).

What it doesn’t do is to make it clear that risk is not the same as cause.  It makes sense to reduce risk factors when you can – just as you do in any walk of life – and that can help increase the chance of having a healthy pregnancy.    But if you have any of those risk factors and you miscarry, that doesn’t mean that any one of them caused your miscarriage.  All you can do is your best – and you are probably doing that already.

Nevertheless, if you have any questions or concerns about this research or anything else regarding miscarriage, do get in touch, by phone (01924 200799) or email (info@miscarriageassociation.org.uk).  We’ll always do our best to help.

 

 

*  Feodor Nilsson S, Andersen P K, Strandberg-Larsen K, Nybo Andersen A-M.  “Risk factors for miscarriage in a prevention perspective: a nationwide follow-up study.”

Published in BJOG: An International Journal of Obstetrics & Gynaecology, on 19.2.14.  http://dx.doi.org/10.1111/1471-0528.12694

 

Posted in news and events |

RideLondon-Surrey 100

The ballot results for RideLondon-Surrey cycle challenge are in the post!

A hugely over-subscribed event launched last year, RideLondon-Surrey 100 is on Sunday 10 August 2014, offering the opportunity to take on a cycling challenge like no other through the closed streets of London and the Surrey hills.

Just hours before the world’s top cyclists race the RideLondon Classic, 20,000 cyclists will have the chance to cycle a modified version of the London 2012 Olympic road race – 100 miles of city streets, country roads and the famous Box Hill in Surrey.

You can find out more on the RideLondon-Surrey website.

If you’d like one of our charity places, we’ll ask you to pay a (non-refundable) £50 registration fee and to commit to raise a further £600 or more for the miscarriage Association.  If you’re willing to do that and if we have a place available, you’re in!  Just contact us, complete our pledge form and we’ll give you the link to register.

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Developing our work in 2014

The first Trustee meeting of 2014 saw us reviewing our workplan for the next 12 months.

That includes research and campaigns relating to people whose needs and feelings after pregnancy loss often get ignored: partners of women who miscarry, and under 20s.

It includes more work supporting health professionals to provide good and sensitive care; and support for research that can improve the understanding, treatment and prevention of pregnancy loss.

We’re developing our website with a Frequently Asked Questions area, making the site responsive to mobile phone users (58% of you!) and further developing our online presence.

And of course, we’re encouraging you to get involved – as supporters, fundraisers, awareness-raisers and other volunteer roles. Together let’s make sure that the Miscarriage Association continues to make a positive difference for people affected by the loss of a baby in pregnancy.

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