Credit: Ian Britton @freefoto.com
Lights of Love: remembering babies who died in pregnancy
This is the time of year when we invite you take part in a
very special act of remembrance for babies lost in
pregnancy, recognising that this is often a particularly
difficult time for those who have lost a baby.
The Miscarriage Association’s Lights of Love tree is a memorial to babies loved and lost, with messages which many of you write to your babies. As before, the tree will be indoors in our Wakefield office and as your messages come in, we will tie them to the tree with white ribbon – or you might want to come and add them yourselves. The tree will be covered with tiny white lights that stay on from mid- December until the 5th January. You will see that the back of the newsletter has labels on it which you can cut out and use, or you might prefer to make your own.
As in previous years, we would like to suggest that you make a donation of £5 when you send us your message(s). We aim to send you a photograph of the tree, so don’t forget to put your name and address on a separate note.
A virtual tree
Thanks to webmaster, Nigel Wood, we also have a webbased Lights of Love tree, where you can add your message to a “virtual” tree on our website. If you’d like to do this, please visit
http://www.miscarriageassociation.org.uk/ma2006/about/lights.htm
As Nigel adds each message, he creates a star, and the messages appear as you move your cursor across the tree.
Meetings, meetings and more meetings: putting miscarriage on the map
The M.A. often receives invitations to, or notices of all sorts of meetings, conferences and events, from research to political/lobbying, and we often have to make hard choices about which ones we attend. Some are seeking our expertise and/or experience, especially as representatives of our members and users; some provide us with new and useful information; some simply provide the opportunity to put miscarriage and The M.A. on the map; and all offer the benefits of networking, creating links with other individuals and organisations that might be useful.
Here are three that went straight to the top of the list:
The National Perinatal Epidemiology Unit (NPEU)
The NPEU is a multi-disciplinary research team which aims to improve the care provided to women and their families during pregnancy, childbirth and the postpartum period, as well as the care provided to the newborn. They use a variety of research methods, from randomised controlled trials, for assessing the impact of a new treatment, to qualitative research to obtain patient views and experiences.
While early pregnancy loss doesn’t feature hugely in their work, it is an area of real interest – for example, they were represented on the advisory group of the Miscarriage Treatment (MIST) trial that compared the three methods of managing miscarriage: surgical, medical or conservative.
Changes in their funding prompted them to set up a meeting in September, where they sought the views of user groups and patient organisations, including The M.A., to discuss the Unit’s future programme of work. They were keen to have our input and ideas for projects and since we have a continuing interest in miscarriage research and statistics, I attended.
The breadth of their research interests was impressive and it was good to be able to see the detail of how they choose particular projects. In particular, though, it was a great opportunity to raise the issues specific to early pregnancy loss and especially some of the most basic research questions: how can we assess the actual rate of miscarriage in the UK? is there a way of compiling national statistics, even if they relate only to hospital admissions?
These are tough questions that aren’t at all easy to respond to, but it was good to get them on the table and – who knows? – perhaps on the agenda of an excellent and relevant research organisation.
The PatientPartner Project
This is a European project investigating, enforcing and advising on the role of patient organisations in clinical research trials. Their goal is to create better partnerships between researchers, their funders (whether government or drug companies) and patients and/or patient organisations.
The M.A. already has experience of clinical research in the area of pregnancy loss. We are often invited to comment on potential research proposals, to support bids for research funding or to comment on funding bids that have been received. We also represent the patient perspective on research steering groups for projects such as the Prednisolone and PROMISE trials. It’s a crucial area of work and interest for The M.A..
M.A. Chairperson Barbara Hepworth- Jones attended the initial meeting in Brussels in June and I went to represent The M.A. at their first regional workshop in London in September. The region in question was North- Western Europe, so there were delegates from France, Germany, Belgium, the Netherlands, Finland etc as well as from the UK.
In representing The M.A., I was in a complete minority. Almost all the “patient” delegates, individuals or organisations, represented lifethreatening or life-limiting conditions, from cancer and heart disease to severe chronic illness and disability, physical and mental. But apart from speaking up from time to time just to get our name and issues out there, I am pleased to say that I was able to highlight some of the barriers that currently exist to patient/researcher partnerships.
One of those is resources. We have expertise, based on our experience of talking to M.A. members and users, and we have access to potential research participants. That is very useful for researchers who need to show that they are taking the patient perspective on board. But it takes time to read through proposals, attend meetings, give advice. And time is not only in short supply in an organisation like The M.A. – it also costs.
The obvious solution is for our time and expertise to be funded, with those costs included in the researchers’ budgets. It may also require some kind of guidelines or standards, so that paying an advisor doesn’t stop them giving their unbiased opinion. (I write this as the row about the government’s drugs advisory group is in the news!). Some, if not most, patient groups may need training to enable them to have a better understanding of research processes and needs and this training too needs to be funded. This resource issue was recorded as a key theme for the conference.
Another problem is shared by researchers and patient groups. How does a patient group get itself known about, taken seriously and consulted by the scientific community? And how do researchers know which group to approach if there are several to choose from? Think of the multitude of cancer charities, as well as several charities that cover or include miscarriage in their brief. How do researchers know which is most representative?
There are possible solutions here too. We need to work to keep The M.A.’s name in the forefront of the medical and research community, both within and outside the UK. We need to make sure that The M.A. is seen – and deserves to be seen – as informed, expert and unbiased. And we can support the PatientPartner project in drawing up guidelines and perhaps even a “gold standard” system to help them assess those patient groups that have the appropriate knowledge, expertise and understanding.
Earlier, I mentioned the costs of involvement in this area of work. So this is a good opportunity to thank the organisers of the PP workshop for supporting The M.A. by funding the costs of our travel and accommodation.
The Association of Early Pregnancy Units annual conference
The M.A. is a guest member of the executive group of the EPAU, and their annual conference is a must. This year’s event is taking place in Glasgow in November and is being organised by M.A. advisor Dr Marjory MacLean.
Marjory has put together an excellent two-day programme of presentations on the latest thinking, research and practice in early pregnancy problems (including a slot for The M.A. to highlight our work). It is a great opportunity to meet and talk to around 150 health professionals who have a real commitment to good care for patients with pregnancy loss. What’s more, we are invited to raise funds as well as awareness by selling M.A. Christmas cards.
I am greatly looking forward to the first meeting of the prestigious Early Pregnancy Clinical Study Group during the conference. As Roy Farquharson, Chairman of the AEPU, notes: “this group represents an exciting opportunity for us all to think of ideas to pursue in delivering better care for EPU patients and to improve standards”. I am delighted to be included as a lay member of the group, representing The M.A..
Research news
Method of miscarriage management does not affect subsequent pregnancy rates
Some of you may remember the MIST (miscarriage treatment) trial, where researchers compared surgical, medical and expectant (“wait and see”) management of incomplete or silent miscarriage. They concluded that there were no significant differences in risk of infection, and their findings were the basis of our leaflet, Management of Miscarriage.
One of the original researchers has now published, with two colleagues, a follow-up study* on pregnancy rates amongst the original trial participants. Dr Lindsey Smith was keen to see if, five years after the miscarriage treatment trial, the management method for early miscarriage had any effect on subsequent fertility, specifically pregnancy and live birth rates.
The results were clear. The live birth rate five years after the index miscarriage (i.e. the one included in the first study) was similar in the three management groups. There was also no significant difference according to previous birth history (that is, whether they had any other children). They did find that older women and those who had already had miscarriages before the MIST trial were significantly less likely to subsequently give birth. This was independent of the method of management and may have related more to factors such as age and the decision not to try again.
* Incidence of pregnancy after expectant, medical, or surgical management of spontaneous first trimester miscarriage: long term followup of miscarriage treatment (MIST) randomised controlled trial. Lindsey FP Smith, Paul Ewings and Catherine Quinlan. Published in the BMJ 2009;339:b3827, doi: 10.1136/bmj.b3827 (Published 8 October 2009)
“Air pollution may increase miscarriage risk”
News reports in October suggested that air pollution, especially from diesel fumes, may increase the risk of miscarriage. The reports were the result of a research paper presented at the October conference of the American Society for Reproductive Medicine, in Atlanta.
Dr Paulo Marcelo Perin, from the University of Sao Paulo in Brazil, reported results of research looking at the effect of diesel exhaust particles on embryos in mice. He reported that air pollution significantly disrupted cell development, and noted that this could trigger miscarriage.
His aim was to confirm previous research which found higher pregnancy loss among women undergoing IVF exposed to poor quality air. A UK doctor agreed that IVF cycles have been found to be less successful in winter, and that this might be because increased rain and fog bring pollutants down to ground level.
Clearly more research needs doing here to separate out the different strands in this information, including the focus on IVF patients and the possible difference in reactions between animals and humans. So far, the relationship between air pollution and miscarriage is not clear-cut and it may be that we need research to examine whether miscarriage rates in highly polluted areas are higher than in areas of low pollution.
In the meantime, most people who live and/or work in cities don’t have the option of avoiding diesel fumes, though many people would agree that air pollution and diesel fumes are probably not good for our health. It will be interesting to see if there is further research in this area.