Campaign update | Action Medical Research

Touching Lives - February 2007

Campaign update

Tragically, around 1,600 babies die each year as a result of being born too early. Action Medical Research believes this devastating death toll can’t be allowed to continue. That’s why the Charity is working hard to tackle prematurity, and is calling on the Government to do more too.

Standing Up for Tiny Lives

Over 10,000 people showed they care about premature birth by signing our Stand Up For Tiny Lives petition, asking Government to double public funding for medical research into premature birth. Thank you to each and every reader who signed.The petition closed at the end of 2006.

Many who signed online at www.standupfortinylives.org left messages sharing their own very personal experiences of premature birth. These poignant, powerful messages convey the emotional toll of premature birth. They describe a parent’s worst fears, their greatest hopes, their deepest grief and, above all, their determination that more must be done to understand and prevent prematurity.

Many of the country’s most eminent doctors and medical researchers — paediatricians, obstetricians, neonatologists — also supported the petition strongly. They know, better than anyone just how little money is available to find the answers to this problem. One such expert is Professor Neil Marlow, President of the British Association of Perinatal Medicine and Professor of Neonatal Medicine at the University of Nottingham. He is grateful for the invaluable support of charities like Action Medical Research. “Neonatal care has dramatically improved the outcome for premature babies based on the results of good research studies. Further benefits are being hampered by this lack of funding, and were it not for the support of charities we would be further than ever from being able to understand the causes and possible treatments for prematurity.” Action Medical Research will continue to fight for vulnerable babies, and we believe the Government must do more as well.

Getting the Government to listen

We asked the Holdcroft family to hand the Stand Up For Tiny Lives petition in to 10 Downing Street on a chilly December morning. Now active toddlers, Edmund and Aubrey Holdcroft were born 15 weeks premature and it was touch and go whether they would survive. After their birth, father Martin Holdcroft wrote a web log for the Charity’s website, recounting the boys’ fight for life and the emotional rollercoaster of being parents to prem babies. Their story was previously featured widely in the media.

The Charity’s call to double Government funding into preventing premature birth also captured media attention in both December and January. We used a law called the Freedom of Information Act to unearth figures on current Government spending. This Act gives individuals the right to see information held by public sector organisations, within 20 days of the initial request.

Freedom For Information

Our ‘Freedom For Information Request’ was made to the Department of Health, asking how much the Government spent on medical research to prevent premature birth during 2004-5. The official written record of Parliamentary business (The Hansard) had provided some, but not all, of the figures we needed, so using the Request we were able to ‘fill in the blanks’.

We also commissioned an opinion poll, to find out how much the public believed the Government spent on tackling prematurity, and how much they’d like the Government to spend.

Armed with this and the Department of Health figures, we were able to show that:

 In 2004-5 the Government spent £3.7m on research into preventing premature birth — less than 0.3 per cent of the total Government medical research budget

 The public believed the Government spent 12 per cent of its medical research funds on tacking prematurity, and wanted 24 per cent to be spent

Andrew Proctor (the charity’s Communications Director), Professor Neil Marlow and Fiona Currie (Action Medical Research supporter and mother, who lost her daughter Lauren to complications from prematurity) were widely interviewed, on the BBC Breakfast News, BBC News 24 and on radio.

In response to our announcement, the Department of Health issued a statement saying the Government committed £6 million to medical research in this area in 2004-5. We believed this was wrong, so used another Freedom For Information Request to ask the Department of Health to explain the discrepancy in the figures. The Department subsequently replied to say sorry, they had got their sums wrong, and that Action Medical Research was right all along.

Following the petition and surrounding media publicity, Action Medical Research called for an urgent meeting with Lord Hunt, the health minister who has responsibility for medical research. We will continue pressing the Government to give higher priority to a problem that kills more babies than anything else and is a major cause of life-long disability. And we will work harder than ever to raise much needed funds for the Touching Tiny Lives Campaign.

Closing in on the causes of premature birth

Thanks to the generosity of our wonderful supporters, we have raised over £2 million for Touching Tiny Lives so far, and have begun funding 24 new projects, researching different aspects of premature birth, pregnancy complications and infant health. Each one of these projects offers real hope of improving prospects for sick and vulnerable babies. Here is a flavour of some of that research.

Premature birth

Reducing the risk of premature birth is vital, but very little is actually known about why some babies are born so early. The Charity is tackling the problem of prematurity in a number of different ways. Several of our research teams are looking at whether infection and inflammation could be triggers for premature labour. Once labour has begun, there are no effective treatments for preventing an early delivery. If doctors can identify the causes of premature labour, we will be that much closer to finding ways of preventing babies being born too early.

Understanding the risks

Women from deprived areas are at increased risk of giving birth early, but no-one knows why. In one of our latest studies, taking place at the University of Leicester and Leicester Royal Infirmary, researchers are conducting a large-scale survey to identify factors to help explain the link between deprivation and premature birth.

Life can be very tough for disadvantaged mothers who give birth early. Many premature babies spend months in intensive care, battling for life, many miles from home. Even just visiting the baby is difficult if you’ve got no car and there are other small children to look after. The ultimate aim of this work is to eliminate the rich-poor divide in the risk of premature birth — read more about it on page 12.

It’s vital that we reach our £3 million target to complete our research programme. Please keep up the good work! TL

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