Pregnant women denied key Down's test

PREGNANT women are being denied a key screening test which can reveal their likelihood of having a child with Down's syndrome.

Health watchdogs in Scotland recommended seven years ago that an ultrasound scan which looks at certain measurements in the developing baby be offered to all women alongside a blood test to estimate the chances of having a child with the condition.

But the test is still not routinely available in large areas of the country, even though the Scottish Government gave health boards millions of pounds three years ago to prepare to have it in place by March this year at the latest.

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Some women are so concerned that they are paying 230 to have the scan undertaken privately to try to avoid more invasive diagnostic tests which can cause miscarriage.

Campaigners and health experts described the slow delivery of the service in some areas as unacceptable. The Scottish Government said it expected areas not offering the scan to do so as soon as possible.

In February 2004, NHS Quality Improvement Scotland published advice on routine ultrasound scanning before 24 weeks of pregnancy, recommending that a combined blood test and ultrasound measurement be offered to help predict the chances of Down's syndrome.

This measurement - known as nuchal translucency - looks at the amount of fluid under the skin at the back of a baby's neck. The more fluid present, the greater the likelihood of Down's syndrome.

Combined with the blood results, the nuchal translucency test is thought to be more than 80 per cent accurate at identifying those at high risk. But despite the benefits clearly outlined seven years ago, most boards in Scotland did not start offering the test to all women until earlier this year. In some areas, it has still to be rolled out.

One is NHS Greater Glasgow and Clyde - Scotland's largest health board, accounting for almost a quarter of all the country's births - which says it has no plans to do so until the end of this year at the earliest. NHS Dumfries and Galloway is planning to offer a full service next month, while NHS Western Isles hopes to introduce the test by the end of the year.

Health experts said the combined blood test and nuchal scan, which has to be carried out between 11 and 14 weeks of pregnancy, has clear benefits over the current blood test, which is not carried out until 15 weeks.It can take two to three weeks for the results of this test to be returned, meaning women could almost be halfway through their pregnancy before they find out if they are at risk or not and require further diagnostic tests.

Not all women who receive a Down's syndrome diagnosis will require a termination on moral grounds. But if a termination is required, it will therefore not be done until late into their pregnancy, causing added distress, some experts argue.

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Patrick O'Brien, spokesman for the Royal College of Obstetricians and Gynaecologists (RCOG), said: "This (nuchal translucency] is a better test - it is more accurate and it is also done earlier in pregnancy," he said. "If you are found to be at high risk, this paves the way to have an earlier diagnostic test and, if required, an earlier termination."

Without the more accurate test, some women may be more likely to go on to have invasive diagnostic tests, such as amniocentesis, which has a 1 per cent chance of causing a miscarriage.

Gillian Smith, head of the Royal College of Midwives in Scotland, said she was shocked that there were still parts of the country where the test was not offered to all women. "It is a bit of a lottery," she said. "I would hope there is not a financial imperative in not providing it because there are all these savings that need to be made."

Belinda Phipps, chief executive of the National Childbirth Trust, also expressed surprise that parts of Scotland were still not doing the nuchal scan. "I find it amazing that they can't do this. There is a recommendation that there is a scan at this stage, so what's the problem?" she said.

NHS Greater Glasgow and Clyde said staffing problems had caused the delay, with staff trained to carry out the nuchal scan leaving and new employees having to be trained. It added that women who had a high likelihood of having a Down's syndrome baby were offered the scan. A spokeswoman said: "We are fully committed to delivering nuchal translucency scans to all women in our area when staff complete their training."

A spokesman for Healthcare Improvement Scotland said: "In 2004, our predecessor organisation recommended that a nuchal translucency scan should be offered to pregnant women. We identified clear evidence that such a scan would be beneficial to mothers in identifying abnormalities."

A Scottish Government spokesman said: "The vast majority of Scottish health boards provide nuchal translucency scans, and we expect others to follow as soon as possible."