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Scots Mothers Lose Out on Down's Baby Test

Posted on: Saturday, 15 January 2005, 09:00 CST

PREGNANT women are travelling to England to pay privately for Down's syndrome tests because free screening is not available in most regions of Scotland.

Despite the recommendation that all NHS boards be able to offer a nuchal fold translucency test at the first pregnancy scan, anxious mothers are paying almost GBP 200 for the service at private clinics south of the Border as their own health boards refuse to foot the bill.

The test can be carried out at ten to 14 weeks to identify the risk of foetal abnormalities such as Down's syndrome.

Last night, NHS insiders said most Scottish hospitals had neither the staff nor the equipment to provide the service, and it would be years before all women in Scotland were offered the scan. "It's a post-code lottery depending on where you live," the source said.

"We don't have the infrastructure or the staff to do the scanning and it will take at least seven years before things are put right. We'd love to provide every woman with this screening but the government just hasn't put anything in place."

An investigation by The Scotsman has found that only one Scottish hospital - the Queen Mother's in Glasgow - provides the nuchal test, leaving many women with no choice but to turn to the private sector.

Dr Rajasekar Dhanasekaran, a consultant obstetrician in Dumfries and Galloway, said that up to ten women each month were being referred from his hospital to private clinics, often in England.

He said: "We don't offer it in Dumfries, it's on a private basis and the women are referred to Newcastle or elsewhere. The policy is that patients have to pay for it themselves.

"In England, some of the hospitals offer it routinely. They have better facilities. In London in particular, there are hospitals that offer free nuchal scans."

Edinburgh-based Health Care Now is one of the few private clinics in Scotland to provide the test, at a cost of GBP 190.

Stuart Devine, the company's commercial director, said that demand for the service has increased dramatically as more expectant mothers become aware of what is available.

He said: "We have dealt with hundreds of patients and we get up to 20 people a week. Demand is increasing and we were so busy we had to stay open over Christmas. A lot of these women have done their research and they know that this type of screening is available.

"There is a chronic resource shortage of obstetricians in the Lothians and they are not in a position to offer the service."

In the UK, one baby in every 1,000 has Down's syndrome and a recent report suggested all pregnant women should be offered screening for the condition. The ultrasound scan, which measures the fluid-filled space at the back of the baby's neck, can identify two in three Down's pregnancies. Many doctors prefer the test as it is done before 14 weeks, giving women the option of a termination early in the pregnancy.

"We've sent women to London and Newcastle for the tests because it wasn't available in their area," explained a midwife in the west of Scotland.

"The nuchal test is more accurate at detecting Down's and less invasive. It's a way of avoiding amniocentesis, which carries a risk of miscarriage."

Most NHS boards in Scotland only offer blood tests to identify the risk of abnormalities at 16 weeks, but experts insist they are not as reliable as the nuchal fold test.

Down's is the most common form of learning disability. Most cases happen by chance, although there is a small number of cases where the condition is hereditary. The chance of having a baby with Down's rises with a woman's age, although more babies with the syndrome are born to women under 30. The risk of having a baby with Down's syndrome is about one in 1,500 at age 20, increasing to about one in 100 at 40.

Without nuchal screening the patient may need an amniocentesis test, where a needle is inserted through the mother's abdomen into the amniotic sac to take a fluid sample. The results can take up to four weeks and it carries a risk of miscarriage. By the time a woman receives her results, she will be at least 20 weeks pregnant, and the decision about whether to abort the baby would be more traumatic.

Sharon Nimmo, an Edinburgh mother, was furious when she was refused the test on the NHS, despite having a family history of the condition. She said: "My brother has Down's so I couldn't believe it when they said I would not be tested. I paid for it privately but some women can't afford to pull out that kind of money.

"It's outrageous that if you live in one part of the country you get this free on the NHS, but if you live somewhere else you're denied it."

A spokesman for the Scottish Executive said there were obvious benefits to the test but there were no immediate plans for its introduction in Scotland.

He said: "NHS Quality Improvement Scotland has recommended that all NHS boards be able to offer nuchal fold translucency testing at the first pregnancy scan (ideally at 11-13 weeks).

"There is clear merit in doing so and we are liaising with the National Services Division on the best way to take forward a review of these services," the spokesman said.

Four years ago, the Department of Health said that all pregnant women would be offered antenatal testing for Down's syndrome by 2004, but now the target date has been pushed back for a decade.

A spokeswoman for the department said: "A number of hospitals in England and Wales already offer nuchal testing.

"Hospitals are working towards the goal of having these tests. Some are further on than others."

KEY METHODS OF DETECTING ABNORMALITIES

Nuchal fold test

Available at ten to 14 weeks. A nuchal translucency fold scan, which measures the fluid-filled space at the back of the baby's neck, can pick out two in three Down's syndrome pregnancies. It can highlight degrees of risk before a diagnostic amniocentesis test is offered by picking up structural abnormalities. The scan uses ultrasound to measure the thickness of folds in a developing baby's neck - the thicker the fold the higher the risk of Down's syndrome.

If results of the scan show a high risk then women can opt to have an amniocentesis.

* Amniocentesis

Usually performed at 16 weeks, a needle is inserted through the mother's abdomen into the amniotic sac to take a fluid sample. It carries a risk of miscarriage for one in 100 women. Results can take four weeks. By that time the woman will generally be at least 20 weeks pregnant, and the decision on whether to abort the baby can be traumatic.

* Blood tests

Blood is screened for two or four chemicals (double and quadruple test). An "integrated test" can be combined with an ultrasound in the first trimester.

Source: Scotsman, The

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