Screening for Down's Syndrome

[YuShuLien]

My local NHS Trust has chosen to ignore government guidelines regarding antenatal screening for Down's Syndrome. The current test offered is an outdated, inaccurate test called the Triple Test. The newer tests should have been introduced in April 2007 but the Trust has chosen not to implement them until October 2008. The implications are that a significant number of pregnancies affected by Down's Syndrome will NOT be detected. In addition, a significant number of pregnancies NOT affected by Down's Syndrome will be given a FALSE POSITIVE result. Most of these women will then go on to have an amniocentesis, which carries a 1% risk of miscarriage. The Trust's decision not to implement government guidelines therefore puts pregnant women at unnecessary risk of medically-induced miscarriage. The test is available locally, but only within the private sector, at a cost to the patient of approx. £200. Despite outsourcing numerous other medical and surgical procedures to the private sector in order to meet waiting list targets, the Trust chooses not to purchase antenatal screening services from the private sector. Pregnant women are thus the subject of discrimination by the local NHS Trust (Sex Discrimination Act 1975). Women of lower socioeconomic status are subject to further marginalisation, being less likely to have the information and resources to fund private tests. This situation is not unique - it affects women nationwide. The only way to bring about change is through public pressure. Please discuss this with your families, friends, midwives and GPs and share your thoughts.

Women do also have the choice of refusing all ante-natal screening for Down's Syndrome.

What is the newer test called? My health authority offers the triple test too and I thought that this one was the newer one (hastily goes away to google testing options)

which local trust?

what are the current government guidelines and what has replaced the triple test?

and surely a guideline is just that, a guideline?

AFAIK, no blood test will be 100% certain, as it is just what it says it is, a screening test. This should be taken into consideration by all women in pregnancy and the decision to have the test or have further invasive tests based on individual risk factors.

some trusts now do a nuchal scan at 11 weeks, but here in Leeds you have to pay to have it done privately (and combined with additional blood tests, the full range of tests is around £200). There was a leaflet issud with the booking in-notes to this effect and the information was available to every woman, regardless of her socio-economic group. I assume your trust will provide this information at booking in as well.

Personally I chose not to have any testing done as I'd had two miscarriages; my DH and I wanted to carry on with the pregnancy regardless of the outcome.

I'm afraid it all comes down to the good old NHS postcode lottery I'm afraid.

I think that the triple test is being replaced by the combined test, so the bloods combined with the nuchal test result? That's what they do at my local trust here in London, but I know that I was incredibly fortunate to have this as it isn't common, I don't think, nationally on the NHS.

But, the combined test can also come out with a false positive result as well because all you get given is a risk assessment, which could be high because of other factors, like age and weight, and not necessarily due to anything being wrong.

I recently had a private nuchal and quite honestly i can see why the NHS dont do it as standard, it took about 3/4 hour to get the baby in the right position to measure the fluid on the back of the neck. they could never do this for EVERY pregnant woman, the cost of time would be far too great. The results still arent guaranteed either. i paid £180 and i am pleased i did as i had great results but i can really see why the NHS cant do it.

I expect that your Trust hasn't 'ignored guidelines', but rather weighed up the pros and cons of offering additional screening, and made a decision based on wider information than you seem prepared to consider.

I won't be discussing this with the people you suggest, as we will be refusing all Downs screening, just like we did last time.

I also refused screening
Our trust also offers the triple test - it's up to you to decide whether you want this or not

With my first pregnancy a nuchal scan would probably have picked up the fact that my son had a fatal trisomy disorder. I did not find out until much later on, I would have preferred to have known earlier. With my subsequent pg I paid and had one privately as I was much more aware of the risks. I felt fortuate that I could afford to pay. Not everyone can.

The guidelines are set down by the National Screening Committee (there is a website if you google for it) - so yes, guidelines have been ignored as the only tests which fulfill the guidelines need to use a nuchal scan as part of the test (combined with blood markers either at the same time as the scan, or combined with serial blood tests at 11ish and 16ish weeks gestation).

our local trust offers the triple test but you have to pay for the nuchal privately (we paid £180 also). i think this is the case most places up and down the country - is it nott

I refused all tests too as it wouldn't have affeted my decision.

I live near Edinburgh and you don't even get a 20wk anomaly scan on the NHS if you live in Edinburgh or surrounding counties! So no chance of knowing if your baby has any internal problems etc until it's born. This is apparantly due to lack of facilities but every time I have been for a scan it is totallly quiet- maybe one other pg woman there. Whereas when I lived nr Chester there were always about 30 people waiting!!

soph, I had my DS in Edinburgh, and I was amazed when I found out I got another scan here in Leeds with DD.

NHS Down syndrome screening guidelines if anyone wants to see them.