Nuchal fold - how can I check it will be carried out correctly?

[WideWebWitch]

Hi, I hope someone can help. I want a Nucal Fold scan and so have booked one at the Nuffield hospital in Plymouth. They aren't available on the NHS here so I have to pay £180.00 (my sister only paid £130 in Harley St so it's galling but there you go). Whilst ringing around to see if I could get it any cheaper anywhere down here (in Devon) a midwife at a large local hospital with a big maternity unit told me they won't recommend the Nuffield in Plymouth since the tests aren't carried out properly and don't use the correct computer program. This hospital sends people to Bupa in Bristol instead. Well, since I don't know what the hell she's on about, I can't know whether she's right or wrong, but how can I check? I called the Nuffield and said "hey, a midwife at xxx hospital says you're crap, are you?" (well, not exactly but YKWIM) but not surprisingly they say they're not. They say their test results are sent to Barts and are fine. But I am still wary - this is a large hospital refusing to refer to the Nuffield which is definitely the nearest in the area. How am I supposed to know whether this will be £180 well spent or whether I'd be better off trekking to Bristol or London? Any ideas?

[Jzee]

I had my scan done in London for around £150.00 near Harley St. I was also naive to these things as well and worried about where I was going, but later found out that the Professor was apparently a founder of scanning technology. I even got to see the baby in 3D. On memory there is a web page somewhere listing registered clinics.

[sykes]

Not sure if this is any use, but ... I've had three nuchal folds - two privately and one NHS. The private ones were done at the Fetal Medicine Centre on Harley St, the private arm of the Harris Birthright Centre, Kings College, London. Professor Nickolaidas (wrong spelling) is, I THINK, v eminent/the founder of nuchal scanning and the Fetal Medicine Centre (www.fetalmedicine.com) is v much at the forefront of training for NHS/private scanners. Look at the web site and see what you think - also, do phone them and get some advice - I've found them v helpful. I do realise they make money from the training/private care but there is also an awful lot of charity work and I've found they've given me great advice and, based on results of the nuchal scan plus blood tests - NOT AAA tests which can confuse if you combine with a nuchal scan - have been v upfront about not bothering with an amnio. Sorry if a bit muddled.

[WideWebWitch]

Thanks Sykes, yep, this is where my sister went so it could be an option if they've an appointment free when I'm 12 weeks. But if Devon place is OK, I'd rather drive for 40 minutes than 4 hours!

[sykes]

I think they may have a list of recommended centres so it may be worth looking at the web site/giving them a call. Hope it goes well - must say the scanning equipment is amazing but agree it's not easy to get an appointment and rather far to go.

[grommit]

My GP referred me to a clinic in St Albans: www.nuchal.com. The cost is £120 and the GP assured me that this clinic is recognised. I have booked my appt

[rainbow]

Not sure what you mean by Nucal fold. I had a Nuchal Sac scan at my local hosp with ds2, which showed evidence of odema, Down's was a possibilty so I was referred to Kings College and the Harris birthright trust and as with Sykes saw Prof Nicholaides (not sure on spelling) I had two heart scans and two anomaly(spelling?) scans I had al ready decide on no amnio (only 59% accurate with Down's) but he was fine. "1 months later, I had another Nuchal Sac scan with ds3 only this time they combined it with the AFP blood tests to decide on whether you are at greater risk of Down's as Nuchal Sac isn't very accurate on it's own. Not sure if this is the same thing but thought I tell you anyway!

Bit long winded but never mind, keep

[rainbow]

That should read 21 months not "1 months. Oops

[elliott]

www, my understanding is that nuchal screening is fairly operator dependent and so the more experienced a centre is, the better their results will be. Can you ask how experienced the scanners are at the Nuffield? (i.e. how many nuchal scans they do per year?)
Other than that I don't really know what to suggest - except that if you're going to all this trouble and expense, its worth making sure that you will get a good job done, even if it means travelling. Can you ask your GP for a recommendation - or better still, ask the GP to find out from a local consultant where they would recommend?

[sykes]

Sorry to barge in but is a nuchal really only 59% accurate re DS? My consultant (not in favour of nuchal scans) believed it was about 75% accurate. I thought about anomaly scans but because of the nuchal scan didn't go any further. Just interested

[NQWWW]

I went to the Fetal Medicine Centre too, and found it excellent (I think the spelling is Nikolaides) and would thoroughly recommend making the trip if you have any doubts about your local facilities. They now combine the scan result with blood test result and the combined risk factor is supposed to be more accurate because of this. They also look for the presence of a nasal bone, the absence of which can be an indicator of abnormalities according to Prof Nikolaides' latest research. If you don't want to travel to London, I would contact them and see if they could suggest somewhere locally to you.

Incidentally, if you take a blank video tape with you, they will video the whole thing for you.

I'm sure I saw some figures for the success rate in prediction of DS by nuchal scan somewhere - may have been on another thread. In any case, case its only an indicator.

[leese]

www- I can vouch for the quality of the nuchal scanning at the Bupa in Bristol - but nowhere else I'm afraid.
Does the Nuffield offer the OSCAR test for £180 or just the nuchal scan? In Bristol you can opt to just have a nuchal scan, which costs around £110, or pay £180 and have the OSCAR, which is a combined nuchal scan and blood test. Maybe your sister paid £130 just for the scan, whilst the Nuffield charges the extra as it incorporates a blood test?
The Bupa in Bristol quote a 80% accuracy rate with just the nuchal scan, and a 90% accuracy rate with the combined test.
It would certainly be worth checking exactly what you are paying for - £180 does seem rather steep if that is just for the scan itself. For the same money you would be getting the combined test elsewhere. Good luck ...... and if you need directions to the Bristol hospital, let me know!

[WideWebWitch]

Thanks everyone and good tip NQWWW about the video, I wouldn't have known that. I've booked with the Fetal Medicine Centre in London and cancelled the Nuffield. £180 does cover the scan and the blood test at the Nuffield, but so does £130 in London (i.e it pays for both)! Incredible isn't it? Even taking petrol costs into account it's cheaper to go to London. Thanks everyone, really appreciated.

[sykes]

Lots of luck. I must, say despite it being a worrying experience (two previous missed abortions etc), I did enjoy the scans - hope that doesn't sound weird or offend anyone.

[NQWWW]

If you're thinking of driving all the way there, look out for the congestion charge - I think Harley Street is just in the zone.

[zebra]

WWW: I think you should phone the Nuffield hospital, and tell them what you've been told. Ask them why it is that their computer program is supposed to be bad? Be direct about it; put them on the spot. They should be able to give you an explanation to help you decide.

Even if you still go to the Nuffield, you can just ask them, "how thick is the nuchal fold?". They give you the number and you can research for yourself what the reduced risk is. I'm pretty sure that less than or = 1.2mm is the lowest risk category, 1.2-1.3mm is only slightly reduced risk. And above 1.3mm starts to be increased risk, but you can find out all the exact % risk reduction numbers to correlate with each thickness value, on the Internet.

Sykes: I'm guessing 75% detection rates is probably about right.

I'm not expert, but have tried to read everything I could about nuchal fold on that unreliable source, the Internet....
The Harris Birthright trust claim that the nuchal fold detects >= 85% of Down's cases. Most clinical studies indicate something like 80% detection. There is a long series of arguments on the British Medical Journal website to the effect that the studies these statistics come from have statistical bias. So some allegations that the likely accuracy is no more than 50-60% detection. On top of that, there is some skill in how the nuchal fold thickness is measured, that would distort the true detection rate.

Being cautious, personally, I would assume the 60% figure unless I was getting the test done somewhere where I reckon the staff should be very well trained. 60% risk reduction is still very good, and from a purely statistical viewpoint, a solid basis for not proceeding to an amnio for all but the highest risk mothers.

[cos]

Zebra, asking them thier measurement wont work, once you have the measurement the calculations are standard, itd getting an accurate measurement which is operator dependent and so important. i would have an NHS scan somehwre they do lots of these type of scans and pay for it privately

[zebra]

Yes skill comes into it -- but I got the impression WWW was specifically told it was the computer program the hospital was using to calculate the statistics, not operater skill in measuring, that was questionable.

[Gilli]

Wickedwaterwitch -hope this helps. I would say if you are going to pay, go to The fetal medicine centre in London run by professor Nicoliades. He is the world's leading expert in the field of fetal scanning, and is in charge of the King's NHS unit that is regarded as the world's best. The income from fees at the Fetal medecine Centre (about£120) fund the charity at King's. I had a Nuchal scan, followed at 18 weeks by a full abnormality scan. I cannot stress how expert his team is, and they explain EXACTLY how the risk is assessed. The nasal bone reference is correct: his team have recently discovered that the absence of the nasal bone in early pregnancy is a possible indicator of Downs. However, if you are having a Nuchal scan at a NHS hospital, Nicoliades' team should have been responsible for the radiographer's training, so in theory you should recieve just as high quality care. Not sure about other private hospitals though. If it helps, I was 41 years old, and had an age related risk of 1/65 that went to 1/350 post scan. HIH Good luck whatever you choose.