Nuchal fold tests - did you have to pay for yours? Is it just a postcode lottery thing?

[KIQFTM]

Hi

I'm a regular poster but am just keeping things under wraps for a bit.

I'm 8 weeks pregnant and 40. It seems my local health authority don't do nuchal fold tests/scans. In fact the people I have spoken to all seem rather vague about it and almost surprised that I've asked. So far, I've pretty much been told I need to organise it myself. Is this standard throughout the UK? Have heard some health authorities do them routinely or will based upon your age. Is there anyway round it or am I just stuck with having to pay if I want it done.

Really, really not sure what I would do regarding results, just exploring all avenues at the moment

TIA

we get routine free dating scans at about 12 weeks here, and then the 20 week anomaly scan, but you're right, the 12 week scan is not the nuchal scan which we have to pay for.

Just having a vague memory that I was advised to just do ONE test i.e. nuchal scan OR bloods as two different results could give conflicting info.
Does that sound plausible to anyone else?
I'm almost certain that the nuchal scan is more accurate and that's why I went for it instead of relying on blood tests.
I could be completely wrong as my post-natal memory is still a mush.

I had a free nuchal fold and dating scan at 12 weeks because the hospital was a low-risk unit. They didn't have the (on-paper) resources to deal with potentially difficult births so they had to recognise them early on. I think they are great, the relief when you get a low risk is wonderful. On the other hand, if I'd gone to the obvious choice, big, local hospital I wouldn't have got a 12 week scan. You need to find a private hospital, KIQFTM. There is a place in London called the Create Health Clinic that does 3d scans that are supposed to be amazing.

Hi Rowlers - I was advised yesterday that as I had had the nuchal test not to have the triple blood test (offered routinely) as they sometimes throw up conflicting results and nuchal is more accurate. I was told this by the consultant - so I can only assume it is correct.

I was 32 in and in Tower Hamlets Health Authority (East London). They didn't provide NHS scans, I did ask. I paid £100 for a private one, and it was negative. I was told that patients only needed bllod tests IF the scan was not a definate no. The 1st dating scan I could have had on NHS was at 18 weeks as they had a long waiting list. I'm glad I had the scan as you get a long time looking at the baby and it made the pregnancy 'real' to me. Friends same age in Berkshire and Kent got theirs on NHS.

I live in Scotland and had to pay for mine (£170 ish)- but it was well worth it - I am 38. Also I only got a 12 week scan, no comforting 20 week look at all the bits and pieces!

I was 32 when expecting ds in nov 2001 and I had to pay for mine (I'm on the herts/beds borders) but they were relatively new then. Hoping that next time round they may be free! Would definitely say to have one - the peace of mind is great, esp as it's non invasive and early enough to do something about if that's your decision.

Official NHS guidelines spelling out what scans and antenatal care should be offered to pregnant women are here:

guidelines

They say that you should be offered screening for Down's in early pregnancy but that can be either:

at 11/14 weeks a nuchal fold test or combined NF and ultrasound and blood test

at 14 to 20 weeks a triple or quadruple test (see the guidelines for explanation of these

I think the issue is that not all sonographers are trained to do nuchal fold tests. But use the guidelines to insist that your hospital or primary care trust offer you the care to which you are entitled. Good luck.

Thought they were all free -I had one at 25 with DD - in Essex and it was free and so was CVS afterwards and then one in Kent/SE London with DS at 29 and again CVS afterwards at Kings.

Hi, I had mine free at Kings,in Denmark Hill, they said it was up to me if I wanted to have one or not. The other scan was at my local hospital at 22 weeks.

I'm surprised the availability is still so variable. I had one at East Surrey both times (Sept 1997 and January 2001). It was routinely offered to all mums to be as part of the 12 week scan but further investigations were referred to King's, I think.

I had the nuchal fold scan 3 years ago at Kings in London, didn't pay, was referred by my GP (in Surrey). It was age-related as I was 39, not something offered routinely to all pregnant women by the GP.

Had one done for this pregnancy - am 33. Under the care of the West Mid in London

but test done at Kings

Hope you don't mind me jumping in here? I think it's definitely a post-code / health trust thing. I had my first in London and could have had one free at UCH (aged 35). Now living in Beds and expecting 2nd in February. Having had 3 misscarriages since first the sonogropher at 9 weeks recommended I had a nuchal but then said I would have to pay and organise it for my self - ended up travelling into London. In Beds you don't get one free unless you are 37 or over on the date of conception. I've also been told by a friend who lives in Herts that her health trust don't pay unless you are 40!

Paid 180 to go to Harley St. Lived in Devon (Torbay) at the time and they didn't allow a free one although apparently Exeter do. Outrageous isn't it?

I live in Leeds and had to pay for the Nuchal Fold test (2 years ago) - you also needed to book it virtually before you knew you were pregnant in order to get onto the list! We were told (husband being 'in the business' to some extent that it was combining the info from the triple test (actually 4 tests) and the NF that led to the greater accuracy. For what its worth, if you need to consider Amnio/CV, St. James do lots of CV's so as I understand it the added practice reduces the associated risk somewhat, and since it can be done earlier than the Amnio, that is what I was thinking of I came out high risk doe Downs syndrome.

My local hospital doesn't do Nuchal fold tests. I asked last year when we went in for our first scan.
They did say though that when doing the scan they look out for increased fluid at the back of the neck etc. But they don't have the official computer programme to do the actual Nuchal test.

I'm in Scotland and the nearest Health Authority to me that does them is Glasgow which is over 60 miles away and I'm not sure if I would have had to pay to get one done there had I wanted it or if it would have been done on the NHS.

They've been doing them at my local hospital (in NW Surrey) for years, ever since they starting doing dating scans - I was offered it when I was pg DS2 in 1993.

I think the issue of variability across the country is sonographer training, and it's probably a lot easier to train the ones who can easily get to Kings.

It seems a bit off that NHS hospitals are making you pay for it, when it's just another measurement they take alongside head circ, femur length etc.

Thanks so far everyone. Anyone else?

Yes, the variation does seem to be based upon how near sonographers are to London. Hmm, that's fair.

I can understand, maybe, there being some cut off point - only available to over 35's but I'm positively geriatric.

Yes, shall contact MP about this.

its not just a case of paying round here - you also have to travel over 100 miles to a hospital who can do it!

Hi KIQFTM, I decided to come over to this thread...much more positive.
I was 37 when I had my ds and 39 when I had my dd. I had my ds at St.Mary's in London and they offered me an amnio straight away with the possibility of having the triple blood test. I had the blood tests done and the results were fine and since it was a bit of a miracle (or so we thought) that I got pregnant, I didn't want to take the risk of an amnio. However, when I was pregnant with my dd, I was at Queen Charlotte's in London and they didn't offer the blood tests, just the nuchal fold scan. (The advantage of the nuchal fold is that it's done earlier than the blood tests or the amnio. However, if you have the st. barts triple blood tests plus nuchal fold, that's done over a period of several weeks (i think) and is supposed to be the most accurate.) After researching the nuchal fold online (lots of info there), I began to question its reliability at predicting ds. It seemed to be quite good for spina bifida, but I decided that I was not particularly concerned about spina bifida in my case (good diet, lots of folic acid) and more concerned about ds because of my age. So in the end I decided to have an amnio as well. Also, since I had absolutely no trouble getting pregnant, I was less concerned about the risk of the amnio.

One thing I have to say is that for both pregnancies, the midwives that I saw were spectacularly uninformed about the blood tests/nuchal fold tests/amnios and genetic diseases. I had to demand a test for Taysachs (sp?) which is a genetic disease particularly common in ashkenazi jews. Despite the fact that they had a poster encouraging testing for it in the waiting room, they knew nothing about it and had no information about how I was supposed to get the test done...ended up doing all the research myself. I would recommend demanding an urgent appointment with your consultant who you don't actually see unless there is something wrong. (there should be one that you are officially assigned to ...at least that's how it is in london) Also, both hospitals that I gave birth at, had a genetic counsellor who was there specifically to give advice on these types of things. It might be worth insisting on speaking to one...even if there isn't one at your hospital, there should be one that you can speak to.
Basically, I wouldn't take your midwife's word for it that you are not entitled to some sort of genetic testing during your pregnancy.

My local health authority routinely asks all pregnant women if they want to be referred to the Harris Birthright centre at Kings Hospital for a nuchal scan, for free. Everyone I know had this scan. It's because, for research purposes, they want a broad cross-section of foetuses to scan, and our HA has an agreement to provide "subjects", I think. Was a fantastic experience - the quality of the scan knocked the socks off the 20 week scan at my local hospital, and Dr Kypros himself did mine! What a star!

It took so long to see my GP to be referred to the mdwifery services that I was almost too late to even get a nuchal fold appointment if I wanted one. Had to have it totally private or not at all and when i phoned up they told me that they "could squeeze me in" the next day at nearly £200. I didn?t want to be squeezed in at that price and decided not to bother. That was last year and now have a gorgeous baby girl. Glad I didn?t waste the money but easy to say that in hindsight now.

pooka, very interested in which authority you are in and how to get myself referred to Kings for this as I live in West London. Do you think being 38 will help?
Does anyone now how much it is to pay at Kings?