Testing for Downs - Private vs NHS

[rainbowrosie]

I want to share this knowledge and try to get things changed in the NHS - and want to know what you think

I am 40yr pregnant mum - 2nd child - midwives have a couple of times mentioned the 1:100 risk of downs baby - and i would probably come back high risk if i did the nuchal /cubs test yada yada filling me with fear

I opted on NHS for the nuchal scan and cubs test - but i needed really quick results as i was leaving UK for a while and would be approx 17wks when i returned

I was so filled with anxiety by the midwives that i called a private hospital to chat with them ...For FREE over the phone a wonderful Consultant - called the Lab directly and got my PERSONAL risk Ratio of 1:9000

The NHS letter that came back said low risk but used the ratio less than 1:250 - to me 1:9000 is more reassuring

I would like to know why NHS patients do not get a more personalised risk - it surely costs no more to put in a letter or phone call.

I would like to know why the NHS patients are not offered the Nasal Bridge scan - which private hospitals can do - which discounts 2/3rds risk of Downs

Obviously i am still pregnant and i am still at "risk" of all sorts of things

But i would like to know why the NHS cannot make few simple alterations that would comfort expectant parents

Has anyone else had this experience

Don't know what is current procedure today but 6 yrs ago the private clinic I went to did more tests than the NHS one so the results were more accurate. Obviously there is a cost involved in doing those tests. I was happy to pay £150 for the reassurance as an older mum.

I had the nasal bridge scan on the NHS. So no

Well, my risk with DS3 was 1 in over 10,000. I found it quite a comfort, yet he was born with Downs, so it was pointless really, wasn't it?!

As it is, I am now SO glad I didn't know, as I may have decided not to have him, thinking I couldn't cope, not fair on existing children etc. However, that couldn't be further from the truth and he is wonderful and his brother adore him as they do each other.

Sorry, I thought the nasal bridge scan was standard on NHS. That is the main thing they looked at in my NHS scan although I came back as high risk as a result.

this is really interesting Midori you are right to point out that if you get involved in the world of testing then it does alter your experience ...

Pagwatch/ MollieO - am interested to know that the nasal bridge scan is on the NHS where are you in the UK - i am in scotland - so just curious - and it was not offered it was just the nuchal / cubs - i was essentially trying to avoid having to make a decision about an invasive amnio /miscarriage risk

I know plenty of women talking to them who have just opted out of the whole testing process and seems to give them peace of mind

Think i will just lie down and enjoy the pregnancy :)

Hi, I had my scan done while visiting relatives in London. The ultrasound and scan showed the nasal bone was present and the baby was developing as normal, however my blood results gave a different result and I had a 1:10 of downs. I flew home to OZ, had an amnio which gave a definite downs result. I will say this, all nursing staff at the hospital in London were amazing.

I had a Nuchal Scan with blood tests at a NHS hospital (part of a special high-risk team they have) but at the time it was a private procedure and cost £180 (now its free). I cant be positive but I'm sure they did the Nasal Bridge, my result came back as 1:17,000

Surely its like anything on ther NHS... service varies wildly depnding on where you are

it depends where you are in the uk (shit really) different health care areas pay for different tests so its a lottery on what you get

I'm in Berkshire. My private risk came back as the same as a 22 yr old. My then dp (now ex) said it was a shame I didn't have the body to match.

In this area they still don't even offer the nuchal scan, just the blood tests at 17wks (can't remember what they are called now) which are next to useless - apparently the scanning machines aren't up to it, but they are looking at replacing them at some point...

We paid privately for bloods/nuchal scan for DD, now 4 (I was 39 came back as 1:9,500) and bloods/nuchal/nasal bone (nasal bone wasn't available when we did DDs) for DS now 2 (by now I was 41 & it came back 1:26,000!) Both MUCH better than the odds based on my age alone (and proved to be accurate)

Testing isn't for everyone I know, it's very much an individual thing, but I needed it for peace of mind & was lucky enough that I could afford to pay for it (about £150 IIRC + 130mile round trip to the nearest centre...)

It's definitely a bit of a lottery what your local hospital offer. I remember my friend was offered the "new fangled" nuchal scan for free at her local hospital, her DD is 10 next birthday!

I'm an older mum who opted out of testing. The tests give a probability of having a child with Downs, but they cannot tell you how severe the effects will be for the child. Also as Midori found, there will be women that come back as low risk that still have a child with Downs - I know someone else that happened to. My friend was only 26 when she had a DD with Downs and was very low risk according to her test results. There are also many other conditions that are more rare for which there is no antenatal test.

Do wwhat feels right for you. For us, testing would probably have made us more anxious. Spending time with our friend's DD actually gave us a lot more peace of mind because we felt that were she ours, it would be tough but we would be able to cope. I think you need to do whatever you need to do give you peace of mind.

Congratulations and enjoy your pregnancy

It's another of the postcode lottery things. Our area offers a combined test at 12 weeks (nuchal scan and blood test combined with other risk factors). We received a letter giving our odds, which were fortunately very low. If it had been high then we would have received a call as soon as possible then been able to have an amnio or CVS.

It's crap that this isn't available in all NHS areas.

you can only get a risk anyway - as midori said.

i had some risky findings in pregnancy - didnt get the tests done other than scans etc- which ultimately - after some scares - said "all fine" . but would have been pointless amnio anyway as ds does not have down syndrome.

ds does however have significant special needs because of a microdeletion syndrome - which they have only been able to identify in last 5 years and in any case they wont look for on routine amnio chomosome analysis unless you already had a child with the condition... . maybe in futrue will be available

you CAN rule out down syndrome with testing amnio etc.
you cannot rule out everything.

and you cannot plan for the unexpected/rare disorders.

1 in 100 babies has some kind of special need - from a minor problem which can be easily rectified eg surgery eg my nephew's tongue tie - to something major.

you just wont know til it's born... sorri. 99 per cent chance aboslutely fine and dandy - small very very small risk something small - to something bigger. but when it is you the risk /statistics is meanlingless .

p.s. no regrets here - what will be, will be and what is, is.

I think the NHS should do as much non invasive testing as possible. People who get artificially high results because the have not had sufficient/personalised testing may then go on to have amnio, which carries a risk of miscarriage and causes unnecessary stress to people who are already anxious.

Yep, we don't even get the nuchal scan on NHS here either, just bloods at 16 weeks. I'm not indifferent to what you are asking for, but based on my experience, I think that first of all the NHS offering should be made consistent across all trusts, rather than some getting some things and others not.

Once that has been achieved/paid for then yes let's look at making it better for everyone.

D

The main issue is that the NHS offers a vastly different service depending on the area in which you live.

Where nuchal fold scans are carried out the nasal bone is often examined - but I don't understand what you mean by "discounts 2/3 risks of downs". Like the triple/quad test it is not definitive.

Which is where the other issue arises - none of these tests are definitive. You simply play the statistics - even with a very low risk the reality is someone has to be that 1 in x thousand as midori's post illustrates.

I thought the 1 in 100 amnio-miscarriage link had been virtually discounted due to flaws in the initial research?

I think 1 in 100 is the risk of miscarriage with CVS?

I didn´t have the blood test as I know I wouldn´t have dared have an amnio anyway.

nuchal scans (whether private or nhs) can only ever give you a risk and however reassuring you find the result someone always has to be the "1" (as Midori was). Yes it would be great if the nhs was consistent with what it offered but the costs probably outweigh the benefit and tests/scans can be obtained relitively cheaply privately should you have concerns.

So the main thing seems to be consistency across the NHS - i.e the postcode lottery rearing its head again
& i would have thought if the nuchal scan is available would make sense to scan for the nasal as well..but we did not.

I also took umbrage as i was told my a midwife that i could not get a scan privately (i asked due to time pressure) as they were not qualified to give me results - which i then found out to be totally untrue as the nuffield private hospital offers a full range of medical scans if i wanted to pay.

I think i was very sensitive this time as my experience of the midwives has not been positive - the first baby and midwives were brilliant - this time round i have just had poe faced people who simply throw statics at me as an geriatric mother! ...i.e risk of downs 1:100, risk of miscarriage from amnio 1:100..etc

Thank you for the responses its interesting area to talk about as its very emotive and personal & as folk have pointed out the stats can be wrong

mmm chocolate calling

merci
Me and my bump :)

rainbow rosie. It might interest you also to know that almost every single person I know who has a child with Downs had screening during pregnancy done without a second thought and also came back 'low risk'.

I was 27 when I had my son.

Where I am you can't get the full Nuchal screening unless you pay to go private. However I think it's worth mentioning that my SIL, who also lives here and has the same PCT, was recently given a scan at hospital and erroneously told that the nuchal fold was 'the thickest I have seen all yearn (4mm)' and was pressured to book a CVS the next week. When she told the NHS Sonographer that she had already made an appointment for the Private Nuchal (with bloods) she was pressured by the sonographer to not bother with it. She went ahead and was given a nuchal measurement a good 2.5 mm smaller than the NHS had given. When her blood results came back her risk was something like 1:1000.

I think some people have the scan and then bloods at 16 weeks on the NHS and really do think they are getting a nuchal screening test when really they are not at all.

might be something to do with law suits

midori good point. My DS2 who had Downs was a "low risk" (although I am afraid I cannot remember the number - certainly low enough for me not to give it a second thought)

In our area nothing till 21 weeks, no nuchal scan, no bloods.

Personally didn't bother me having had a friend in another area be given 1 in 25,000 and then have her baby born with Downs I knew that these tests didn't rule it out.

I accepted that I would love my baby no matter what and deal with what ever came along when it came along.