Down's Screening - Been told no point having blood test?

[AngelUK]

I hope you do manage to complain to someone and that something gets done. I would totally write to your MP when you are ready to tell about your pregnancy. This surely is a cause that should be looked into! I can sort of accept that your postcode area doesn't have the facility but then I would expect that they refer you to a near-ish hospital where you can have it and that it would be free. It is outrageous that you have to pay such a sum! And why on earth would she tell you to look in Leeds when Preston is so close? In fact I am surprised that something that close wouldn't take up screenings for your area anyway.
I am outraged for you and I really hope you get it sorted somehow. Good luck! xxx

 

[Sarah27]

Think its a bit rubbish tbh! There are many over 35 ladies who have got a low risk test result based on bloods, age and nuchal.

Our DS test came back 1:5 so obviously high risk I am 28 too.. Nuchal was okay, slightly higher than average at 2.7mm it was my blood test part that made me such a high risk...
Its all parts of the test that are looked at and used to figure out the risk. Not just one part of the test.. xxx

 

[jo14]

i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx

 

[LancyLass]

i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx

I see you're in Lancashire too, Jo. Whereabouts? Are you being offered the combined test of NT scan + bloods?

Just met up with my pregnant friend. Her docs didn't even tell her about the NT scan. She was just offered the 15-20 week quad test (the one my MW has said there's no point having) but it turned out it had been taken too early. Then by the time they told her that, it was too late to take it again!! So she's had no screening at all!

 

[jo14]

Im near Chorley (where are you) but im going to Bolton hospital as thats where i have had all my other babies and also I cant deliver at Chorley due to complications so dont want to go to preston as its a bit far and I work in Bolton, so they are seeing me at Bolton, and yes when I saw my midwife she was really good, gave me a leaflet on all tests and I will have the NT test at my 12 week scan and bloods done and can follow it up at 16 weeks with the other test, hope you get to sort it out

 

[jo14]

just adding if Bolton is nearer to you they do do it as I am booked in for having it done!!! It must be newish as with my last one 6 years ago I did not have it. But worth looking into think quite a few round here do it, its not fair you have to pay to have it done privatley, if you are willing to travel to a hospital that does offer it on the NHS even if you only attend for that one appointment to the other hospital

 

[LancyLass]

I'm in North Lancashire so different area. From everything I've read it seems if there's no hospital within your PCT that does it then you're not allowed it Totally crap!

 

[jo14]

seems very unfair hope your able to get your private scan done xxx

 

[LancyLass]

Just spoke to my midwife again. I asked why I couldn't be referred to another hospital for the screening, even though my local hospital doesn't do it. She didn't know because she'd never been asked before! However it seems it may be to do with the maternity referral procedure. You get referred to a single hospital for the entire provision of maternity services - i.e. from scanning and processing of blood tests through to birth. As I've been referred to my local hospital (as is everyone usually) then I get whatever that hospital provides. If I'd asked to be referred to a different hospital (that does do the screening) then I would probably get it. But I'd also have to go to that hospital for everything else, including giving birth, which wouldn't exactly be convenient!

 

[Junebug_CJ]

Hi

Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?

Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?

Just wondered what other over-36s experience of the screening process has been?

Hun I do prenatal diagnosis and counseling for a living and this is absolutely ludicrous! You bloods and NT will be used to readjust your age-related risk (either decrease it, increase it or have it stay the same). If it is increased you can then opt for additional testing such as amniocentesis to get a definite answer. I'm so sorry you're dealing with a doc who obviously has a very biased view and is trying to impose his/her feelings on the matter onto their patients! I would insist on having it done if it is something you want, or request a second opinion!

 

[supertabby]

i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx

I see you're in Lancashire too, Jo. Whereabouts? Are you being offered the combined test of NT scan + bloods?

Just met up with my pregnant friend. Her docs didn't even tell her about the NT scan. She was just offered the 15-20 week quad test (the one my MW has said there's no point having) but it turned out it had been taken too early. Then by the time they told her that, it was too late to take it again!! So she's had no screening at all!

The quad screening includes the NT scan. The quad screening has four parts (hence "quad") comprises of two blood tests, the results of the NT scan and assessment of your age. The risks in each test are all assessed separately and then scored together to give your total risk factor. Some areas don't do the NT scan but might still do the blood tests, it wouldn't be classed as the quad screening though - so maybe your friend did get the full screening if she was told it was the quad screening?

They do have to consider age as your risk goes up with age. When I got pregnant with my daughter I was 33 and before assessing anything else my risk factor was 1 in 900 because I was aged 30-34. I'm now 35 and our second will (hopefully!) be conceived while I am in the 35-39 group and my risk factor will be 1 in 350 before taking anything else into account. **ETA: That is still not classed as within the high risk realms as far as I am aware**

If you want the screening I suggest going privately, before 16 weeks if you can. The full quad is much more accurate at quantifying your risk. If you are high risk then the next stage is invasive testing IF you want it, but this carries a risk to baby. You may want to consider how far down the road would you go, and if you feel its worth going down that road at all iykwim. We did have the quad test (under nhs, our hospital had just started doing the NT scan), it was low risk but we were fairly sure we would have the amino test if we were high risk. However two days ago a baby was born into our family who is suspected to have DS, she is beautiful and we know she will be wonderful and loved no matter what. But seeing how her parents and older sister adapt to life with a DS child may well affect our screening choices next time. Then again we may see the challenges as too much and make the same decisions next time.

Good luck!

 

[Junebug_CJ]

It's also important to remember that these tests pick up conditions much worse than Down syndrome (although 50% of Down babies have severe congenital heart defects requiring surgical interventions) such as trisomy 18 and trisomy 13. 95% of these babies die between conception and the first month of life and the remaining 5% survive but are severely developmentally impairs (never learn to walk, talk) and have congenital defects that cause them many health concerns...

 

[Nrs2772]

I just took this blood test and do not have the results back yet, but I asure you my doctor did not tell me there is no point in taking the blood test. Quite the contrary.

 

[kosh]

Hi

Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?

Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?

Just wondered what other over-36s experience of the screening process has been?

funnily enough my MW said something along those lines too...but I'm 40!
her opinion didn't matter to me that much because I'd decided to have a CVS done anyway. when i had the procedure I told the screening MWs what my MW had said and they said it's nonsense!
I did quite a bit of reading about this, and it seems that only if you are over 45 will the test always come back as high risk!

 

[amjon]

I was told not to have the screenings done if I didn't plan on having amnio or CVS done. It's not a test that tells you for sure one way or the other. (Plus it would have cost me almost $400 out of pocket.)

 

[smellie_melli]

LancyLass I've just been reading this and am grrrr on your behalf.

Just a quickie about who provides your care- I couldn't decide which hospital to go to during my last pregnancy ( I'm midway btw 2) and my midwife said I could choose one and change to the other at ANYTIME during my pregnancy.

Might be worth going back to m/w to ask to be referred to hospital that does the test to save you having to go private?

 

[LancyLass]

The quad screening includes the NT scan. The quad screening has four parts (hence "quad") comprises of two blood tests, the results of the NT scan and assessment of your age. The risks in each test are all assessed separately and then scored together to give your total risk factor. Some areas don't do the NT scan but might still do the blood tests, it wouldn't be classed as the quad screening though

Thanks for your response supertabby but according to my NHS Screening booklet that's not right. There's the Combined Test which is the NT scan plus a blood test, done between 11 weeks and 13 weeks 6 days. Then the Quad Test is a blood test only, done later in pregnancy. This is what the booklet says:

"If it has not been possible to have the combined test in early pregnancy, you will be offered a blood test between 15 weeks and 0 days to 20 weeks of pregnancy. This test looks at different substances to those measured in early pregnancy. Like the combined test, a computer program uses the results and the mother's details to work out a risk figure. This test is known as the quad (or quadruple) test."​

I assume most of you don't have to worry about the Quad Test because you've been offered the Combined Test - hence the issue about the age risk factor never arises.

Just to clarify, the midwife didn't say I shouldn't have the Combined Test, it's just our area doesn't offer it. It was just the Quad Test she said I shouldn't have.

Junebug, I'd be interested in your professional opinion on the differences between the early Combined Test and the later Quad Test.

Anyway, I'm booked privately for the Combined Test now so hopefully I don't need to worry about the Quad Test anyway.

Thanks everyone for all your help.

 

[Sunshine12]

Hi. Ive been told I will get an NT scan done on the NHS but does the blood test automatically get done with the NT scan? Also, is there another scan that tests for different things but you have to pay for? The whole quad/NT thing is confusing me.

 

[April2012]

well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.

 

[LancyLass]

Hi. Ive been told I will get an NT scan done on the NHS but does the blood test automatically get done with the NT scan? Also, is there another scan that tests for different things but you have to pay for? The whole quad/NT thing is confusing me.

Most likely the blood test would be done with the NT scan, most of the NHS areas that offer the NT scan offer the blood test with it, but you can check what your local area does here: https://fetalanomaly.screening.nhs.uk/localscreening. (The key is on the right hand side of the map if you hover your cursor over it) But you should call your midwife and ask if there's anything you're not sure of.

No, there's no other scan. It's just my NHS area doesn't offer the NT scan so I've got to pay for it.

Did your midwife give you the NHS booklet about all the Screening processes? It explains it all.

There's two early tests (done between 11 wks and 13 wks 6 days):
- NT scan
- Blood test
If these two are done together, which they usually are, it is called the Combined Test.

If you can't have the early Combined Test for some reason then you'll be offered the Quad test between 15 and 20 weeks. This is just a blood test, but it's a different blood test to the early one.

Well that's my understanding from the NHS booklet. This might also help answer your questions: https://fetalanomaly.screening.nhs.uk/faq

well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.

Blimey, you're braver than me! I've decided I'll only have an amnio if my risk factor comes back at less than 1 in 100. I.e. only if the risk is greater than the possible risk of miscarriage from having the amnio.