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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Harmony/NIPT on NHS?

14 replies

DorotheaHam · 17/12/2019 18:35

Does anyone know if the Harmony test is free on the NHS in Chester? I've had a high risk Downs syndrome result and it seems to be a postcode lottery as to whether you can have this test free or if there's a charge.

I can't find anything online which indicates either way.

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Nanmumandmidwife · 17/12/2019 19:06

Sorry to hear that you are facing this. It is currently, as you say, a postcode lottery.This is because the National Screening Committee have not yet included NIPT in the standard pathway. Lots of reasons why, but work is ongoing to make this routinely available.
It is important to understand that Harmony is just one brand of NIPT (the one that has spent the most on advertising!)
You need to contact the screening midwife at your hospital who will know the current situation in your area. That is probably who gave you the result of your combined test.
Would you consider an invasive test? If you are referred for an invasive test, many of the regional fetal medicine units are able to offer NIPT if, after discussion, it seems more appropriate for you than an invasive.
Happy to talk by PM if you want to discuss specifics of your situation privately as I am a midwife specialising in issues around screening & fetal medicine.

DorotheaHam · 17/12/2019 19:40

Thanks Nan. My chance is only 1 in 50 so it's not massively high. I think the main risk factor is my age (40). My NT measurement was 2.3, I know this is normal. Im seeing the midwife tomorrow to discuss further, but obviously I have been compulsively googling all evening.

I'm wary of the invasive test because of the miscarriage risks. The baby is result of a donor and there isn't really another chance to try again. But having a child with Down Syndrome isn't my ideal scenario.

Also I believe the nipt test isn't 100% reliable so I'll have to ask for the stats on the test they offer if they do do it.

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Nestofvipers · 17/12/2019 21:50

I have done some research into this.

If you can’t get a NIPT test on the NHS, the postal kit for these people www.thisismynipt.co.uk is the cheapest. I did the NIFTY and it was £280 I think. It is actually a better test than the harmony test as more sensitive for Edwards and Patau. The sample goes abroad though so takes about 10 days to get a result.

If you wanted to get a result ASAP, the safe test and the Iona test are both processed in the U.K. so you get a result within 3-5 days but the cheapest I found them for was about £380.

You’re right that the NIPT test isn’t 100% accurate as it is a screening test rather than a diagnostic test, but it is almost 100% accurate.

Nanmumandmidwife · 17/12/2019 22:02

I offer the SAFE test (Iona) for £345 in Sussex and Surrey

Goldenmother · 17/12/2019 23:22

Hi
I've just had the Harmony test done today and I got mine on the NHS I live in London but I also have a friend that did have to pay for this test 5 years ago it wasn't available and she paid £650 I don't understand why it not available for all people that need it on the NHS

Galanta · 17/12/2019 23:25

Hope you get the test sorted. FWIW Harmony is extremely accurate and highly unlikely to give a false result either way for Down Syndrome, although exceptions are always possible. Best of luck.

DorotheaHam · 18/12/2019 17:14

Thanks everyone. I fell asleep quite early last night so didn't get to see your replies.

It's definitely not available on the NHS in Chester. I even mentioned that some areas of the country offer it for free (not in a nasty or complaining way) and the nurse denied this is the case.

The test does seem very reliable, so I've decided to have it done.

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Amanduh · 18/12/2019 17:29

The nurse is telling fibs, my results gave a 1:61 chance so our trust (Gloucestershire) offers the Harmony Test free to any women with a higher than 1:100 chance. I had it last month. Anyway, glad you have decided to have it, I would definitely have paid if I had to. It’s very very accurate. Good luck x

Goldenmother · 18/12/2019 18:09

From what I was told at my test yesterday anyone that comes In with a score of 250 or under are offered this test mine was done on NHS my trust is Islington

bengalcat · 18/12/2019 18:14

It certainly is available on the NHS in some areas - often to women with a higher risk on standard screening . It is more accurate but as others have said it’s still a screening test so not 100% . Even invasive tests can have diagnostic doubt and may need repeating or an offer of repeating .

Nelbert19 · 18/12/2019 18:16

Yes NIPT is free in Wales for high risk mums too, so definitely postcode lottery.

Best wishes for your results

DorotheaHam · 18/12/2019 19:54

I knew she was bluffing it, she also said Wales aren't doing it when I mentioned there. Said they had but have stopped.

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Addicted89 · 18/12/2019 20:02

I had the NIPT test in North Wales a few months ago as my downs result was 1 in 75. I had mine at Glan Clwyd Hospital

MrsTiffin · 18/12/2019 23:27

I had mine privately at the Women's in Liverpool but I'm sure someone mentioned it would be done on the NHS if you were under their care (I was on the Wirral) and came back as high risk.

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