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Pregnancy

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

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Original poster

Urgent help, I'm being refused screening for Down Syndrome

23 replies

lifewithsomeonespecial · 26/04/2022 07:32

I have a coil pregnancy. Found out at 13 weeks. I'm now 13 weeks and a but.

The cut off for combined screening, and not just Down Syndrome, is 14 weeks 0 days. After this it is known as a Quadruple test and not as accurate.

I was advised by EPU to do the referral form online and I did. On Monday I rang up the maternity reception and asked if they'd received it

I know it hadn't been long at all but I'm cutting it fine due to screening etc

I was advised the earliest appointment for a booking (over the phone) is 5th May. I will be over 14 weeks by then. The receptionist said the midwife over the phone would then book my scan

What can I do? I don't want to miss the proper screening still have a chance not to if they move things along asap or just get me in for a scan

Any ideas what I can do to push this?

OP posts:

Whatafielddayfortheheat · 26/04/2022 07:35

Can you have it done privately? The harmony one is a blood test, think it is very accurate and can be done any time.

Merryclaire · 26/04/2022 07:36

Hi there - try pushing for a NIPT test on the NHS. If they don’t give you one, can you afford to get one done privately? It’s far more accurate than the standard tests anyway. The combined test is not exactly renowned for its accuracy and many people still have the NIPT for peace of mind.

PopGoesBang · 26/04/2022 07:36

I'm not 100% sure, or even if it would be an option for you. But I believe you can get harmony tests done privately. It may be worth looking into.
I hope someone with much more knowledge comes along and is some help.

Gunpowder · 26/04/2022 07:37

Call at 9am every day and see if there are cancellations and if they can fit you in?

Original poster

lifewithsomeonespecial · 26/04/2022 07:37

Unfortunately not, I can't get a harmony test done at the moment

I already have a disabled DC so wanted the combined screening for peace of mind

I'm a low risk category anyway so the combined screening would be fine

OP posts:

Lazypuppy · 26/04/2022 07:44

I think all you can do is call each day for cancellations. If they don't have any appointments, or haven't processed you yet, not sure what else can be done. There isn't much they can do as you found at about the pregnancy so close to the 14 week cut off.they aren't refusing you, they offer another test for after 14 weeks or you always have the option of paying for private tests and scans like most women do.

Merryclaire · 26/04/2022 07:51

As you’re a low risk category, try to take peace of mind in that it’s a very low chance of DS.
I would still try pushing them to do the combined test or refer you for a NIPT as you are anxious.
If not, I know it’s expensive but the NIPT is the best option. I believe can be performed any time from about 10 weeks. Good luck x

Snowflakes1122 · 26/04/2022 07:56

Can they get you an appointment at an alternative hospital sooner?

Think the suggestion previously mentioned about calling on mornings to check for any cancellations is a good one too.

Good luck.

ZoeQ90 · 26/04/2022 08:02

Look if there's a nearby epu you can self refer to and ask them too

linerforlife · 26/04/2022 08:03

Ask to speak to a midwife not just the receptionist and explain your situation again. Ask to speak to the head midwife if necessary.

SpidersAreShitheads · 26/04/2022 08:04

Meant in the kindest possible OP but they're not refusing you. That's unfair to them. If there's no appointments available, they can't magic one up out of thin air. Just echo the PP, ring and emphasise that you'll accept any cancellation even on virtually no notice (if you can) and just keep ringing. First thing in the morning is a good idea. Otherwise private tests would be the only way to get the peace of mind you're looking for. Best of luck.

linerforlife · 26/04/2022 08:04

Sorry pressed post too soon. From your explanation it doesn't sound like you're being refused screening - it sounds like their just treating this as a normal booking in procedure. You need to keep calling and escalating so that someone clinical reviews your case not a receptionist, and really clarify if you're "being refused screening" because I very much doubt this is the case.

carefullycourageous · 26/04/2022 08:05

Escalate, ask your GP to intervene, approach PALS, just generally make a nuisance of yourself?

Sorry this is happening to you.

UnspeakableBode · 26/04/2022 08:29

To be fair to the NHS theyre not refusing you screening at all. The combined test is really inaccurate, the one I had recently came back as high risk and then NIPT (on NHS) came back low risk. Midwife told me they are really innaccurate and impersonal. With the quadruple test if it comes back high risk you'll be offered NIPT SO I'd try and hold out for that and if you still don't feel reassured look into getting a private NIPT test done its expensive but is far more accurate that the other tests. Good luck!

cafenoirbiscuit · 26/04/2022 08:30

Absolutely escalate this, maybe saying you have one disabled child and early screening is essential to your mental well-being.

doingitforthegirls · 26/04/2022 09:07

In my area the cut off is 13+6 - I doubt they'd be able to get you in within the space of a couple days since you are already close
To this cut off

Why can't you get a harmony test done?

Original poster

lifewithsomeonespecial · 26/04/2022 10:07

Thanks for the advice

I phoned delivery suite. They were more helpful. And obviously comical so better able to assist and know the severity of the situation.

She's chasing for me now and going to see if she can get me booked today or tomorrow as they can't organise the scan without being in the system and booked. She said the scan can be squeezed in, it's just finding someone to do the booking

OP posts:

Original poster

lifewithsomeonespecial · 26/04/2022 10:08

Thanks for the advice

I phoned delivery suite. They were more helpful. And obviously comical so better able to assist and know the severity of the situation.

OP posts:

Original poster

lifewithsomeonespecial · 26/04/2022 10:08

*clinical

OP posts:

Kat1953 · 26/04/2022 11:59

SpidersAreShitheads · 26/04/2022 08:04

This exactly. My friend works in a similar role and the abuse she and her colleagues get from people assuming they're not doing their best to help them is unbelievable. I know you weren't abusive, but it is worth pointing out that they can only do so much.

I'm really glad you're getting further with the delivery suite - good luck with the test!

crabcakesalad · 26/04/2022 12:10

I would do the NIPT in your position, the combined screening is a pretty rubbish test.

Original poster

lifewithsomeonespecial · 26/04/2022 15:01

@Kat1953 Sadly, in my experience with Maternity, you often don't get unless you push (unintentional joke there)

That's been my experience anyway. But you're right - there's never any excuse to be abusive towards anyone. That's not on

OP posts:

ScrollingLeaves · 26/04/2022 16:52

Private?

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