Antenatal care in Northern Ireland. Trisomy screening test offered?

[Ro84]

Hi,
my GP said that i would get a letter for my 12-week scan in the post. Thats all i know. Will i have other appointments in my local health centre or is that all. I don't know my blood type either, will they do a blood test to find out?
The other thing i am concerned about is that i heard that Northern Ireland is the only developed country in the world where the blood test to rule out abnormalities in the foetus is not offered. Is that true? Due to my age and my husbands (in his late forties), i would like to get it done. It really bothers me from the point of equality that northern irish women are treated worse than their neighbours in England, Scotland or wales. It is available to get it done privately in Belfast (500-900 pounds), so it is not illegal. Whats the problem with the NHS, then? They cannot deny women something that is not ilegal and is given routinely to women in other regions. Could i request to get it done in the NHS in England as i have family there and will be visiting anyway?

Hi there I am from ni... and I have often wondered this too. From previous pregnancies I only found out my blood type as I was rhesus negative and needed anti d injections . I am 30 and my partner is 40... it worries me also! Probably all down to funding sure u know what it's like here 🙄

Hi ro84

I'm in the roi and the screening is not done here, and even an anomaly scan depends on what hospital you go to.

There is a thing called harmony testing I think its about 500 euro in the south as far as I know that screens for the trrisomys. That takes care of your question about being the only developed country I think.

I imagine everywhere has to screen for blood group as standard and they also check iron levels and virals screens. I'm not sure when that will be done in ni but it is done before booking appointment in the south.

Congratulations on your pregnancy hope it all is smooth sailing from here.

You will find out your blood type but you're correct in that trisomy testing is not carried out. Probably because abortions aren't an option in this country even if your child does have such a condition.

it's not funding, it's to do with religion. They are afraid that If you are told you have an birth defect that is incompatible with life (such as Edwards and Palau's) you'll be thinking to have an abortion, and you can't have it here. I am thinking of kicking up as fuss not just for me but for all women. i can't believe no-one ever raised the issue and we are treated worse than any other woman the the EU and USA. i can't imagine how traumatising it is to find out at 30 weeks that your baby won't survive and your life will also be at risk if he dies inside of you and when they have to take it out. At 12 weeks at least you haven't told most people and you haven't still fully realised that you are having a baby. You need time to prepare and think that will be the next step if a fatal diagnosis is done. It is basic antenatal care and good practice in the rest of the developed world. Im sure our politicians don't really care about it (because even though they are very religious doors out, they get it done privately since money is not an issue).

Does anyone knows where i could go to inform myself better and make a case? i still don't believe that if you are at high risk you are denied a basic human right just because happen to live in a different town.

No, My friend got it done in the HSE in Dublin last year.
www.hse.ie/eng/health/az/d/down%27s-syndrome/diagnosing-down%27s-syndrome.html
Early diagnosis doesn't mean abortion. Should they stop early diagnosis of other diseases just in case people might get too anxious or resort to drastic measures? Look cases like Angelina Jolie, maybe too drastic for some people but some women get diagnosed and they decide to carry on and accept whatever comes their way. its just the peace of mind.
If you told me we live in Nigeria and these are the rules, i would accept it. i just don't accept that UK mainland women and NI women with money can access something that is supposed to be free.
Sorry for the rant. Maybe i should be a human rights activist. People just seem to switch off and on from social injustices like nothing. i wish i was like that!

I live in England so had no idea this wasn't standard. You should definitely 'do something'... Just not sure what! It is incredibly unfair and I find it so so disgusting that something like religion can still be the ruling power over things like this. We don't live in the 1800's!! Religion should be a choice for those that wish to follow it/believe. Not to decide how a country and its politics and general way of running should be decided. My advice to you, if you can, is just to pay it and go private. I have found pregnancy worrying enough as it is. If you are able to eliminate some worries by having tests I think it would be more than worth the money for the peace of mind. Then that will just leave all of the 'normal' worries! So sorry you are in this situation it's incredibly unfair!

I had DD in the Ulster in April, not sure if the different hospitals here have different rules.

Buried in the info I was given was that it's possible to request a blood test, and that it's offered as standard to women over 35. Can't remember the name - not the harmony, maybe the combination test or quad test or something like that? I got the impression that it's similar to the blood test done alongside the 12 week scan in the rest of the UK. Obviously since it doesn't have the info from the scan it's not as accurate but it's better than nothing.

I requested it and while the hospital seemed surprised given we've no particular risk factors, had no problem getting it. The midwife explained that if the result showed a high risk, we'd be referred to the fetal medicine unit at the Royal, and that if we decided to terminate we'd have to travel.

There's also the option to have the same test as the rest of the UK done privately which is still much cheaper than the harmony test - about £90 iirc.

Obviously the ideal would be for women in NI to have the same rights as those in GB. But just letting you know there are options.

Best of luck with your pregnancy.

i'm on my second and have never been offered any tests i asked once and was told they don't offer them as abortion is illegal

@LivLemler - that is really good to know. I had my booking appt at the Ulster a few weeks ago and when the midwife was doing the scan I asked if they measured the Nuchal fold and she awkwardly said they “Didn’t do that here.” I didn’t know what else to say.

I’m slightly nervous as when I was 39 weeks with DD I went to the Royal with reduced movements- when we were in the waiting room one of the other v pregnant ladies waiting noticed a girl in a dressing gown walk outside for a smoke and said to her Mum “Oh I think that was Claire from my antenatal class, she must have had her wee baby.”

When the woman walked back in, she called her over and said hi and asked how she was and the lady answered that she had the baby the day before and she had Down’s syndrome. She described seeing the baby for the first time and having to explain to her partner that there was something wrong because he didn’t realise.

It was absolutely devastating and a fucking shame on our health service that that woman wasn’t afforded the same heads up that her baby had a medical condition that would have been standard anywhere else in the UK.

dinosaur - I should've mentioned, I think the blood test needs to be done by a certain gestation, so if it's something you would want and you've had your booking appointment, you might want to move quickly.

And yes, those poor parents. It really is a disgrace.

I am in England and was not given the option of this testing on the NHS. We are both in our forties. We paid for the testing privately. It's not just Ireland and it is down to funding, in England at least.

I've just realised you may be talking about nuchal fold. This was offered at 12 weeks, however we declined. It is not as accurate as the blood test and just tests for Downs. If you're worried, I really suggest you do the Harmony/Serenity test.

I am thinking of kicking up as fuss not just for me but for all women. i can't believe no-one ever raised the issue

Er, do you really think people haven't? The campaign for abortion rights in NI and the ROI has been going on for decades. The law hasn't been changed because politicians don't want to change it and voters haven't held their toes to the fire to do it. Not routinely offering the tests is effectively because their principal purpose is to allow women to opt for termination of their baby tests positive. the first

By all means get involved though. Donate to the Abortion Support Network, to Marie Stopes and to BPAS for their NI campaigns. Write to your MLA in strong terms and encourage others you know to do the same.

thank you all. Just losing my hope in the health service. Today, I have been offered my 12 week appointment (scan and all the bloods, 2 hours in total) at 14 weeks! I am abroad that week for 2 weeks because of work. So i have been told that unless i ring every day and be lucky enough to get a cancelation, i will have the appointment after that, at 16 weeks. This is just ridiculous. i have been crying all afternoon. All my life paying NIN and for once i need the health service they can't help and i have to go private.
By 16 weeks i will be already showing and i wont even know if i have a viable foetus! This is just a joke, if there is a waiting list for pregnancy care, whats the point of having pregnancy care at all? New joke: i walk into the midwife's room. "i am pregnant". "sorry, but we have a 10 month waiting list at present, do you want to proceed with the scan of your live baby?

The scan and the test can be done up to 14 weeks, that's normal so don't worry about that. Unfortunately with so many people needing the service you do have to work around what dates you are offered. I was also told that they would only change the date in extreme circumstances. If I were you I would accept the scan date and make work fit rather than the other way round. Work has to take a back seat now and they will have to accept this. Is there no way you could fly out earlier/later to make the scan and still do some of the work abroad? If not I would be telling work I couldn't go at all because this takes priority.