To think MN is taking a strange stance on the NIPT test?

[eeyoresgrumpierfriend]

Is it just me or is MN giving a lot of coverage to those opposing the new non invasive prenatal screening tests the NHS wants to introduce. Today's blog of the day, Sally Phillips at Blogfest and there was a guest post against screening a while ago too.

Full respect to these women and the choices they've made but isn't the crux of the argument about women's choice?

The NHS already screens for Down's, Edwards and Pateau's but the new test will be safer and can be done earlier. It's only going to be offered to women who would otherwise be advised to have amnios/CVS.

So it's a less invasive, faster, less scary, safer way of women getting the information they want to make an informed decision right for them.

Odd that MN's seem to be giving a platform to the anti-argument with no counter-balance?

I don't understand the money argument here either. I paid £275 for my NIPT recently, via a local NHS Trust. If there was national commissioning of a service the test would be cheaper than that. An amnio or CVS costs significantly more than £275. It is highly unlikely this test would be rolled out to all women; it would be for women who have a high risk at the combined test, and replace the use of amnio/CVS.

An amnio involves around an hour of a consultant's time, plus nurse support costs and disposable equipment, followed by lab work and review afterwards. It costs a lot more than £275.

The thing is, we already have tests to diagnose trisomies, albeit with a risk.

Those parents that want to ensure they don't have a baby with Downs can already have tests and choose to abort if they wish.

All the new test is doing is making the process safer. A good thing surely.

As someone that was incredibly fortunate to be offered the NIPT test on the NHS, I just can't see why it shouldn't be available to all. My chances of a miscarriage from amino/CVS were higher than the chance given to me for DS so it was as a no brainier for me.
I don't see how it can lead to an increase in abortions - if you are inclined to abort a DS pregnancy then you will do that whether you find out by NIPT or amino/CVS. It just takes away that miscarriage risk.

I also think these things are connected. Services to people with disabilities have been cut in a way I have NEVER seen before. There is no money. We are told there is no money. But there IS money to keep developing tests

I agree that services for disabled people have been cut beyond anything remotely reasonable, it's outrageous and a source of national shame.

However it's not true to say these things are related. NIPT has not been developed by the NHS. The technology exists and the NHS is now considering its adoption, in exactly the same way it considers all new developments in medical science. I don't believe NIPT is more costly than amnio/CVS (as I explained above), so there would not need to be any new money for this test, just a redistribution of funding.

Funding for disabled people's services is predominantly local authority based. For now at least, LA budgets remain relatively distinct from health budgets. The two funding decisions are not linked and I can't think of a mechanism through which they could be.

Good point mrs. Why is there the cash to even have this conversation when vital healthcare isn't available on the NHS for a lot of people?

If it wasn't economical for the NHS or the government in some way, it wouldn't be on the table. It would be 'unfortunately impossible', like provision for disabled people.

I have to admit that I haven't RTFT, because I'm a touch under the weather ATM but wanted to comment because I a) have a child with Down's Syndrome, which was b) pre-nasally diagnosed by NIPT c) on the NHS so I think my opinion is relevant :)
I'm pro the NIPT test. Knowledge is power and the amnio is a risk that shouldn't be needed/necessary. HOWEVER it mustn't be accompanied by a push to then abort. It a woman makes an informed choice to have a termination following the diagnosis then that is absolutely their choice - no arguments from me. The problem is that currently women having the tests are called with the results, and if positive for Down's syndrome are told 'I'm sorry, your baby has DS - when are you free to come in for an abortion'? Maybe this doesn't happen everywhere, but it happens a lot, it happened to me and to many of the women I am now friends with (children with DS born at a similar time to mine from around the UK). One of my friends, actual friends, not just someone I know online, was actually asked if she wanted a termination at every antenatal appointment - including when she went for induction at 37 weeks! This is what 'we' in the 'Down's Syndrome community' are objecting to. Not the NIPT, not it being free on the NHS but it being rolled out without systems in place to calmly and unbiasedly support women post-diagnosis.

Lol at pre-nasally. That's because I have a cold and am very nasal right now...

Glad it made sense MRSDV, am on a Sudafed cloud and struggling to read it back. I didn't even bother to mention that my child with DS is a pure joy because it's not relevant to the topic in hand, but she very much is and I feel the world would be a much poorer place without her and other like her in it.

This, Nightfall.

Isn't there a slight hypocrisy here too though?

They are basically saying 'we oppose screening because the results may be presented in a way that will pressure people to abort' when the act of trying to have screening withheld is in itself a way of pressurising people not to abort.

Quite aside from the fact that it misses the point that the NHS is already screening for the trisomies anyway - it just wants to introduce a safer, earlier test.

Sorry thread had moved on by the time I posted.

Will we be able to test and abort for all genetic conditions? What if we could test for autism? Mental illness?

I have both and am happy with the idea that if it had been somehow prenatally diagnosed I may have been aborted.

Because some people don't have the CVS because they are concerned about MC. They get the numbers (which are not very clear to a lot of people) and they don't want to take the risk.
So they don't go for it.
If the risk were eliminated surely it would mean more people having tests = more people terminating. Given that we know that the take up of termination is so high?

For me this isn't about the increase in terminations due to the negative results. If that is what someone feels is right for them, its right for them.

Its about the seemingly relentless quest to prevent people with downs being born.

This almost seems like you're saying it's a good thing that the fear of miscarriage leads to women continuing pregnancies that (if they had had the knowledge that comes from the NIPT) they might have otherwise aborted. I'm sure you're not saying that.

That must be so hard to hear Night and no pressure should be put in
On a woman to abort under any circumstances.

My only view as s nurse was that I have heard doctors mention they feel they need to help a woman give herself permission to abort if she wants to and sometimes that's really hard if initially she wanted to keep her baby but then starts to feel later that she doesn't.

Doctors have to discuss with women their options and facilitating choice but I guess it's obviously very upsetting to be almost having to explain your choices over and over again.

I guess it's all in the vocabulary and the empathy shown by HCP that makes a difference.

Does the NHS offer screening for Edward and Patau syndrome? I thought it was a Down syndrome screening programme, - but it obviously can detect other more serious (?) anomalies, but also less serious anomalies and even variants may be detected.

Lots of people made comments about doctors and midwives attitudes. I think I agree with the comments that the attitudes are often negative.
Interestingly if a sex chromosome anomaly is identified antenatally a woman is more likely to terminate if counselled by a obstetrician compared to a genetics consultant/counsellor.

I thought screening hasn't actually reduced the number of children born with Down syndrome, due to the increasing age of mothers.

I worry how many women give genuine informed consent to the existing tests, also should we consent to tests for 'reassurance'.

Realhousewives - that's how it felt to me. I didn't think the HCPs who talked to us were trying to persuade us into a termination, but letting us know it was a reasonable option. Which I appreciated. Someone else might have seen that as 'persuasion' - but it honestly didn't seem that way to me.

I'm pro the NIPT test. Knowledge is power and the amnio is a risk that shouldn't be needed/necessary. HOWEVER it mustn't be accompanied by a push to then abort.

Agree with this completely. There needs to be good information and no judgement so people can make their own decisions, not pressure from doctors.

I think we need to completely decouple the idea that wanting screening = aborting those with downs syndrome.

Articles criticising the testing as eugenics or people saying 'well I won't have the screening because I wouldn't abort a baby with downs' are just continuing the idea that if you agree have the tests you've already decided to abort in case of downs, which is clearly not true.

This might sound odd, but I'm not sure HCPs are well placed to offer women screening tests for conditions that are not primarily 'medical' issues. Unlike conditions where you are ill all your life, DS is essentially a difference. The disability is mainly because you are different from able-bodied people, not because you are in pain or sick. But a doctor is trained to see people in terms of 'sick' and 'well', 'fixable' or 'non-fixable'. In a sense, they are perhaps the least objective people in the caring profession. And are they well versed in DS beyond medical complications? Almost certainly not as well as other professionals would be.

Doctors coming at this from a medical angle would not have the social model expertise - how to live well with DS and what it really means to be that way. Instead, they will see it as a fault and relate to you as if you do too.

My only view as s nurse was that I have heard doctors mention they feel they need to help a woman give herself permission to abort if she wants to and sometimes that's really hard if initially she wanted to keep her baby but then starts to feel later that she doesn't.

What patronising BS.

Doctors have no business thinking they 'have to give women permission' to do anything. Giving one woman permission may feel coercive and judgemental to another woman. We aren't children. All we need to know is that the doctor is a medical professionalism who will not betray his attitude to our choices by so much as the flicker of an eyebrow.

medical professional

No need to repeat yourself Mrs, I've read your previous posts. I would've just liked some clarification on whether you think NIPT will increase abortion rates of DS foetuses because people have more information to hand, and whether you think that a decrease in children being born with Down's is an undesirable consequence of people being able to test with no risk of miscarriage. And, whether that therefore means that NIPT has bad consequences, from your POV.

gone I totally agree with your post and it's a shame you called my RL knowledge bull shit. Yiu may be very strong and knowledgable but not every woman is especially in these very very difficult and traumatic circumstances. It's not patronising to suggest some women need to feel they can give themselves permission to abort just as they can choose not to.

I had an amino with my 4 th child and would have aborted if she had been downs. Actually I would t have wanted a doctor in any circumstances to 'not flicker an eyebrow' I want warm empathetic supportive HCP.

Permission isn't from the doctor to the patient it's supporting the patient to give themselves permission.

2 very different things.