Thursday, 15 September 2016

Don't screen us out

Guest post: Lynn Murray

As a special, and long overdue, treat for my regular reader (don't say I don't spoil you), I’ve asked my friend Lynn Murray to write a guest post. I’m not going to introduce it further as I don’t want to detract from Lynn’s excellent words.

Lynn is UK Spokesperson for Saving Down syndrome and Don’t Screen Us Out (DSUO). DSUO was launched in January following the announcement that the UK National Screening Committee recommended that the NHS roll-out Non-Invasive Prenatal Testing (NIPT) despite concerns raised by Saving Down Syndrome and others in the public consultation about NIPT. 

@dontscreenusout on Facebook and Twitter
@savingdowns on Facebook, @savingdowns1 on Twitter

Thanks for reading,

If people get a glimpse of what may happen in the future, what effect does it have?  Does it scare them or help them prepare?  Or do they see chaos and look for ways to avoid their fate? 

I considered all this again, after reading Dr. Kelly Cohen's item in the Huffington Post about the about much-heralded new NIPT, an acronym, of course, meaning Non-Invasive Prenatal Test, and, somewhat of a misnomer.  This was an article about the brave new world, the one, where it appears, we can find out much-wanted information about our unborn children, gently ushered through a screening system without any real inconvenience. The Government have even played their part with the advertising of these tests, one Minister being heard to say in Parliament that these tests have “potential to transform antenatal care”.


You see I'm one of the ‘Down’s syndrome campaigners’ Dr Cohen mentioned in her article, who has had to graft somewhat this year, fighting against a well-funded, increasingly popular, idea that we should usher in, the non-invasive world of antenatal testing, post-haste, unquestioningly.  What can go wrong, after all?  Aagh!  The future!  We’ve seen the apocalyptical films and read the books.  We know how this might end.

The promise of a pain-free antenatal screening experience may mean that many more women will take-up these new tests in anticipation of the brave new scientific world, in the hope of walking away in the certainty that they're not going to have a baby with Down’s syndrome after simply offering an outstretched arm for a quick ‘jab’.  In actual fact these new tests will only tell them that they 'probably' aren’t going to have a baby with Down’s syndrome, because the new screen, as I pointed out, is not perfect, it will still have false positive results, false negative results, and failed screens, in the latter situation, previous screening methods may have to be resorted to in order to provide some sort of probability.

"screening often raises needless anxiety, a low probability result abates that anxiety"

If all goes to pharmaceutical plan, more women will choose to have antenatal screening; however, as you may already know, the vast majority of women won't be found to be carrying a baby with Down’s syndrome, and they never were. The Down’s syndrome lottery has few winners.  The new NIPT screening blood test, heralded as an ‘improvement’, which could 'transform' has somewhat of a placebo effect, screening often raises needless anxiety, a low probability result abates that anxiety.  Of those who are found to have a high probability result, they will still need to have an invasive test if they want to know definitively that their baby has Down’s syndrome.  

Do you see why I call it a misnomer?  The Huffington Post article tells us that post-diagnosis parents will be 'supported throughout this time’ by the prenatal system.  Please note that Dr. Cohen never mentioned that parents will be provided with information about Down’s syndrome or counselled through the time of adjustment (great or short, depending on your perceptions of the syndrome).  No - she didn’t, and, in fact, these are some of the issues still not addressed with the advent of NIPT, even though there is now a well-developed disability rights framework in this country.

I understand that receiving a diagnosis is an experience which can be emotionally painful and difficult, but, if you stick with it, and find acceptance, you will ultimately be led towards a most rewarding experience.  This is where the campaigners come in; this is why we've taken to the streets this year. We've, most of us, actually been there, done that, had a diagnosis, unfortunately, for many, what they have found is that being 'supported' has not been as liberating as it might have been if only those delivering the news were more aware of what it can mean to live with Down’s syndrome today or have been able to put themselves in our shoes for a time.

Dr Cohen said in her article that many women choose to continue with pregnancy following a diagnosis, and that is simply, not true. Following a diagnosis that a baby has Down’s syndrome, most women choose not to continue with their pregnancy, over 90%, in fact. That's a frightening statistic considering that we claim to be a diverse society.  So, she is correct, in that, there may not be a rise in terminations, as 9 out of 10 is already an exceptionally high and questionable figure following diagnosis!  Dr Cohen has also said that NIPT will provide a ‘positive’ and that, also isn’t true, as I said earlier, these screening tests provide likelihood not diagnosis.  So, by all means, listen to what proponents of these tests have to say, and then read everything you can on the matter.

"Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose"

It does appear that something is wrong with the screening system but not because, as Dr Cohen, may have suggested that it carries ‘a lot of emotion’ for 'Down’s syndrome campaigners'.  No, au contraire, Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose - we’re pragmatists.  

So please, dear readers, discern well, don’t just believe the hype, do your research around Down’s syndrome (if you’re not already living with it) and find out about the support you would expect if the unexpected did happen.  Do you have any misconceptions about what life is like with a baby? Yes, that's right, any baby, because, that baby is very unlikely to meet all your aspirations, it’s best to get real about things now. Being so adjusted may mean that you can accept and enjoy the mess and diversity of life, and, if you are one of the rare winners of the Down’s syndrome lottery, you might get the chance to reap the rewards that are brandished on the hundreds of Facebook pages of those parent campaigners, the pages filled with pictures of children with the extra chromosome and the posts too, declaring the love and joy that families have found down that unexpected road.  These are the people who accepted the future, which is messy, but it is bright. 

Lynn (centre) campaigning at Parliament earlier this year with her daughter Rachel (right) and friend Catherine.

Lynn campaigning alongside David Elliott

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