Down's Syndrome: Sally smacks medics between the eyes with screening truths



Sally Phillips addresses 4000 at the Royal College of Gynaecologists World Congress 2019


Sally Phillips is one incredible woman who has endured more than her fair share of front row hecklers, not just as a comedy actor, but also when she created the brave and thought-provoking BBC Documentary A World Without Down's with film maker Clare Elizabeth Richards. It got everyone talking about the thorny topic of screening. And more crucially the even pricklier topic of 'screening out' babies with Down's syndrome.
"The right words at the right time 
to the right people"
3 years on and Sally's film afforded her the opportunity to speak to 4000 obstetricians and gynaeclogists from all across the globe. I am proud to be able to share the transcript below. 

Last week Sally, remained modest about her seminal talk, which left her exhausted in the days that followed as she dealt with the far-reaching ripples of the effect of her words. "I was simply able to use the right words at the right time and to the right people" she said, "I'm just a canary reporting back from the mine".

But for me, Sally's talk has torn the charming mask from the face of the NIPT industry. 
And as anyone who has ever been gaslit by an abusive partner will tell you, it's frustrating, confusing, exhausting and unsettling to have your reality constantly questioned, altered and dismissed. 
"I am the canary reporting back 
from the mine"
It's harrowing to have your deeply felt emotions diminished and discounted. Simultaneously the flames fuelling your darkest fears are fanned, while the fears themselves are flatly denied. And for our community this is akin to what has been happening since the NIPT test came out. 

Our voices were brushed off as being 'too emotional' or 'simply anecdotal', as if having Down's syndrome or living with a loved one who does is not empirical enough to be evidence.

We were told there was no evidence that Down's syndrome births would drop, that we'd all have to wait and see, that we were 'banging on about nothing'.  But of course we were right. And they knew we were right. 

Our concerns were lumped together with pro-life views and sold as denying pregnant women choice when many of are crying out for better, more informed choices for women. We were told that sharing stories of our happy lives online was wrong, immoral even, because it put prospective parents under undo pressure. 

With Sally's permission I am very honoured to be able to share with you the perfectly crafted talk she delivered that day, the one that left medics in tears and those who spoke after her lost for words. 
 "A kick up the moral and ethical arse 
of the screening fraternity"


Sally Phillips' speech to Royal College of Gynaecologists World Congress 2019


It’s been tremendously hard to work out what to say to you.  The responsibility of representing my community, my friends and family to you in 10 minutes has been almost overwhelming. 

In our community we have been desperate to talk to you.

Once they knew I had been invited 5 parents sent me scripts fully written. I’ve been inundated with quotes, statistics, slides, baby photos, wedding invites, play fliers, school reports and certificates of achievements.  It’s made me feel a little inadequate to be honest. Olly’s best primary school certificate was for ‘most enthusiastic bouncer’.

I’ve been sent articles by educators and LD nurses detailing how different the medical model is from the real people they encounter in their work. I’ve been sent leaflets made by mothers in their spare time, posters, paid for by Mums for you to put up in hospitals, articles they’ve written, drafts of charters for proper antenatal care for mothers with known pregnancy of DS that they work on late at night, unpaid, when the kids are asleep. On top of this, once again, my inbox and all my social media streams are jammed with women’s testimonies of traumatising encounters with doctors, midwives and counsellors on receipt of a prenatal diagnosis.  

How to tell our stories and be heard? Not as a box ticking exercise but actually heard and absorbed, not listened to and then dismissed as emotional, or biased, or unhelpful, but taken seriously. Being taken seriously is a problem for me generally - but this time it really matters. As you can see I’ve decided to come camouflaged as an artist’s impression of the inside of my womb in the hope that this will make you more receptive.

We know that you are good people who do great work in difficult circumstances. We know you didn’t go into medicine to cause harm, but in my ten minutes, on behalf of my community, I am here to tell you that intentionally or not, harm is being done to us.  Rightly or wrongly, screening has had and continues to have an enormous impact on us and bias and wrong practice continues to be significant determinants of our community’s wellbeing.  I am here to tell you that while NIPT and associated tests may represent a staggering technological advance they do not, not yet, represent a genuine improvement in caring for women during pregnancy.

ETHICS

Ethics and Unforeseen consequences of NIPT’is our title today. Isn’t it quite late to be thinking about the ethics? The ethics often seen like an add on to us - a post-hoc justification - an ah shit did I turn the taps off thought - carried out while clearing away the champagne glasses and party balloons from the launch of the latest technological breakthroughs in Down syndrome detection. This, for the record, feels to us, families living happily with Down Syndrome (I’m not lying about that) - in tremendously bad taste.

DROP IN BIRTHS UNFORSEEN?

And do we or don’t we discuss the drop in Down syndrome births after the introduction of NIPT?  Because it’s pretty hard to argue that was unforseen. In fact comments were made during the review process that indicated that a drop in the birth rate, ethical or not, is still viewed by some here as one of the benefits of NIPT.  

We were told that although both conception and termination rates would rise considerably the actual birth rate would remain the same.  As if the Down syndrome population were something to be managed like a group of pandas, or endangered toads (depending on your attitude to disability) or something. 

Was that ethically acceptable reasoning? I don’t know, I’m not an ethicist, I’m a sitcom actress. As a parent. It turned my stomach.

So what has happened in reality? 

Well, Public Health England don’t know because they’re not monitoring it because it’s complicated, apparently. NIPT is offered differently in different hospitals and for some reason not the same offer as FASP are recommending and besides they’re busy, they haven’t got round to it yet.  

Colette Lloyd, a friend of mine, a Mum and a speech and language therapist writes, “They’re supposed to be evaluating the rollout, how can they evaluate if they are not monitoring it? It’s a disgrace that the NHS doesn’t care enough about our population to be bothered with doing this- it’s a continuation of the issues highlighted by Panorama and the LeDer report (3 people with a learning disability die avoidable deaths every day in NHS care) It is their responsibility happening on their turf, following endorsement of a product by them”.

So Colette, being a dynamic sort of person, taught herself statistics and she has spent weekends and evenings for over year now poring over freedom of information requests to local hospitals. She has four children and a job by the way. 

Her figures are doing their second round with the National Office of Statisticians and will be launched on the Today programme in the near future. No doubt to be met with the usual universal indifference. Sneak preview - in those hospitals which offer NIPT the DS live birth rate is down 30%, in those hospitals that do not offer NIPT it is down 9%.

Why is this important to us? 

Because this is a vicious cycle. A reduced birth rate has a knock on impact on the living.  A smaller community doesn’t just mean our children have fewer friends.  It brings with it a reduction in investment in research to improve quality of life for those with Down Syndrome, a reduced incentive to provide appropriate schooling, reduced access to work and work opportunities which in turn means less independence and more isolation for people with Down Syndrome.  No work means less money, poverty, dependence, poorer health outcomes and greater separation from the rest of us. People fear the unknown. People with Down syndrome not being known in turn means more terminations.

We knew this was going to happen. You knew it was going to happen.  The manufacturers knew it was going to happen. We are in pain in my community because put simply, everybody knew it was going to happen and nobody could care less. What attitude towards our population does that betray and how does this attitude impact the way you talk about Down syndrome to pregnant women, who are, although, yes, strong and yes trustworthy, also vulnerable, desperate to do the best for their child and suggestible?

But it’s women’s choice I can hear you cry! It’s informed consent! None of us in this room would want to be called eugenic.  There is a grim history of coercive societal policies to improve the health of the population, we know it’s wrong now. That’s why the focus now quite rightly is on ‘informed consent’, and ‘reproductive autonomy’, people making their own individual decisions.  But since screening was created for many reasons, none of them the empowerment of women, I think the women’s choice rationale often sits uncomfortably on its’ public health and eugenic foundations and the welcome scrutiny it has come under through introduction of NIPT has revealed some areas where choice is not truly the priority.  

Why is the Downs test a screen and not a test? Why do we have a law that allows abortion for severe handicap without defining what that handicap is?  If Down syndrome is discovered, as I believe it will be, to be always mosaic in nature, is informed consent ever possible as the unknowables are so huge.

If individual decisions now are made within a system and in a context which is biased and overwhelmingly carries them towards certain outcomes then the end result is the same as if you had coerced them in the first place. 

I am here as a repository of stories from my community. Professor Tom Shakespeare says ‘anecdotes are not data’ - I say ‘anecdotes are just stories which are not data yet’.  When we present women with a screen and not a one off test, when it becomes so routine it’s opt out not opt in, when pregnant women, who yes are adults and trustworthy, but who as must be admitted are also vulnerable and suggestible are repeatedly questioned, repeatedly told that the only reason other women do not terminate is because they are too scared to, when they are told not to speak to people with lived experience of Down Syndrome because they overstate the positives, when they are told there is no support or help for them continuing a pregnancy, when they are made to feel guilty for bringing a baby to birth, then this constitutes a biased context. I agree with Jane that making women carry a baby they do not want to is awful. I happen to think that pressurising them into terminating a wanted baby is worse. 

Many women are repeatedly offered terminations even after expressly saying they did not want them.  I ask you on their behalves - has the fear of 'wrongful birth' lawsuits have altered practice? Has this anxiety spread from you to your work and your patients that people feel they have to offer terminations again and again.

I had this yesterday from a woman whose daughter is two.

“I’m starting an online support group for women who have been left with mental health problems as a result of being offered terminations against their wishes repeatedly. Being forced to imagine killing your own child is so completely unnatural. It's like the fear and grief of knowing your child was in imminent danger of dying/being murdered but mixed with the sick feeling of you being responsible. Even the counsellors are struggling to know how to help us. Mine is using a strategy she uses to recover soldiers from PTSD.”

Can I ask you. If our mothers were considering legal action would that change your practice?

We all have prejudices we aren’t aware of that might not look so bad at first glance.  I’m more concerned when people think they aren’t prejudiced. When Olly was born I was told ‘he’s very loving and he’ll love music’. This is the same thing well meaning people said about Jamaican immigrants in the 50’s.

It is impossible to hide 100% how you feel about disabilities and saying every time ARE YOU SURE is a dead giveaway that you think women continuing are making the wrong decision. 

Nuffield quite rightly recommended that a pathway be established to support women who choose to continue their pregnancy.  You’ve had two years to do this and while advocates and supporters of women who help women through termination have successfully got your ears and managed to even fine tune support for the TOPFMR for them, nothing has yet been done to create a support pathway for women who choose to continue.

I challenge you to shore up the erosion of choice that exists for women carrying an affected fetus with DS. Lay a strong foundation for both choices. Don't let the women who continue their pregnancies fall off a cliff due a lack of robust clinical guidelines. Don't assume a lack of these guidelines means society thinks she TOOK A WRONG TURN and you need to ask, maybe for the 2nd maybe the 10th time "are you lost dear?"

Second.  NIPT is driven by the industry. The industry are trying to sell their product. They are good at this. They need high numbers to undergo screening to turn a profit.  The global NIPT industry is expected to be worth over $6 billion dollars by 2025. These are serious players. They are not care providers. They are not to be messed with.  When I made my documentary I got a lot of online trolling from all corners, but the worst came from city traders.  “Now get out the fucking way”.  

Even the name ‘Non-Invasive’ is a marketing tool as the test is not currently diagnostic and its positive predictive value in a younger woman, in the absence of other screens is - correct me Basky - around 48%. Its accuracy and benefits are usually oversold. It doesn’t provide peace of mind. It’s not even testing fetal DNA, but placental. The dangers of the (actually) diagnostic amniocentesis too, have been massively overstated - Professor Nicolaides told me that he lost 1:1000 healthy babies after amnio, Lyn Chitty that her rate was !:600. But the manufacturer literature puts this rate as 1:100 a figure which makes national roll out of the test seem economic.

By this time most of the major players in this field have benefitted from industry funding. If you all have taken money and benefits does that make it ok? Not to us, the ‘canaries in the mine’ to use a term for the DS community first coined by Tom Shakespeare.

If making money out of testing that leads in most cases to selective termination is not a form of eugenics, I do not know what is!

Be on your guard against spin.  Companies have long recognised that using trusted individuals is an effective way to promote their products. David Cameron is a lobbyist for Illumina.  I hope they’re regretting that.  Even support groups are now getting funded by business, so they become advocates for NIPT.  In the states manufacturers have set up their own support group where counsellors funded by them give online support to families and then train them up to talk about their (always positive) experiences of NIPT to medics. Some of our parents have been flown out to the States to be taught how to advocate for better information in pregnancy via NIPT.  This practice of cultivating fake grass roots support for a product is known as ‘astroturfing’ and has been supercharged by the internet. We have seen neutral parent speakers replaced with manufacturer vetted parent speakers at medical events. A parent who severed her ties with Illumina last minute was replaced.

It is also being noted by various practitioners of medical ethics - Professor Becki Bennett and Panagiota Nakou, for example, at the University of Manchester, that elements of spin that over-represent positives about the test are creeping into titles, introductions and conclusions of scientific research papers.  Not the research, not the results or methodology, but the way it is presented.  I read their response to a paper which had been published in the Journal of Medical Ethics, a paper which was supported by the Wellcome Trust.  Be sure of what you are reading and hearing. I’m just going to say two words. Brexit and Trump.

But it’s still women’s choice, it’s not coercion. Three things.

First, the information is often not either balanced or the information women need–it may give you data about the test, but it does not give good information about the real lives of people with DS and other disabilities. 

We tell you over and over that we are happy with our family members but we are not believed. I could show you Brian Skotko’s paper, a survey of 2000 families that says that 98 percent of people with Down syndrome are happy with their lives, 97 percent love their family member, but the respondents were selected from families in support groups so some argue the study was skewed. Perhaps it’s better to challenge you to show me a single paper that demonstrated that people with Down syndrome and their families were not happy? 

Second, the health professionals may be biased.  
Not because they are bad people. But because we are all biased to some degree and we live in a society where people with Down syndrome are not numerous and not included and a culture that is biased against them.

Third, the context of screening is a conveyor belt.  I think the word is ‘path dependency’.  We don’t have enough genetic counsellors and specialist midwives.  Providing a test implies that people should have the test.   People who decline the test are asked again and again, to the point of trauma, why they have not had it.  

Evidence shows that people adapt to disability.  But it takes time.  When you have a spinal injury or contract MS, you may want to die. You may think your life is over, but all the empirical evidence shows that you adapt, you change your environment, you come to terms, and life goes on, just as happy as before. Tom Shakespeare has data for this. Marcia Van Riper’s study of over 3000 parents from more than 50 countries showed that while 25% saw Down syndrome as a tragedy on diagnosis, given time only 0.68% felt the same way.

And this is a central issue with NIPT that I haven’t heard discussed.  That our stories often involve that devastation at diagnosis which generally comes about through lack of knowledge, fear of the unknown and changes pretty fast, leaving parents with huge feelings of guilt for having been so upset to start with.  NIPT is so efficient prospective parents don’t have time to adapt.  The vast majority of people who carry on with pregnancies have good outcomes, but many others end pregnancies, thinking they are doing the best for their families, and not knowing of the joy that families and people with DS experience.

Finally, we talk about the benefits, but we don’t talk about the harms that result from screening. The anxiety for all pregnant women.   The distress at terminating wanted pregnancies.  The distress for people with DS and other conditions who feel very unhappy that society is sending the message that they are not wanted.  The way that a shrinking population may find it harder to get medical expertise, educational expertise and the other supports that they need to lead good lives.

Is it enough, we must ask you, for a particular population group to be targeted for screening because another more powerful or more numerous population group has a gut feeling that their lives are crap. Is that enough? We don’t think so. 

My personal belief is that if we allow unrestricted freedoms here, a consumerist ethic at this point, that we end up with an increasingly unfree society. Where the median becomes increasingly homogenous, ideas of normality become increasingly restrictive and conditions conceived of as unliveable with become more and more numerous.  Who then will be welcome?

You, rightly or wrongly, to some degree hold the future of our community in your hands.  Please take more care as you move forward.

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