Updated NHS guidance on Down’s syndrome could save lives

Mothers of children with Down’s syndrome have praised the NHS for updating the language in its guidance to provide a more balanced account of those with the condition.

The updated advice could result in less disability-selective abortions as more pregnant women see the unique positive traits that shape children with Down’s syndrome.

Parents had previously criticised advice on NHS websites for its “endless lists of problems, risks and red flags”, urging the NHS to offer a more realistic overview on the condition from those who had first-hand experience. 

Campaigners have now thanked for the NHS for amending the advice which wasn’t due to be revised until April.  

In its new guide for parents, the NHS website says: “People with Down’s syndrome will have some level of learning disability. This means they’ll have a range of abilities.

“But, like everyone, people with Down’s syndrome have their own personalities, things they like and dislike and things that make them who they are.”

Prior to the change, the website focused a large part of its advice on the health conditions associated with Down’s Syndrome. It failed, however, to show that people with Down’s Syndrome can live a happy and prosperous life.

Another key area which was revamped was the section on screening for Down’s syndrome during pregnancy.

The page now has a bold yellow box with the words: “Important. It’s your choice whether or not to have any screening tests.”

Whereas previously, the guidance said: “If these tests show that your baby has Down’s syndrome, you and your baby’s other parent will be offered counselling so you can talk about what this means.”

“You may also be offered an appointment to meet a doctor or other health professional who works with children with Down’s syndrome.”

Screening tests for Down’s syndrome are offered to pregnant women at around 11 to 14 weeks of their pregnancy. While the tests cannot tell for certain if the baby has the syndrome, they can reveal how likely it is. 

Parents then, if they wish, can have further tests to find out for certain if their baby has Down’s syndrome. 

In England & Wales, government statistics show that where Down’s syndrome has been discovered in prenatal screening over 90% choose to abort the child.

British actress Sally Phillips, whose 15-year-old son has Down’s syndrome told MailOnline: “Myself, and many other members of the Down’s syndrome community, are absolutely thrilled with the updated information.

“The words are balanced, impartial, non-judgmental and thoughtfully written. It is so refreshing not to be immediately presented with a list of every single ‘problem’ or ‘challenge’ that you may (or most likely not) face.

“A link to real lived experience is perfect, as well as reminding the reader that people with Downs syndrome are individuals, shaped by their families and experience, just like anyone.

“When my son was born 11 years ago, I was presented with a very bleak future of unknowns and it made me see him as ‘Down’s syndrome’ instead of the beautiful baby he still was. It was very dehumanising.”

Carol Boys, chief executive of the Down’s Syndrome Association, added: “We were delighted to have been working with NHS Digital over the last few months to update their information about Down’s syndrome.

“We put a tremendous amount of work into making sure the new resources are balanced, accurate and use the correct terminology.

“We have been very encouraged by the way in which NHS Digital has taken advice and consulted with us, and others across the community.

“They have spoken to individuals with Down’s syndrome and their families, and we feel the new resource captures the ‘lived experience’ very effectively and will undoubtedly be well used by anyone looking for good quality, up-to-date and balanced information.

“We are also pleased to be referenced as an organisation that can provide additional information, advocacy and support at all stages of life.”

The change in guidance is a welcome move but the Down’s syndrome community highlight there is still work to be done.

New research from Positive about Down syndrome revealed pregnant mothers who refuse to abort their children with Down’s syndrome are being pressured by some medical professionals to change their decision.

One mother, whose child is now three-years-old, said medical professionals told her they could leave her baby with Down’s syndrome to die if it was struggling after birth.

Another mum told how even at 38 weeks into her pregnancy she was being offered an abortion.

Disability advocacy group Don’t Screen Us Out are calling on the Government to urgently clarify that abortion for Down’s syndrome will not be introduced to Northern Ireland, after a newly launched consultation on abortion in the province suggested disability-selective abortion will be available, for any reason, up to birth.

Press release – Government announces proposed extreme abortion framework for NI, goes far beyond law in Eng/Wales

PRESS RELEASE – FOR IMMEDIATE RELEASE

Government announces proposed extreme abortion framework for Northern Ireland, goes far beyond law in England and Wales

The Government has today launched a consultation on a proposed abortion framework for Northern Ireland which goes far beyond the existing law in England and Wales, and that of the Republic of Ireland.

The proposals go far beyond what the Government was required to do by the Northern Ireland (Executive Formation etc) Act 2019. The proposal seeks to introduce an abortion framework without many of the current legal safeguards provided by the Abortion Act in England and Wales. 

The proposed framework which is being consulted on includes the following:

  • De facto abortion on demand through to either 22 or 24 weeks (Section 2.2 – page 15)
    • Abortion would be available ‘provided grounds similar to those in England and Wales are met in relation to mental wellbeing grounds’.
    • In England and Wales, this wording has in practice allowed for de facto abortion on demand.
  • Any “registered healthcare professional” would be able to provide terminations (Section 2.5 – page 20)
    • In England and Wales, abortions can only be performed by a registered medical practitioner (doctor) and the Abortion Act requires the approval of two doctors before an abortion can be performed.
    • Under the proposal being consulted on, there is no requirement that a doctor performs the abortion and no requirement for the approval of two doctors before an abortion can be performed.
    • ‘Any other registered healthcare professional’ could include healthcare assistants, pharmacists, nurses, midwives, health visitors, dieticians, art therapists and hearing aid dispensers.
  • No legal restrictions on locations where abortions can take place (Section 2.6 – page 21)
    • In England and Wales, the Abortion Act (1967) currently restricts abortion to hospitals or places approved by the Secretary of State. This means that abortions are available in a limited number of approved locations.
    • Under the proposal being consulted on, abortion locations would not be limited in law to hospitals or places approved by the Secretary of State and it would be left to Northern Ireland Commissioners to decide where abortions could take place.
    • This could open up abortion locations to the home use of both abortion pills, pharmacies, GPs surgeries, school nurse clinics, mobile abortion clinics and ‘telemed’ abortions.
  • Abortion for disabilities for any reason up to birth, possibly including Down’s syndrome, cleft lip and club foot (Section 2.3 – page 17)
    • Abortion for disabilities available through to birth when “The fetus if born would suffer a severe impairment, including a mental or physical disability which is likely to significantly limit either the length or quality of the child’s life” 
    • In England and Wales, wording that has appeared similarly restrictive  (‘that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’) has in practice allowed for abortion for disabilities including Down’s syndrome, cleft lip and club foot.  
  • Sex-selective abortion on demand through to 12 or 14 weeks (Section 2.2 – page 13)
    • Abortion on demand, without certification, through to 12 or 14 weeks would allow for sex-selective abortion to be available on-demand. 
    • There is also no specific provision banning sex-selective abortion through 22 or 24 weeks.
  • Conscientious objection protections are provided but would operate in a very different environment (Section 2.8 – page 26)
    • The proposal appears to seek to mirror legislation in England and Wales which does not provide protection for healthcare professionals undertaking ancillary, administrative and managerial tasks involved with an abortion procedure.
    • The proposed framework allows for a far wider group of health professionals beyond doctors to be involved with providing terminations in a far wider number of locations. This could mean that a far wider group of health professionals could be affected by the legislation and possibly involved in ancillary, administrative and managerial tasks where they are not provided protection.

The introduction of the new framework is proposed to take place on March 31st 2020. This will follow the current ‘limbo period’ in Northern Ireland, following the change in the law on October 22, where there is now no law protecting the unborn child through to 28-weeks. During this ‘limbo period’, there is only limited guidance from the Government, recommending how abortion access should be provided during this period.

Spokesperson for Right To Life UK Catherine Robinson said:

“The Government’s proposed abortion framework goes far beyond what the Government was required to do by the Northern Ireland (Executive Formation etc) Act 2019. 

The proposed framework drops many of the current legal safeguards provided by the Abortion Act in England and Wales. The proposals open up abortion provision to any healthcare professional, which could include pharmacists, nurses, midwives, healthcare assistants, art therapists and dieticians. It also drops the requirement that two doctors sign off on an abortion.

The proposal includes virtually no legal limit on the locations on where abortions can take place, potentially allowing for the home use of both abortion pills along with abortion provision in pharmacies, GPs surgeries, school nurse clinics, mobile abortion clinics and ‘telemed’ abortions.

In practice, abortion on demand would be available to either 22 or 24 weeks under mental health grounds. Abortion without certification would be available to either 12 or 14 weeks. This would allow sex-selective abortions to be available on-demand through this period with no specific provision banning sex-selective abortion through 22/24 weeks. 

The proposal would also see abortion for disabilities, including cleft lip, club foot and Down’s syndrome introduced to Northern Ireland, and possibly available right through to birth.

100,000 people in Northern Ireland are alive today because Northern Ireland did not accept the same abortion law that was introduced into Britain in 1967. This proposed abortion framework is a blatant attempt by the Government to further undermine the will of the people of Northern Ireland. It adds insult to injury after Westminster voted to impose new abortion laws on Northern Ireland and would likely lead to an even larger increase in the number of lives lost to abortion.”

ENDS

  • For additional quotes and media interviews contact 07907 272151 or email press@righttolife.org.uk 
  • For further information on Right To Life UK visit www.righttolife.org.uk
  • The full consultation document is available here.
  • The full report on the 100,000 lives figure quoted above is available here: https://bothlivesmatter.org/statistics   
  • Polling from ComRes shows that 66% of women and 70% of 18-34-year-olds in Northern Ireland rejected abortion law imposed on Northern Ireland from Westminster. The strongest support among age groups surveyed came from 18-34-year-olds, with 70% agreeing that they did not want abortion law imposed on Northern Ireland.
  • ComRes interviewed 1,013 Northern Irish adults online between 8th and 15th October 2018. Data was weighted to be representative of all Northern Irish adults. ComRes is a member of the British Polling Council and abides by its rules. Full data tables are available here: https://www.comresglobal.com/wp-content/uploads/2018/10/2018-Both-Lives-Matter.pdf

Doctors pressured mother to abort baby with Down’s syndrome at 38-weeks

Pregnant mothers who refuse to abort their children with Down’s syndrome are being pressured by some medical professionals to change their decision, a report has revealed.

One mother, whose child is now three-years-old, said medical professionals told her they could leave her baby with Down’s syndrome to die if it was struggling after birth.

Another mum told how even at 38 weeks pregnant she was being offered an abortion.

Emma Mellor, the mother of five-year-old Jamie, said: “In all honesty I think we must have been offered about 15 terminations”.

“At 38 weeks they made it really, really, really clear, that if I changed my mind on the morning of the induction to let them know, because it wasn’t too late; until the baby had started travelling down the birth canal, I could still terminate.”

Nicola Sparrow was offered an abortion at 37 weeks, after being told she would be induced the next morning.

The mother of three-year-old Lily said, “I was being told I still had options to whether I was going to have my baby or not and then also that if she was born not breathing or struggling to breathe, that they were willing to not help my baby, they were willing to just leave her.”

The research, from Positive About Down Syndrome (PADS), shows that even after being offered an abortion and informing medical professionals that they wished to keep their baby, 46 percent of mothers were asked again if they wanted to abort.

The findings highlight the ongoing systemic discrimination towards expectant parents of a baby with Down’s syndrome and the assumption by medical professionals that an expectant woman will terminate when discovering their baby has Down’s syndrome.

PADS are urging the Government to ensure expectant parents of a baby with Down’s syndrome are shown the same level of respect and care as any expectant parent.

They want MPs to support plans that will standardise information and support given by all medical professionals across the UK and to ensure access to relevant support groups is available at screenings.

Nicola Enoch, founder of PADS, said:

“Women are making life or death decisions influenced by outdated and prejudicial views by many medical professionals.

“Expectant women are not given accurate information about the reality of life with Down’s syndrome. There is very limited support and an overriding assumption to terminate. It is no wonder that 90 percent of women go on to terminate given these circumstances.

“I know I could have been one of those 90 percent, I would have considered termination had I received a definitive result and that terrifies me – how many women are being misinformed and misled.”

The survey gathered information from 1,410 mothers who have given birth to a child with Down’s syndrome since 2000.

Lynn Murray, founder of Don’t Screen Us Out, said:

“The inherent inequalities in antenatal screening have to be a consideration of all staff involved in screening programmes and must be addressed. As such, the social model of disability should take on a greater importance than previously afforded and positive awareness should remain uppermost in people’s minds.”

Dr Elizabeth Corcoran of Down’s Syndrome Research Foundation UK added:

“Research into the health issues affecting people with Down’s syndrome has been hampered and blocked by the ingrained belief that the only way to help the Down’s syndrome community is to reduce their numbers.

“Millions [of pounds] in funding has been poured into running and refining the screening [process] whilst only £5.33 per person per year is spent on research that could improve the lives of people with Down’s syndrome.”

(Image credit: Adobe Stock: File #234499068)

NZ PM Jacinda Ardern’s Bill to introduce abortion up to birth for children with Down’s syndrome – Parents speak out

Parents of children with Down’s syndrome, as well as leading Down’s syndrome advocacy groups, have spoken out against the New Zealand Government’s abortion Bill which will permit abortion up to birth for babies prenatally diagnosed with the condition. The Bill has been introduced following a pledge before the last election from the country’s Prime Minister Jacinda Ardern to make widespread changes to abortion law.

On the final day (19/09) for public submissions on the New Zealand Abortion Legislation Bill, a number of parents have publicly voiced their concerns about the harmful impact this Bill will have on people with Down’s syndrome.

The new abortion Bill

Currently, there is a 20-week time limit for disability-selective abortions in New Zealand law.

The proposed legislation will see this time limit removed and abortion for babies prenatally diagnosed with Down’s syndrome will be available up until birth, with the approval of a single doctor. 

In 2017, Saving Down Syndrome highlighted their concern that in her pledge to change the abortion laws, New Zealand Prime Minister Jacinda Ardern, would end up introducing abortion up to birth for babies with disabilities. In response, Jacinda Ardern made a commitment to not increase the time limit for disability-selective abortion.

Saving Down Syndrome, in their submission on the Abortion Legislation Bill, highlighted that Jacinda Ardern had broken that promise. Hundreds of people with Down’s syndrome and their families have signed an open letter calling on Jacinda Ardern to not break her promise.

In their submission, Saving Down Syndrome highlighted that the relevant clause in the proposed New Zealand legislation, only requires one registered health practitioner, which could include a single nurse. By contrast, in Victoria, Australia – which has a similar law – there is a higher threshold requiring two doctors two approve a late term abortion.

In the handful of jurisdictions that have a similar clause, in practice this has allowed for abortion for disabilities including Down’s syndrome right up to birth. In fact, there have been over 1,600 abortions of babies with a disability in Victoria, Australia, since the law was changed in 2008.

Pressure to abort

Many parents recounted the pressure they were put under by health workers to either undergo prenatal genetic testing for Down’s Syndrome (with the assumption that the mother would then choose an abortion) or to have an abortion if genetic tests suggested their child had an Down’s Syndrome.

Aggie Brown, whose adopted son Reuben has Down’s Syndrome, said his birth mother was put under constant pressure to have an abortion once her child was prenatally diagnosed with having Down’s Syndrome.

“Unfortunately her GP was strongly asking her to consider having an abortion and was actually giving the birth mum all the worst scenario if she decided to keep the baby,” she said.

“The birth mum actually dreaded to go to her health visits because it was always brought up by the GP and we actually applaud the birth mum for sticking to her guns.”

Rachel Price, a New Zealand mother who has a daughter, Eden, with Down’s Syndrome, recounted a very similar experience during a subsequent pregnancy. Even when Rachel said that she did not want genetic testing on multiple occasions, the clinic she attended made an appointment for her anyway, which she told them to cancel.

“We were under immense pressure to go and have genetic counselling,” she said.

“But why? If we have another child with Down’s Syndrome we are quite OK with that and we will carry on with the pregnancy.”

The representative for the New Zealand Down Syndrome Association, Diane Burnett also has a daughter, Jada, who has Down’s Syndrome, and she said the social and medical pressure was intense when she wanted to opt out of the prenatal screening process.

The women said the developments in prenatal screening aimed at detecting disabilities has led to an assumption that women will want an abortion if they find out their baby might have Down’s Syndrome.

They were concerned that New Zealand could edge closer to what has happened in countries such as Iceland, which has an almost 100% abortion rate for unborn babies prenatally diagnosed with Down’s Syndrome.

One parent, whose son has Down’s syndrome, went so far as to say routine abortion of babies diagnosed with Down’s Syndrome was a form of eugenics.

“I think New Zealand can do better than Iceland. I feel really saddened to hear that Iceland abort 99 percent of people that have Down’s Syndrome,” she said.

“To me that seems like a eugenics programme, and that’s just madness.”

What’s it actually like to have a child with Down’s Syndrome?

In addition to the pressures they felt in regard to abortion, all the parents were eager to let others know how happy their children with Down’s Syndrome were, and the one-sided nature of the discussion which rarely shows this.

Diane Burnett of the New Zealand Down Syndrome Association said women are just not given the full picture when they find out. “They are given very medical and clinical information,” she said.

“Figures on heart conditions and health conditions and hearing loss and eyesight problems, and people with Down’s Syndrome are not the only people who have those issues.”

“They’re not getting what it is actually like to have a child with Down’s Syndrome.”

Aggie Brown whose adopted son had Downs’ Syndrome said “Most people know that with Down’s Syndrome they carry the happy gene, they are always smiling,” she said.

“They do have their moments, they are strong-willed, but overall, for Reuben, it’s very rare that he’s cranky. He’s always a happy-go-lucky child and we are very fortunate.”