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The Down Syndrome Bill passed through the 3rd reading in the House of Commons on 4th February and had its first reading in the Lords on 8th February. Below is Dr Liam Fox MP’s address to the House for the 3rd reading.
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Amendment to the Criminal Justice Act
National Down Syndrome Policy Group welcomes new amendment to exclude Down syndrome from late abortion
A move proposed by Sir Liam Fox, MP, former NHS Doctor and GP, to address discriminatory practices associated with Down syndrome, would introduce an upper gestational limit for abortions of foetuses with Down syndrome equal to the upper gestational limit for most other abortions.
National Down Syndrome Policy Group (NDSPG) who worked with Sir Liam Fox MP to create the Down Syndrome Act 2022 wholly welcomes this amendment.
On this occasion Sir Liam Fox has tabled an amendment to the Government’s Criminal Justice Bill intended to specifically exclude a diagnosis of Down syndrome as a reason for late abortion.
If successful, this change could mean that pregnant women will not be offered abortions at the later stages of pregnancy on the basis that the baby has Down syndrome.
Current legislation generally restricts abortion after 24 weeks gestation unless the baby has a disability such as Down syndrome or another congenital condition in which case abortion is legal up to birth.
Pregnancy screening typically takes place well before 24 weeks gestation yet some women who find out during pregnancy screening that their baby will have Down syndrome and who choose to continue with their pregnancy report that they are offered abortion until the point that their baby is due to be born.
Heidi Crowter is a founding member of the National Down Syndrome Policy Group who has Down syndrome. In 2020 she took the UK Government to court in a challenge to the law allowing abortion for disability stating that the law is discriminatory and undermines the value of people with Down syndrome’s lives. A judge ruled against her case stating that it was for the lawmakers to decide, not the judiciary.
Life expectancy, health outcomes and social progress for people with Down syndrome has increased dramatically over the last 50 years. However Down syndrome has been considered as one of the cases eligible for late abortion offers since 1990 when UK abortion law was amended to allow abortion up to birth if there is a ‘substantial risk’ that the baby would be ‘seriously handicapped.’
BACKGROUND
Sir Liam Fox’s private members’ bill introduced to the Westminster Parliament in 2021 led to the establishment of the ground-breaking Down Syndrome Act in April 2022, intended to improve the lives of people living with Down syndrome.
Abortion Act 1967 was amended in 1990 to allow pregnancy to be terminated at any stage where it is deemed 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.”
According to NHS Inform, most individuals with Down syndrome have mild to moderate learning disabilities.
The National Down Syndrome Policy Group is a UK based charity comprising of officers with and without Down syndrome which was established to raise the profile of the unmet needs of people with Down syndrome.
Rachael Ross MBE of the NDSPG says:
“Most individuals with Down syndrome experience mild to moderate learning disabilities. However, with appropriate support, these individuals can enjoy fulfilling and productive lives, accomplishing more today than ever before. Given the progress in medical science and prenatal screening, it is essential to reconsider outdated and discriminatory laws that permit the termination of pregnancies diagnosed with Down syndrome until birth, based solely on a diagnosis of Down syndrome.”
Heidi Crowter, Down syndrome activist and a founding member of National Down Syndrome Policy Group says:
“I support this amendment in this law that Dr Liam Fox is suggesting because I am a young lady with Down syndrome and I want people with Down syndrome to be shown in a positive light.
I have been fighting for a change to this law for 4 years now because we are now treated equally after birth so we should be treated equally before birth too.
This is so important to me because when I was growing up my parents always treated me the same so it was a shock to me when I found out that we are not treated the same in the womb.
This law was made in 1967 when people with Down syndrome were put in institutions and we couldn’t even go to school all because of our extra chromosome. The world has moved on and the law should too.”
Tommy Jessop, author, first actor with Down syndrome on prime-time TV, star of BBC’s Line of Duty crime drama and National Down Syndrome Policy Group Ambassador says:
“It really is about time it should be made illegal. At long last we might be treated equally and respectfully. Our lives truly are worth living for.”
Sir Liam Fox, MP, former NHS Doctor and GP says:
“On average, 25 babies with Down syndrome are aborted each year between 24 and 40 weeks. This is an absolute travesty.
“People with Down syndrome are not second-class citizens. Through the Down Syndrome Act 2022, we have already passed landmark legislation with both cross-party and government support. The Act made England the first country in the world to legislate specifically for people with Down syndrome, and the guidelines of the Act are currently being written to improve the educational, healthcare, and social care provisions for those with Down syndrome.
“The current law around the termination of a pregnancy for a foetus with Down syndrome is contradictory to the aims and values of the Equality Act 2010. Indeed, the Equality Act clearly defines discrimination as when “A person (A) discriminates against another (B) if, because of a protected characteristic, A treats B less favourably than A treats or would treat others.” By definition, under the Abortion Act, a baby with Down syndrome is therefore not given the same chance of life as a baby without Down syndrome.
“During Down Syndrome Awareness Week and ahead of World Down Syndrome Day 2024 on Thursday 21st March, it is only right we equalise the abortion time limits, another step along the way to ensuring full equality for those with Down syndrome with the rest of society.”
‘THE FIRST OF ITS KIND: HISTORIC & GROUNDBREAKING DOWN SYNDROME BILL IS SET TO BECOME LAW’
A Bill focused on improving the lives of those living with Down syndrome is expected to clear its first Commons hurdle today (Friday 26th November) after the Government announced it will support it to become law.
The Down Syndrome Bill has been introduced as Dr Liam Fox’s Private Member’s Bill. Dr Fox was selected, for the first time in his thirty years as an MP, in the Private Members’ Ballot to bring forward a Bill of his own choosing for this Parliamentary session – only twenty MPs each parliamentary session are drawn at random in the ballot. Dr Fox, a former NHS Doctor and GP, decided to use this unique opportunity to bring forward the ‘Down Syndrome Bill’ as his Private Members’ Bill.
The Bill is co-sponsored by cross-party MPs and politicians from across the political divide attended an event with Dr Fox in Parliament earlier this week in support of the Bill.
The Down Syndrome Bill would mean the establishment of a Down Syndrome Act and will be the first of its kind in the world. The Act would improve the provision and outcomes for all those living with Down syndrome in England. This will encompass, amongst other areas, maternity care, education, health & social care and employment.
Campaigners are calling for the Bill to receive Royal Assent before World Down Syndrome Day on 21st March 2022.
TV Personalities have also shown their support for the Bill, including: CBeebies presenter and self-advocate George Webster; BBC’s Line of Duty actor Tommy Jessop; writer and creator of Call the Midwife Heidi Thomas; and the actress Sally Phillips.
The National Down Syndrome Policy Group (NDSPG) has launched a campaign in support for the Bill. The ‘Stand Up for Down Syndrome’ campaign includes a Change.org petition which has attracted the signatures of 30,400 people with Down syndrome, their families and supporters.
Thousands of constituents have written to their MPs as part of the campaign urging them to support the Bill.
Many of those taking part in the campaign have shared photos of their children with Down syndrome on social media to help send a strong message about the importance of the Bill.
The NDSPG have organised a gathering outside Parliament today (Friday, 26th November) at 13:30hrs so that those in the Down syndrome community can publicly demonstrate their support of Dr Liam Fox’s Bill on the day of its second reading in the House of Commons.
BATTERSEA POWER STATION CELEBRATION
If the Bill passes Second Reading in the House of Commons, which it is expected to do so, then Battersea Power Station in London will be lit up in blue, pink, purple on Friday evening – to celebrate this historic and ground-breaking moment.
Dr Liam Fox MP, the Down Syndrome Bill Sponsor said:
“I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome. My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome. The second is to ensure that current provision of services is improved. The third is to look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents.”
George Webster, CBBC presenter and one of the Founding Officers of the NDSPG said:
“We are all very excited that Dr Liam Fox is sponsoring a Bill with the aim of improving the lives of people living with Down syndrome. I would like to see the Bill becoming law, then I think everyone like me with Down syndrome will get better healthcare, more access to services and be more included in society. It is possible. It happens for some now, but it shouldn’t be a lottery.”
Tommy Jessop, actor from BBC’s Line of Duty crime drama and self-advocate said:
“Everyone needs help now and then. We just need chances in life like anyone else.”
Heidi Thomas, Writer and Creator of Call the Midwife whose late brother had Down syndrome said:
“Having David as a sibling enabled me to live my best life – he taught me so much, and brought joy to all who loved him. But I want everyone who has Down syndrome to live their best life, with their gifts acknowledged and their specific needs embraced, understood, and enabled. The Down Syndrome Bill could really open the door to that, and it has my full support.”
Peter Brackett, Chair of the NDSPG said:
“The Down Syndrome Bill is essential to address the specific deficiencies and barriers faced by people who have Down syndrome and we hope that MPs across all parties will vote for this Bill. We will work hard to support any information needs those politicians may have to ensure they are fully informed about the issues before the vote. Societal infrastructures need to be in place to progress the rights of this community. When enacted we will finally have legislation to ensure every stage in the lives of these people are protected and enhanced. Only through this can people with Down syndrome achieve their rightful place as recognised individuals, contributing towards a better, inclusive society.”
END
The first reading of the new Down Syndrome Bill
We would like to engage with local support groups up and down the country. Please get in touch.
With the incredible news that Dr Liam Fox MP has tabled a private members bill entitled the Down Syndrome Bill, we have a lot of very exciting work ahead of us! The second reading of the Bill will take place on 26th November and ultimately we hope the Bill will become an Act of Parliament early in 2022. The Act will require the Government to form a strategy addressing the needs of people with Down syndrome and we intend to be deeply involved in the consultation process, together with the All Party Parliamentary Group for Down Syndrome, which was launched on Wednesday 12th May 2021.
Dr Liam Fox MP introduces Down Syndrome Bill to Improve Life Outcomes
A Down Syndrome Bill is to be introduced to Westminster by Dr Liam Fox MP in the next Parliamentary session later this year. If successful, it will lead to the establishment of a Down Syndrome Act and a national strategy to improve provision and outcomes for all those living with Down syndrome in the UK. The Autism Act which became law in 2009 preceded the establishment of the national strategy to help meet the needs of adults with autistic spectrum conditions in England. The Down Syndrome Act will go further, identifying needs in all areas, for all individuals with Down syndrome across the whole of the UK. This will encompass, amongst other areas, maternity care, education, health, social care and employment.
The National Down Syndrome Policy Group, in coalition with the All-Party Parliamentary Group for Down Syndrome, has been lobbying for the long overdue Down Syndrome Act and have released a film featuring trustees who have Down syndrome, highlighting some of the areas where they hope to see positive change in the future.
Dr Liam Fox MP, the Down Syndrome Bill Sponsor said,
“I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome. The full title is ‘A Bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes’.”
“My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. The second is to ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision. The third is to look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents. By giving due thought to the issues today we can prevent avoidable human tragedies in the future.”
Actor and Trustee for the National Down Syndrome Policy Group (NDSPG) George Webster said:
“A Down Syndrome Act. Why didn’t we think of this before?!”
“We are all very excited that Dr Liam Fox is sponsoring a Bill with the aim of improving the lives of people living with Down syndrome.”
“I would like to see the Bill becoming law, then I think everyone like me with Down Syndrome will get better healthcare, more access to services and be more included in society. It is possible. It happens for some now, but it shouldn’t be a lottery. “
Peter Brackett, Chair of the NDSPG said:
“For too long the voice of the Down syndrome community has not been heard. We are delighted that the Down Syndrome Bill will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.”
“Having lobbied hard for this opportunity, our group will be fully behind Dr Liam Fox and the Down Syndrome Bill on its journey through Parliament, in line with our aim of raising the profile of issues affecting people with Down syndrome, their families and carers.”
Line of Duty star with Down syndrome backs launch of new Down syndrome All-Party Parliamentary Group at Westminster
BBC’s Line of Duty star Tommy Jessop is backing the launch of the new All-Party Parliamentary Group (APPG) on Down Syndrome, which will be launched at an inaugural meeting at Westminster tomorrow.
A number of Down syndrome advocacy and support groups along with a cross-party group of MPs, led by SNP MP Dr Lisa Cameron and Labour MP Matt Western, have come together to launch the new All-Party Parliamentary Group on Down Syndrome.
The new group has been launched to raise issues affecting people with Down syndrome and their families and carers, as well as to promote equality and respect at all stages of life, to campaign for equal access and support in all areas of life and to highlight the innate worth of people with Down syndrome and the contribution they make.
The first meeting will include a speech by advocates with Down syndrome welcoming the establishment of the group and highlighting the issues that the group will be seeking positive change on. These issues range from maternity care for parents expecting a baby with Down syndrome to the matter of premature death for people living with Down syndrome.
APPG members will be supported by the newly-formed National Down Syndrome Policy Group in the Secretariat role. The policy group is comprised of interest groups and individuals who have Down syndrome, therefore linking the parliamentary group to others with knowledge of the issues important to the wider Down syndrome community.
Line of Duty actor Tommy Jessop said:
“I welcome the new All-Party Parliamentary Group for Down Syndrome. I hope this will raise awareness of people living with Down syndrome and who we really are so that we really do have a voice to speak up for ourselves and other people”.
“I want to see people with Down syndrome treated equally with others before and after they are born. We are the only group of people in the UK where people try to end our lives before we are born just because we have Down syndrome. This is not fair. It scars our lives and causes mental health problems”.
Self-advocate Heidi Crowter, from Coventry, said:
“We hope that the members of the All-Party Group can use their powers and their energy to help make positive change for people like me and my husband James who has Down syndrome”.
Conservative MP Elliot Coburn, the group co-chair, said:
“I was delighted to be asked to join the new All-Party Parliamentary Group on Down Syndrome, and to become a Vice Chair. People with Down Syndrome deserve a strong voice in Parliament to stand up for them and their families, and to press for greater support to help with the child’s development and for the family”.
Government Minister Caroline Dinenage said:
“I’m so delighted to support the All-Party Parliamentary Group for Down Syndrome. I am all in favour of action to ensure people with Down syndrome lead healthy, active and independent lives – that their talents are recognised and their voices heard”.
Nicola Enoch from the National Down Syndrome Policy Group said:
“We are striving to ensure that people with Down syndrome will have the opportunity to have their voices heard at Parliament. For too long their views have not been canvassed or heard; the APPG will provide a public platform for people with Down syndrome to speak”.
ENDS
- For more information, see the Down Syndrome Policy Group website www.dspg.uk or email info@dspg.uk
- For interviews, contact Lynn Murray on 0784 0966 736 or email info@dspg.uk
- People with Down syndrome who are trustees of the Down Syndrome Policy Group introduce themselves: https://www.youtube.com/watch?v=-zL0naw24a0&ab_channel=DownSyndromePolicyGroup
- Sharing the News Report 2019 – The maternity experience of parents of a baby with Down syndrome https://downsyndromeuk.co.uk/flipbook.html
- Birth incidence, deaths and hospitalisations of children and young people with Down syndrome https://bmjopen.bmj.com/content/10/4/e033770
- Life expectancy and causes of death of people living with Down syndrome http://www.sldo.ac.uk/our-research/life-expectancy-and-mortality/life-expectancy-and-causes-of-death-of-people-with-down-syndrome/
- Down syndrome abortion figures are expected to increase as NIPT is rolled out across NHS hospitals. The number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have introduced the new test. https://www.thetimes.co.uk/article/new-test-brings-big-fall-in-birth-downs-babies-c89krkjcx
The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives.