National Down Syndrome Policy Group

@NDSPolicyGroup

The NDSPG supports people with DS to have a say in the formation of policy in matters that impact their lives. We provide the secretariat for @APPGDS

Joined March 2021

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National Down Syndrome Policy Group Retweeted

Lord (David) Alton@DavidAltonHL · Jul 23

Peers have a duty to scrutinise the flawed assisted suicide bill - Politics.co.uk @Tanni_GT @BnsJaneCampbell @DamianHinds @StephanieFraser @frankcottrell_b @kesleeman @CarolUHS @dsnorthnorth @russrook @Live_Die_Well @ShabanaMahmood @thelizcarr - politics.co.uk/comment/2025/0…

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National Down Syndrome Policy Group Retweeted

Portsmouth Down Syndrome Association 💚@PortsmouthDSA · Jul 19

The Council for Disabled Children @CDC_tweets has published/updated 3 sets of guidance for schools on their duties towards disabled pupils commissioned by the DfE @educationgovuk covering schools, early years and FE colleges. shorturl.at/KrGmr All feedback welcome.…

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National Down Syndrome Policy Group Retweeted

Paul Scriven🔶️🇺🇦@Paulscriven · Jul 16

This is about my wonderful and beautiful nephew Myles who was let down by Drs @CHFTNHS and Dalton Surgery in Huddersfield .They didn't see him as an equal human being. This happens far too often in the NHS . It has to change itv.com/news/2025-07-1… itv.com/news/2025-07-1…

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Rosa Monckton@MoncktonR · Jul 15

'My disabled son was punched' - how a CCTV error exposed major abuse scandal - BBC News. Man’s inhumanity to man. Inhumanity to our most vulnerable citizens. Cruelty beyond any understanding. bbc.co.uk/news/articles/…

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National Down Syndrome Policy Group@NDSPolicyGroup · Jul 2

🥇🥈 🥉 Huge congratulations to one of our Advisory Group Leaders James, who won 2 golds, a silver and a bronze with the Reading Cygnets at the Harry Wild LD Open last Saturday! 👏🏻 👏🏻 👏🏻

NDSPolicyGroup's tweet image. 🥇🥈 🥉 Huge congratulations to one of our Advisory Group Leaders James, who won 2 golds, a silver and a bronze with the Reading Cygnets at the Harry Wild LD Open last Saturday! 👏🏻 👏🏻 👏🏻

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 27

Students with #DownSyndrome were included in the school census for the first time this year, but data won’t be published due to early data collection issues. @educationgovuk confirms improvements are underway. We’re all hopeful next year’s data will be more accurate and complete.

NDSPolicyGroup's tweet image. Students with #DownSyndrome were included in the school census for the first time this year, but data won’t be published due to early data collection issues. @educationgovuk confirms improvements are underway. We’re all hopeful next year’s data will be more accurate and complete.

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 23

What a great invention for those who need help with balance: “Ollie, who has Down syndrome, used a harness system at Exist Skatepark in Swansea because he wanted to skateboard with his friends.” bbc.com/news/articles/…

NDSPolicyGroup's tweet card. Ollie, 12, wanted to skateboard with his friends without needing his parents' help.

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 19

Concerns around assisted dying voiced by @NDSPolicyGroup @DSRF_UK

TThe Independent@Independent · Jun 19

Assisted dying vote on a knife edge with just hours to go before crunch vote independent.co.uk/news/uk/politi…

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 19

It’s utterly appalling how some MPs have treated people with Down syndrome and other learning disabilities in this Bill. If we are a civilised society, we should prioritise our care of the most vulnerable.

NNational Down Syndrome Policy Group@NDSPolicyGroup · Jun 19

“urgent concerns raised by our organisations & members regarding the Terminally Ill Adults (End of Life) Bill, particularly its implications for individuals with Down syndrome and learning disabilities.” @nmdacosta @DamianHinds @Tanni_GT @thelizcarr independent.co.uk/news/uk/politi…

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 19

NDSPolicyGroup's tweet card. New polling shows major fears about the impact of legalised assisted dying on those with learning disabilities

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DSRF_UK@DSRF_UK · Jun 18

A young woman with #Downsyndrome was nearly denied treatment. A #capacityassessment was recorded at 3am—while she & her mum were asleep. This is Jen’s story. It’s why we must oppose #AssistedDyingBill Read the full blog: dsrf-uk.org/jensstory/ #AssistedDying #DisabilityRights

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 17

If MPs have even the slightest doubt about the adequacy of effective and enforceable safeguards, they have a legal and moral duty to protect the vulnerable - and must vote no to the #AssistedDyingBill on Friday. #NotThisBill @tommyjessop

NDSPolicyGroup's tweet image. If MPs have even the slightest doubt about the adequacy of effective and enforceable safeguards, they have a legal and moral duty to protect the vulnerable - and must vote no to the #AssistedDyingBill on Friday. #NotThisBill @tommyjessop

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Lord (David) Alton@DavidAltonHL · Jun 17

Ahead of 3rd Reading of the Assisted Dying Bill MPs should read concerns raised by those working with individuals with Down syndrome & learning disabilities. I too believe the bill remains flawed & I join in urging Parliament to fulfil its duty to safeguard the vulnerable.

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 16

Like many disability groups & medical bodies incl. @RCPhysicians & @rcpsych, we believe the #AssistedDyingBill is deeply flawed. 60+ orgs have signed an open letter warning of risks to the most vulnerable. Before Friday’s Third Reading urge your MP to act #AssistedDyingBill

NDSPolicyGroup's tweet image. Like many disability groups &amp; medical bodies incl. @RCPhysicians &amp; @rcpsych, we believe the #AssistedDyingBill is deeply flawed. 60+ orgs have signed an open letter warning of risks to the most vulnerable. Before Friday’s Third Reading urge your MP to act #AssistedDyingBill

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 12

Joint statement from @RCPhysicians and @rcpsych sent to all MPs. It couldn’t be clearer: the Bill does not provide sufficient protection for vulnerable people. And yet… hundreds of MPs will vote for this Bill based on a campaigning soundbite that it’s ’safest in the world’.

JJess Asato MP@Jess4Lowestoft · Jun 12

MPs have just received a joint statement from the Royal College of Physicians and Royal College of Psychiatrists.

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 4

Thank you Minister @SKinnock @DHSCgovuk for working with the @APPGDS & @NDSPolicyGroup to ensure the #DownSyndromeAct guidance is meaningful, robust & will improve outcomes for all. Reassuring timelines are confirmed for public consultation. @DamianHinds @garrettflo #AndrewCooper

NDSPolicyGroup's tweet image. Thank you Minister @SKinnock @DHSCgovuk for working with the @APPGDS &amp; @NDSPolicyGroup to ensure the #DownSyndromeAct guidance is meaningful, robust &amp; will improve outcomes for all. Reassuring timelines are confirmed for public consultation. @DamianHinds @garrettflo #AndrewCooper

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National Down Syndrome Policy Group@NDSPolicyGroup · Jun 3

A packed agenda incl. delays & ongoing issues with the #DownSyndromeAct guidance, the #AssistedDyingBill, & reported changes to EHCP eligibility. Thanks to Cambridge Uni @CIDDRG for their Alzheimer’s presentation & @garrettflo for sharing the Advisory Group ICB challenge results.

NDSPolicyGroup's tweet image. A packed agenda incl. delays &amp; ongoing issues with the #DownSyndromeAct guidance, the #AssistedDyingBill, &amp; reported changes to EHCP eligibility. Thanks to Cambridge Uni @CIDDRG for their Alzheimer’s presentation &amp; @garrettflo for sharing the Advisory Group ICB challenge results.

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National Down Syndrome Policy Group Retweeted

Portsmouth Down Syndrome Association 💚@PortsmouthDSA · May 30

Very disappointing to hear of yet more delays with the #DownSyndromeAct guidance consultation. Let’s hope this time is used productively by @DHSCgovuk to make the necessary improvements to the document that will make a real and meaningful difference. #HearOurVoice

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National Down Syndrome Policy Group@NDSPolicyGroup · May 30

Disappointing that the #DownSyndromeAct guidance is yet further delayed, but this provides an additional opportunity for the @DHSCgovuk to listen to ongoing concerns about the content & work productively with stakeholders to create robust & meaningful guidance, now long overdue.

LLord (David) Alton@DavidAltonHL · May 30

Minister @SKinnock explains why the consultation on the Down Syndrome Act 2022 - pioneered in @UKParliament by @LiamFox & @BaronessHollins has been delayed. @APPGDS @DamianHinds @DownSyndrome @DownSyndromeLPL @HumanRightsCtte @LordSpeaker @CommonsSpeaker @HouseofCommons

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National Down Syndrome Policy Group@NDSPolicyGroup · May 24

Congratulations 🥳🤩🍾 Fionn and Jonathan each were awarded at the Rémy Martin Irish Men of the Year Awards, Fionn for 'Diversity & Inclusion Advocate' and Jonathan (on behalf of Fionnathan Productions) for 'Male Team of the Year'. @fionnathan @tommyjessop

NDSPolicyGroup's tweet image. Congratulations 🥳🤩🍾
Fionn and Jonathan each were awarded at the Rémy Martin Irish Men of the Year Awards, Fionn for 'Diversity &amp; Inclusion Advocate' and Jonathan (on behalf of Fionnathan Productions) for 'Male Team of the Year'.
@fionnathan
@tommyjessop

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