Campaigning

At DSUK we are proud to campaign and lobby to ensure the voices of those with Down syndrome are heard and acted on.

DSUK’s CEO Nicola Enoch and Trustee Caroline Warren have been proactive in taking our concerns to Parliament around the discrimination, lack of information and support experienced by many parents in maternity care since 2018.

We have also been very actively involved in the formation of the All-Party Parliamentary Group on Down Syndrome and the ensuing Down Syndrome Act 2022.

Down Syndrome Act 2022

The Down Syndrome Act 2022 was introduced as a Private Member’s Bill by Dr Liam Fox MP. After successfully passing through the House of Commons with the backing of the Government, Baroness Sheila Hollins led the Bill through the House of Lords, when it became enacted on 1 April 2022, and received Royal Assent on 28 April 2022.

The Act aims to improve access to services and life outcomes for people with Down syndrome. The Act requires the Secretary of State to publish guidance for relevant authorities (for example, NHS hospitals or local councils) on the steps it would be appropriate for those authorities to take to meet the needs of people with Down syndrome.

You-can't-put-me-Down syndrome

In October 2022 we hosted You-can’t-put-me-Down-syndrome at the Houses of Parliament – a photographic campaign that aims to challenge and rewrite the medical maternity narrative – show casing young people and adults with Down syndrome living their best lives, each a valued and loved family member, each deserving of a maternity care system that no longer perpetuates and promotes stigma and discrimination towards them.
We are extremely grateful to WEP Clinical and CareTech Foundation for their financial support.
We met with over 60 Parliamentarians who admired the images and messaged, and signed our pledge to address discrimination that prevails in antenatal screening.

Language matters

We are passionate about the importance of language being respectful towards those with Down syndrome.

We have campaigned for several years to ensure the language on the NHS website and communications from maternity units is non-directive, neutral and respectful.
We have a range of resources that are available to raise awareness, challenge attitudes and address unacceptable practices.

The maternity experience

In October 2019 we published our report ‘Sharing the news the maternity experience of having a baby with Down syndrome’, supported by the Down’s Syndrome Research Foundation and Don’t Screen Us Out.

The report corroborated our concerns that women are expected and pressured to screen for Down syndrome and to terminate if baby has Down syndrome. It also highlighted that many women are not provided with adequate information or support, and that their decision not to screen and not to terminate is too often undermined and questioned.

We are working hard to address these issues by lobbying Parliamentarians and the relevant professional and national bodies, including NHSE&I, PHW, HEE, SoR, the RCOG and the RCM.

Trustees of DSUK have visited the Palace of Westminster to speak to Parliamentarians every year since 2018 and in October 2019 hosted a week-long exhibition in The Upper Waiting Hall above ‘The House’.

We spoke to many MPs from the main political parties and members from the House of Lords, and the majority understood the issues our community faces and are ready to help. Many have now joined the All-Party Parliamentary Group (APPG) that we are a part of, getting the issues heard at the highest level.

Freedom of Information research

DSUK regularly conducts Freedom of Information (FoI) research to obtain data around specific topics.

Most recently we collected data around the letter sent out to expectant parents with their screening results and this corroborated many of our concerns. 46% of Trusts continue to refer to the chance of baby having Down syndrome as a ‘risk’ instead of chance or likelihood. We followed this up by writing to the CEO of each Trust to request this be addressed. We have received personal responses from many, who confirm that they are amending their communications to ensure the language used is respectful and neutral.

We will continue to conduct such research until every Trust uses language that is respectful to people with Down syndrome, and non directive to expectant parents.

All-Party Parliamentary Group for Down Syndrome (APPG)

DSUK has been instrumental in collaborating with other proactive Down syndrome groups to create the National Down Syndrome Policy Group (NDSPG), to provide the secretariat to launch the All-Party Parliamentary Group (APPG) on Down syndrome in May 2021.

There had not been an APPG for Down syndrome since 2015, so we were delighted to be involved in ensuring the views of people with Down syndrome and their families can be heard and addressed at Parliament. The APPG provides our community a platform to challenge some of the issues our families face and to raise awareness about living with Down syndrome in modern Britain.

The NDSPG has created an Advisory Group to which adults with Down syndrome are invited to become members to be able to share their views and feedback. If you are interested in finding out more about the Advisory Group please email contact@ndspg.org.

An APPG is a group of members from the House of Commons (Members of Parliament) and the House of Lords (Peers). It is all-party because it must have at least one member from the party in government (Conservative) and at least one from the main opposition party (Labour). Anybody who is allowed to vote can contact their MP and request they join – so the NDSPG has been asking people with Down syndrome to write and has supplied an easy read template.

We'd love to hear from you!

0330 111 2121