All Party Parliamentary Group (APPG) for Down syndrome being formed!


Over the past few years, a number of parent led organisations have been campaigning and lobbying in Parliament around issues, particularly in maternity care, that our community faces.


We discovered that there has not been an APPG for Down syndrome since 2015, so some of the groups have created an alliance to form an APPG. This will provide an opportunity for the views of people with Down syndrome and their families to be heard and addressed at Parliament. The APPG will give 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.


An All Party Parliamentary Group (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 has to have at least one member from the party in government (Conservative) and at least one from the main opposition party (Labour).


We have written to all Parliamentarians to invite them to join our APPG. It would be really powerful if as many people as possible could make contact with their local MP to request that they join our APPG on Down syndrome. Anybody who is allowed to vote can contact their MP and request they join – so we are asking people with Down syndrome to write and will be supplying an easy read version of this document together with a template. We hope that parents, siblings, grandparents, friends, professionals – anyone and everyone who is keen that the voices of people with Down syndrome are heard at Parliament will contact their MP.


We will be inviting people with Down syndrome to be involved with the APPG by participating in meetings and focus groups. If you have Down syndrome and are interested in being involved or have a family member with Down syndrome who is interested, please email dsappg@gmail.com


If you can add some of your own information in the first paragraph, it makes it more relevant and powerful. Please copy us into your email so we can record which MPs have been contacted. Email dsappg@gmail.com

MP letter DS APPG


Dear (insert name of MP)

I am writing to you both as a member of your constituency and also proud parent/sibling/grandparent/teacher etc to (insert name) a (young person/child/adult) with Down syndrome. We would ask that you kindly consider joining the APPG for Down syndrome that is being formed to ensure the voices of those with Down syndrome including my (son/grandson/brother/student/friend etc) are heard at Parliament.

A coalition of national and regional groups have formed to act as the secretariat to the APPG.

The statement of purpose for the APPG is to campaign for equal access and provision to ensure equality and promote respect at all stages of life for people with Down syndrome.


Over recent years there have been huge advances in medical and educational development to enable people with Down syndrome to live full, rewarding and long lives, yet ironically whilst the future is looking so bright for our children and young people, outdated attitudes and legislation, discriminate against people with Down syndrome from the womb to the grave.


  • In maternity services there is a blatant negative bias, with 69% of expectant women being offered a termination in the same conversation as being advised baby has Down syndrome.


  • Termination to full term is permitted on the grounds of baby having Down syndrome. Women’s choices to continue are not supported with no care pathway and pressure to terminate – expectant women being told ‘it’s not too late’, at 36 weeks.


  • In health care, the LeDeR report has cited that people with learning disabilities die on average 16 years younger than people without. It is estimated that 1,200 people with a learning disability die avoidably in the NHS each year.


  • Employment opportunities are woefully inadequate, with only 6% of adults with a learning disability being in paid work.


  • The annual research spending per person with Down syndrome to improve quality of life is currently in the region of £16.52, of which only £5.33 is towards treatment studies to test interventions.


People with Down syndrome deserve better and with your support we can ensure that their voices and views are represented to ensure equality for all.


I look forward to hearing favourably from you, should you require any further information please do not hesitate to contact me or the coalition by emailing dsappg@gmail.com


Yours sincerely

(insert your name)