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National Down Syndrome Policy Group Consultation now OPEN 

The National Down Syndrome Policy Group is delighted to announce that our online consultation for gathering information for the Down Syndrome Act is live and can be accessed via .

Let's hear from Founding Officer, George, about why we need to take part:

The NDSPG consultation is very important because it will help us collect information about the things that matter to people who have Down syndrome, their families, carers and professionals who support them. We will share some short videos with you made by people with Down syndrome and their families and ask a series of questions about different areas of life including education, employment healthcare and social care.

The information we get from the NDPSG consultation will help us better understand what works well and the areas that need improving. We will share this information with the senior civil servants who are writing the Guidance that is required by the Down Syndrome Act (2022) which will have far-reaching consequences for those with Down syndrome. It is up to our community to tell them about our experiences, our ambitions and the things that work and the things that frustrate and make life harder than it needs to be.


We cannot emphasise enough the importance of this NDSPG consultation because we will not have the opportunity to provide evidence about life with Down syndrome in such a powerful way again. This is OUR moment, this is OUR opportunity to make a difference by making sure the guidance is powerful and effective.



1) Is the NDSPG consulting on behalf of the government?

No. This is our own consultation but we will share the findings with the civil servants working on the Guidance. The government will run its own consultation later in the year.

2) If the government is doing their own consultation why should I do this one too?

We do not know yet when the Department of Health and Social Care will launch their consultation or what sort of information they will be looking to gather. By doing our own NDSPG consultation we can feed our evidence to the DHSC and make sure that we cover all the areas that matter to you. We would kindly ask people to complete both the National Down Syndrome Policy Group’s and the DHSC’s consultations to make sure your views are properly recorded.

3) How much time will it take to do the consultation?

The NDSPG consultation will be in 3 parts to be carried out at different times;
1) a general and broad request for information where you can share all that is important to you
2) more specific questions based on the information we gather from stage 2 and finally
3) where we ask people to volunteer for focus groups to really explore common issues in greater depth.

The NDSPG consultation will be comprehensive and multi-faceted consultation where we hope to gather an abundance of evidence about living with Down syndrome in all areas of life. You can participate as much as you are able because all information will be processed.

4) How accessible will the consultation be?

We are hoping to capture the views of people with Down syndrome and we understand that there is a broad spectrum of assistance that will be needed in order for people to participate effectively. The NDSPG consultation is for use by all that has been designed to be as user-friendly as possible with videos and simplified language.

We would encourage parents, carers, support groups and professionals to be as creative as possible in sharing the consultation with people with Down syndrome who need assistance. We suggest, for example, using visual prompts, narrowing down open questions and providing specific choices as appropriate.  It is incumbent upon all of us to assist those who will need support and to help them have their voice heard. We kindly ask that parents, carers and professionals also complete the NDSPG consultation.

Responses can be recorded in any format such as printed/written, videos, recordings etc although for our convenience in collecting the data, the online form is preferred. In addition our founding officers with Down syndrome are able to offer assistance via online meetings to adults with Down syndrome who would appreciate this support. You can email for more details.

We are thankful to the LD nurses who volunteered at the Advisory Group to assist the adults with DS to submit their thoughts- your help was appreciated! However, please rest assured you don't need to be a specialist to support someone to take part - just begin a conversation and explore what they think about the areas in the consultation.

5) Will my contribution actually make a difference?

YES!!! We have been so impressed with the desire shown by the senior civil servants to effectively capture the voices of people in the Down syndrome community. They want to know about your life, the things that work well and the things that don’t. If we don’t tell them, then the assumption will be that everything is OK and we know from personal and wider experience that this is often not the case. The Guidance, which public authorities will require a very strong and good reason not to follow it, will be written using the evidence provided by our community and professionals. The National Down Syndrome Policy Group has created new opportunities for people with Down syndrome and their families to be heard at the highest level where laws are written and passed. Please do not let this opportunity pass you by but grasp it with both hands and have your say!

6) Can others also contribute to the consultation?

YES! The NDSPG consultation is open to all people which includes the wider family, teachers, social workers, healthcare professionals, volunteers, therapists….the list is endless. We would urge you to circulate the NDSPG consultation around all those who are/have been involved throughout your journey and those who may come into contact with people with Down syndrome in their personal or professional lives. We want a broad response that captures lots of different views from people of all different backgrounds.

Our Thanks to BECG

We are delighted that the leading award-winning communications consultancy firm, BECG, has offered operational support on a no cost basis to the National Down Syndrome Policy Group providing an online platform through which we can collect views and opinions on what the Down Syndrome Act will mean for people across the Down syndrome community.

 Unique Opportunity for a Post Graduate Researcher 

Are you passionate about data analysis and helping the people with Down syndrome to get their voices’ heard? The NDSPG would like to invite postgraduate students in psychology (and sociology) to support the NDSPG as Research Assistants working on the analysis of the qualitative data from phase 1 consultation results. Some experience with qualitative analysis (especially framework analysis) preferable. Please get in touch to learn more about this amazing opportunity:

Keep in touch

Join our mailing list for up-to-date news and progress about the Act.

Follow us:  
Twitter @NDSPolicyGroup
Instagram too @ndspolicygroup

You are most welcome to email us your questions, opinions and anything else at

Warmest wishes,
The National Down Syndrome Policy Group Team 


Group photo of the founding officers of NDSPG
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