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Supporting people with Down syndrome to have a say in the formation of policy
New and existing policies and practice should consider people with Down syndrome and their families
The group comprises people from a wide range of other charities and support groups: all with the common aim of ensuring that the voice of people with Down syndrome is heard in society and reflected in government policy.
Below are the groups who are supporting us and some of their members are represented within the NDSPG but we would love to hear from others.
NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives
The group comprises people from a wide range of other charities and support groups: all with the common aim of ensuring that the voice of people with Down syndrome is heard in society and reflected in government policy.
Below are the groups currently represented but we would love to hear from others.
What we do
Ensure that policy and practice considers people with Down syndrome and their families
Promote
Promote positive attitudes towards those with Down syndrome in all areas including maternity, healthcare, social care, education and employment, as well as the media and wider society.
Engage
Engage with the Government with a view to encouraging policy changes to benefit people with Down syndrome and to improve support in health, education, employment, housing and within the wider community.
Act
Act as Secreteriat to the All Party Parliamentary Group for Down Syndrome (APPG-DS) and provide administrative, financial and research support to the undertaking of that group.
Seek funding
Seek funding for research to improve morbidity and mortality across the lifespan of people with Down syndrome.
Work together
Work with government and health practitioners to achieve a pathway to support expectant women where baby has a confirmed diagnosis or high chance of being born with Down syndrome.
Raise profiles of issues
Nationally raise the profile of issues affecting people with Down syndrome, their families and carers.
Latest consultation
Get involved in the consultation on the guidance
The Government has started its consultation on the statutory guidance required under the Down Syndrome Act 2022. The consultation has been extended and will now close on March 3oth 2026.
The guidance is not straightforward but it is essential that we use this opportunity to feedback to Government in areas where we feel the guidance is lacking. We will be creating a set of resources to help you in this process, but the main way of providing your input to the process is by responding to the questions in the consultation.
The Government has produced an EasyRead version of the Guidance but it is a big document. For ease of use, we have split the Government’s EasyRead into sections that you might find easier to use.
We have compared the feedback you gave us at the initial consultation with what has been included in the guidance, we believe there are many gaps. Our gap analysis breaks down the sections of the guidance consultation and suggests areas for improvement.
Although progress has been made through the guidance, there is still a lot of work to do to make it the document our people deserve. We have drafted a letter we would like you to share with your MP. We have a system that will generate your letter to your MP just a through a few clicks. Please use the button opposite to write to your MP.
Testimonials
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FUNDRAISING
Provide financial support to the NDSPG
Although we are group of volunteers, we do require funding in order to:
- pay for research
- buy in consulting expertise
- support the administration of the group and the APPG
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We answer all email and requests as they come in. If you have an urgent matter or would like to place an order please click the link below to give us a call.
We answer all email and requests as they come in.