Down Syndrome Act: just over 24 hours left to respond!

For those of you who have not responded to the Down Syndrome Act Call for Evidence, this is your last 24 hours to be heard!

Our concern is that an Act with the aim to improve access to services and improve the quality of life for those with Down’s syndrome could introduce a hierarchy of diagnosis and that services - such as they are - could be provided according to diagnosis, not need.

This Call for Evidence is your chance to have the needs of those with PWS and other genetic disorders included into the guidance for the Down Syndrome Act. If you don't want those with PWS to miss out, then you need to respond to this Call for Evidence before Tuesday 8th November at 11.45pm!

Parents, carers, relatives and anyone who works with someone with PWS can all have their say by:

1. Clicking here to answer the Call for Evidence survey. ***IMPORTANT: We have been advised by the Department of Health and Social Care that carers or parents of other syndromes should select the option 'carer of family member of someone with Down's syndrome' and then answer the questions as though you are talking about PWS - and where there are sections for you to write comments, please put Prader-Willi syndrome each time***
2. If you are struggling to answer the survey, or feel that it is too long, or you cannot convey what you want to through the survey, you can send a written statement, no more than 10 pages long, to dsactguidance@dhsc.gov.uk.

Would like to help us continue campaigning for the right of those with PWS? Then why not become a member? Click here to find the details and scroll to the bottom of the page to join.

The Call for Evidence closes TOMORROW, 8th November 2022 at 11.45pm, so please, use this last chance to have your voice heard and act now!