Down Syndrome Act: last few days to respond!

Thank you so much to the many of you who have already responded to the Down Syndrome Act Call for Evidence, and for those of you who haven't yet, this is your last chance to have your say!

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 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 feel that the survey is too long, or you cannot say what you want to convey through the survey, you can send a written statement, no more than 10 pages long, to dsactguidance@dhsc.gov.uk.

We know that everyone is busy, so if you prefer to have your comments included into the PWSA UK submission, just email your thoughts to Susan Passmore at spassmore@pwsa.co.uk by Monday 7th November 2022 at 9am.

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 on 8th November 2022 at 11.45pm, so please, use this last chance and act now!