Down Syndrome Act: just over three weeks left to have your say!

Thank you to everyone who has responded to the Down Syndrome Act Call for Evidence and for those of you who haven’t yet there are only just over three weeks left for you 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.

If we want the needs of those with Prader-Willi syndrome to be included into the guidance for the Down Syndrome Act, we need as many people as possible to respond to this Call for Evidence.

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 syndrome should select the option ‘carer or 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 mention Prader-Willi syndrome each time.***

2. Alternatively, 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 PWSAUK submission, just email your thoughts to Susan Passmore at spassmore@pwsa.co.uk.

This Call for Evidence closes on 8^th November so please act now!