The Down Syndrome Act aims to ensure sufficient provisions and support are provided to those living with Down’s syndrome. However, we fear that people living with Prader-Willi syndrome will be disadvantaged when trying to access the same support, based purely on the name of their condition.
PWSA UK, together with a coalition of other genetic disability groups
called for amendments to be made to the Bill as it was going through the House of Commons and House of Lords, so that it could include those with other genetic conditions that have significant overlapping needs, such as Prader-Willi syndrome. It was therefore hugely disappointing when the Bill passed and became an Act without amendments.
We believe that to treat people with the same needs differently, just because of the name of their condition, is discriminatory.
This Act is now law, and the Department for Health and Social Care (DHSC) is drafting guidance which will set out to all professional bodies, including the NHS, local authorities, on how the care needs of those with Down’s syndrome must be met.
There is no additional funding to support this Act and with resources already hugely overstretched, there is a real danger of those with Down’s syndrome being prioritised over those with PWS, regardless of their need.
Thankfully the DHSC has listened (a bit) and agreed to consider whether the guidance could also have benefits for people with other genetic conditions but similar needs, and whether the guidance should be widened beyond just those with Down’s syndrome. In order to do this, the DHSC has launched what is known as a Call for Evidence, asking people for their views.
If enough of our community respond to the Call for Evidence, those with PWS could be included within this Act. It’s time to let those making these decisions know about the realities of PWS and the struggles that your sons and daughters, and your whole families, face every day.
Click
here to answer the Call for Evidence survey. ***IMPORTANT: We have been advised by the Department of Health and Social Care that those taking part in the survey 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.***
This is your chance to be heard. If you have friends or family who also support your sons and daughters, send them the link too and ask them to complete the survey. The more people who answer this, the better chance we have of being included!
The survey closes at 11.45pm on 8th November 2022.
