Letter to Dr Liam Fox: Down Syndrome Bill

Note: this article was updated on 2nd February 2022. The update can be found at the end of the article.

The Down Syndrome Bill recently received its second reading in the House of Commons. This is a Private Members' Bill introduced by Conservative MP Dr Liam Fox which aims to ensure that certain health, education, and local authorities take account of the specific needs of people with Down’s syndrome when exercising their relevant functions.

In some ways this could be seen as a good thing, and the accounts of poor provision and inadequate EHCPs are very familiar to us all, but we believe that ensuring provision by diagnosis rather than by needs can be divisive and is potentially discriminatory, as it could see people with very similar needs treated different simply because of the name of their condition.

Many of the needs of those with PWS overlap with the needs of those with Down’s syndrome, so PWSA UK has joined with a number of other charities and written to Liam Fox. We are asking him to meet with us to discuss broadening the scope of the Bill to include ALL that face the same challenges as those living with Down’s syndrome.

Our letter to Liam Fox can be read here and we will keep you all updated on his response.



Update:

Unfortunately, we are still awaiting replies from Dr Liam Fox’s office and from all the other MPs copied into the letter. The third reading of this Private Member’s Bill is due to take place on Friday (4th February). However, we are NOT giving up and are approaching Health Secretary Sajid Javid for a meeting, as well as looking for support for when the Bill reaches the House of Lords. We will, of course, keep you all updated on progress.