47,000 families are blighted by the stalling of the Down Syndrome Act.   They know that people with Downs have distinct needs from the wider learning disability community.   We call on Government to ensure that the Guidance to the Act is specific to those with Down syndrome.

Nowhere is this clearer than in older age, where the genetic risk of early onset Alzheimer’s disease is 6 times greater than those with a learning disability and, according to the UK’s top researchers, 96 times greater than the wider population.  Despite this knowledge, there are almost no specialist care facilities open in the UK to provide the specific care needed in the short period before this pernicious disease reaches its inevitable conclusion, a full 22 years earlier than in the normal population.  My sister developed Alzheimers at 52 and now has epilepsy.  It's been a brutal journey for all of us.

The Government’s consultation papers issued in December 2025, were a huge blow to tackling these problems. The whole tenor sought to undermine the wording of the original Act, and a prescriptive format denied opportunity to raise pertinent objections.

47,000 like-minded families in a single constituency would guarantee an MP with a mandate to hold the authorities to account, but, spread across the country, the only way of getting our voices heard is to join together in a petition.  I hope you will join me in asking parliament to take note, and to stop the prevarication.