Down's Syndrome bill: Families 'ghosted by the system' call for more support

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Families of people with Down's Syndrome have backed a proposed new law to improve services for people with the condition - which could become the first legislation of its type in the world. 

The Down Syndrome Bill is being debated in Parliament on Friday and has some high-profile supporters including former doctor and Conservative MP Liam Fox, who wants to introduce a National Strategy for Down's Syndrome across education, health and social services.

Dr Fox said: ''We now have a generation of people with Down's Syndrome, and their life expectancy is such that it's the first generation that will outlive their parents.

"There's a perfectly predictable set of personal tragedies that will unfold unless we act now, especially when it comes to social care."

The new bill will recognise people with Down's Syndrome as as specific minority group. This means the NHS, and local authorities will have to make provisions to meet their needs - and take them into account when planning services.

Dr Liam Fox has been an MP for 30 years Credit: ITV News
Betsy, from Takeley in Essex, is one of 42,000 people with Down's Syndrome in the UK Credit: ITV News

Kelly Marshall, whose daughter Betsy has Down's Syndrome, said she felt they had been "ghosted" by the current system, which offers little support for families like hers. She believes that change is long overdue.

Ms Marshall, of Takeley in Essex, said: "Our community paediatrician we've only seen when she was eight months old and that was via video, and it feels like we've kind of been ghosted.

"If we hadn't have had the support of Upwards with Downs and our local charities would be struggling to gain access to those services."

Campaigners like Tommy Jessop agree. He made his name as the first actor with Down's Syndrome to star in a prime-time BBC drama when he was cast in Line of Duty.

Actor Tommy Jessop was cast in the BBC's Line of Duty Credit: ITV News

Mr Jessop said: ''We are not all the same. We have different talents and personalities just like other groups of people.

"Hopefully this bill will make all the difference.''

The Down Syndrome Bill is still in its early stages, but Tommy, and so many others are keen to follow its progress.

If it is approved, it could make history as the first law of its type in the world.