Liam Fox: MP's law on Down's syndrome care needs moves step closer

Science Photo Library Boy with Down's syndromeScience Photo Library

Coming up this Friday is the first move toward a major change in the law, to benefit some of the 47,000 people in the UK with Down's syndrome.

The change, proposed by Conservative MP Dr Liam Fox, has won support from every political party represented in the Commons.

The backstory is important: when the future MP was a boy, his family lived next door to a boy with Down's syndrome; at the time, the life expectancy for a Down's syndrome child was 13 years.

By the time he qualified as a doctor, it was 30 years - today it is 58, and people with Down's syndrome are living into their seventies.

In short, this is the first generation of Down's syndrome children who will outlive their parents. Without action, Dr Fox says, predictable and avoidable human tragedies will follow.

As a GP, then an MP, he regularly encountered families with Down's syndrome children, and was struck by the struggle they had to get complex care needs dealt with - often being passed from one agency to another.

Which is why, having won guaranteed debating time for a private members' bill (a law proposed by a backbench MP rather than the government), he decided to bring in the Down Syndrome Bill.

The basic idea behind it is to ensure that the care needs from the NHS, social care and education services are met throughout their lives, and that those services are under a duty to assess and plan to meet the needs of people with Down's syndrome.

The bill, which is up for debate on Friday morning, applies to England - and while private members' bills are normally vulnerable creatures, easily derailed, this one looks to have a better than average chance, because the Health Secretary Sajid Javid has already signalled his support, massively increasing its chance of becoming law.

Open door

Much of this is down to Dr Fox, a Conservative former cabinet minister who was also once the Tory whip who dealt with private members' bills, who persuaded ministers and enlisted cross party support.

But he admits he was pushing at an open door - almost all MPs have found themselves asked to help the families of Down's syndrome children and run into the sheer complexity of their needs, so there was a great deal of sympathy for a bill that laid down their rights to care.

So the expectation now is that the bill will be passed into law without significant changes.

There have been a number of efforts to guarantee rights to care and treatment to different groups.

The bill follows the success of Labour MP Carolyn Harris's Menopause Bill, where she extracted assurances from the government about menopause services and therefore didn't have to push for it to become law.

And coming up next week, another Labour MP, Chris Bryant, has a bill on acquired brain injury, which is also about ensuring care needs are met.