Dr Liam Fox column - World Down Syndrome Day

It was a crucial opportunity to raise awareness of Down syndrome across the world; to come together and share experience and expertise.

This year’s theme, “With us, not for us,” touches on legal capacity and supported decision making and is incredibly important.

We all expect to be able to make decisions about our lives, from where we live and who we live with, to what we study and where we work.

The same should be true for people with Down syndrome. We must all take action to make sure this happens in practice. It can make all the difference when we get it right.

Dr Liam Fox MP at the United Nations. (Image: Office of Dr Liam Fox MP)

When a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population. They will face challenges in the form of medical problems, educational needs and long-term care challenges.

I believe that every individual with Down syndrome has the same right to life, quality of life, dignity and independence that the rest of us take for granted.

The UK has a longstanding tradition of ensuring the rights and liberties of disabled people are protected.

In 2021, I introduced to Parliament a Down Syndrome Bill, which I am delighted to say became law in April 2022.

The Down Syndrome Act is a world first and I am very proud of this achievement for our country. My interest in this is personal, political and professional – as a Member of Parliament, as a doctor and as someone who grew up next door to a boy with Down syndrome.

I have seen clearly that there is so much more to do to support people with Down syndrome to have that independence of decision making. Much of the impetus for change has been driven by the huge improvement in life expectancy.

People with Down syndrome are now living into their 70s. That makes a huge difference, because they are the first generation who will outlive their parents.

The Act legislates for people with Down syndrome. It requires the Government in England to produce Down syndrome specific guidance relating to health, social care, education and housing services. 

Public authorities (such as hospitals, schools, or social care providers) cannot ignore this guidance when commissioning and delivering services.

We will share best practice examples to ensure professionals understand how to support people with Down syndrome to make decisions about the things that are most important to them. 

In the spirit of “With us not for us,” we will work closely with people with Down syndrome, families and carers, as well as organisations who support them to develop the guidance and make sure it is fit for purpose.

Let us hope that what we said at the UN is just the start.

The Rt Hon Dr Liam Fox MP.

Member of Parliament for North Somerset.