Down Syndrome Awareness Month

Bob Stewart Excerpts

Thursday 22nd October 2020 Commons Chamber

[Dr Cameron]

I thank the hon. Gentleman for raising that extremely important point. I do share his concern. I understand that, in England, the number of babies born with Down’s syndrome is down by about 30%. I was alerted today to an article in one of our Scottish papers, the Daily Record, about Stacey Corrigan, whose six-year-old son, Daniel Murray, has Down’s syndrome. She said:

“When many think of Downs Syndrome it’s most often with a negative outdated view”.

She also said that the language used by medical staff when speaking to parents-to-be is really important and should not be negative, and that parents should be given “balanced information and support”.

As I was saying, I want to build on the positivity and speak about people’s talents, passions, hopes and dreams. Their accounts are not uniform and follow no common narrative, but that is exactly the point. The richness and diversity of the Down’s syndrome community across the UK reflects the richness and diversity of society at large. However, all too often their lives and contributions have historically been medicalised or pigeon-holed into discussions about difference and limitations rather than talent, skills, ability and contribution. A more comprehensive and accurate narrative needs to be provided.

One baby in every 1,000 in the UK is born with Down’s syndrome, and there are approximately 40,000 people who have Down’s syndrome living in the UK today. Down’s syndrome was first described by an English physician, John Langdon Down, in 1862, and that then became the universally accepted descriptive term. It is a genetic condition occurring as a result of an extra chromosome—chromosome 21. People with Down’s syndrome can experience cognitive delays, but the effect is usually mild to moderate and is certainly not indicative of the many strengths and talents that each individual possesses.

People with Down’s syndrome have an increased risk of certain medical conditions such as congenital heart defects and respiratory and hearing problems, to name a few, but many of those conditions are treatable. Nowadays, most people with Down’s syndrome lead healthy lives.

[Bob Stewart (Beckenham) (Con)]

I thank my friend, the hon. Lady, for giving way. My family had a child with Down’s syndrome when I was young, and unfortunately he died very young. Does she agree that modern medicine has extended the lives of people with Down’s syndrome so much that they live as long as anyone else—perhaps as long as me?

[Dr Cameron]

I thank the hon. Gentleman for all his excellent work in the House of Commons in so many ways, on this issue as well as on the armed forces. I totally agree with his point; in fact, I understand that life expectancy has increased dramatically in recent decades, from 25 years in the ’80s to 60 today. Medical science has advanced and people can live extremely healthy and long lives and be great contributors to our society.

Every person with Down’s syndrome is, of course, a unique individual. People with Down’s syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote—which we should all remember to do—and contribute to society in many wonderful ways.

--- Later in debate ---

[The Minister for Care (Helen Whately)]

I would like to thank the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) for securing this debate on this important topic, and also for her work as chair of the all-party parliamentary disability group. Thanks to her, we are marking Down Syndrome Awareness Month here in the House with this debate today, and I am truly pleased that we have this opportunity to celebrate the brilliant contribution that people with Down’s syndrome make to our society, and also all the work of the many people and organisations who support those with Down’s syndrome to live their lives to the full.

Today, the hon. Member has outlined some fantastic stories about the achievements of people with Down’s syndrome, and also their hopes and dreams. I would like to share Michael’s story with the House. Michael has Down’s syndrome, a visual impairment and the muscle condition hypotonia. Despite his family being warned by doctors that he would probably need a wheelchair for the whole of his life, Michael has represented Wales and Great Britain in the Special Olympics and he has won more than 60 medals, which is an incredible achievement. He has not let the pandemic stop his plans. Earlier this month, he ran his first marathon in support of Mencap. He ran through rain, wind and mud to complete the virtual route around his local area in Wales. I want to take this opportunity to extend my congratulations to Michael on such an outstanding achievement.

While Michael’s achievements stand out as an inspiration to us all, I also want to celebrate the everyday achievements and contributions that people with Down’s syndrome make to their families and our communities, and the contribution they make to employment through participation and through love, friendship and laughter, enriching all our lives. That said, people with Down’s syndrome still face too many challenges and barriers. I want to see a society that works for everyone, where everyone can participate fully, feel included and be free to be themselves, so I want to talk briefly about some of the work we are doing to ensure that disabled people, including those with Down’s syndrome, are enabled to live full and rewarding lives.

First, in education, our ambition is for every child, no matter what challenges they face, to have access to a world-class education that sets them up for life, and that absolutely includes children and young people with Down’s syndrome. Supporting children, young people and adults with special educational needs is a particular need for us at this time, and our aim, even during the pandemic, is that education, health and care continue as far as possible, so that children and young people with SEND get the provision and support they need to fulfil their potential and achieve their ambitions.

The hon. Member spoke about work and employment in her excellent speech. We want everybody to have the opportunity to participate in meaningful and rewarding work and to gain the life skills and rewards that come from doing that. I am sure she knows from her work on the APPG that the Government have several programmes in place to support disabled people. An example is the Access to Work grant, which enables employers to buy personalised and tailored support to help disabled people to move into and retain employment. I should also say that, during the pandemic, Access to Work has particularly strengthened its support by making greater use of assistive technology and supporting the transport of assistive technology from workplaces to homes to enable more disabled people to work from home.

There is also the intensive personalised employment support programme, which helps disabled people with complex needs who want to work but require specialist support to do so, and the Disability Confident scheme, which supports employers to have the confidence to recruit and retain disabled people. However, I will take away the hon. Member’s question about what specific support is available through the kickstart scheme for people with disabilities, and also her point about particular schemes for those with disabilities to start their own businesses.

I also want to talk about health inequalities. We had a brief exchange about the improved life expectancy for people with disabilities, particularly those with Down’s syndrome, but despite the increase in life expectancy, there are still health inequalities facing those with Down’s syndrome and also those with learning disabilities. For instance, they are more likely to experience premature mortality. The recent Learning Disability Mortality Review report stated that the life expectancy gap for those with learning disabilities is 22 years for men and 27 years for women. That is absolutely not right.

[Bob Stewart]

When I was born in 1949, the life expectancy of someone with Down’s syndrome was 12 years. The life expectancy now, we hope, is somewhere in the 60s or 70s. I am sure the Minister will agree that we have to find a way to employ these people properly, and not just because, as some people would say, they are disabled; in my view, they are not.

[Helen Whately]

I completely agree with my hon. Friend. I do know that those with Down’s syndrome are in employment, but let us continue to support that as one of the rewarding things for everybody to experience in life. As he said, life expectancy has indeed improved enormously, but I am ambitious and determined that we go further and make sure that we reduce health inequalities for people with disabilities.