Throughout my time so far as a Member of Parliament, I have been fortunate to meet people from across our community, hear their concerns and follow their campaigns. Last week, it was a privilege to meet the young people representing ‘Positive about Down syndrome’ in Parliament - a charity which provides information and support to new and expectant parents of a child with Down syndrome.
Affecting around 47,000 Britons, Down syndrome is a genetic condition caused by irregularities in some individuals’ DNA makeup, which are present at birth. This means that, although most people will have 46 chromosomes, a person with Down syndrome will have an extra copy of chromosome 21. While many of those with Down syndrome face challenges across all stages of life and may need regular care and support as a result, others are able to work and live independently.
A fantastic local initiative which provides opportunities for those with Down syndrome is the ‘Birch Tree Cafe’, which opened earlier this year in Easton-on-the-Hill just over the constituency border near Stamford. The Cafe is partly staffed by young adults with Down Syndrome creating a space for work, socialising, and community interaction. While this initiative was launched by the Peterborough Area Down’s Syndrome Group, I am engaging with our own Lincolnshire Downs Syndrome Support Group – which itself runs several social, activity and information sessions – to learn more about their work in our community.
On a national level, ‘Positive about Down syndrome’ are leading a campaign to highlight young people and adults with Down syndrome who are living an active and fulfilled life, 99% of whom are happy with the way that they live their lives. Their campaign focuses upon ensuring access to balanced and comprehensive information for prospective parents who take the option to participate in the NHS screening programme for genetic conditions.
I wholeheartedly support the principle that through clear and neutral conversations, and with informed support from medical professionals, we can make sure that prospective parents receive the right information and guidance throughout the screening process. I also understand that the Government does some great work with Down syndrome charities to provide information and support parents and healthcare professionals.
This work complements the campaign for greater awareness of Down syndrome led by my friend Dr Liam Fox MP, which I was pleased to be a part of. Supported by the Government, this campaign aimed to de-stigmatise Down syndrome, improve health, educational and local support services, and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents. I am delighted that these aims were achieved through the Down Syndrome Act - a truly landmark piece of legislation passed this year.
I look forward to continuing to support the work of charities such as ‘Positive about Down syndrome’ and of our local support group to build on the success we have had so far in making this country a better place for those with Down syndrome.
