Meeting of the Parliament 18 March 2014
I add my voice to those who have congratulated John Wilson on lodging the motion, particularly as the debate is taking place at the start of UN world Down’s syndrome awareness week.
I would be surprised if a single member in the chamber or anyone in the public gallery—or indeed in communities throughout Scotland—was unfamiliar with the condition known as Down’s syndrome.
Despite being something that has always existed, and despite research by John Langdon Down in the mid-19th century, until relatively recently people with Down’s syndrome were severely stigmatised. Indeed, they were often institutionalised and, in the extreme case of Nazi Germany, they were the victims of genocide.
Thankfully, times have moved on. I commend the fact that Down’s Syndrome Scotland recently celebrated its 30th birthday. I congratulate the charity on the enormous support that it has provided across Scotland for people with Down’s syndrome, their families and the professionals in the field.
Branches of Down’s Syndrome Scotland stretch from Grampian to Tayside and Fife, from Edinburgh to central Scotland and across to the west and Ayrshire. Each local group is active in assisting individuals and families in their communities.
I was interested to read about the communication skills project, which is highlighted in the motion, which is assessed by the University of Strathclyde and is looking at ways to improve speech and language abilities in children as early as possible. As with so many areas in medicine and support services, early intervention is often the key to providing successful help for people with Down’s syndrome to realise their potential. That is essential in the early years, when children need such support to improve their communication skills, which in turn will help them to learn at a faster rate.
Another area that requires greater emphasis—and one in which Down’s Syndrome Scotland is leading the way—is continuing professional development for professionals, such as teachers, health visitors and midwives. As the old adage says, one is never too old to learn new skills. By providing those tools through accredited courses, a greater understanding of Down’s syndrome can be gained.
The time available to me this evening does not allow me to cover every aspect of the tremendous work that is undertaken by Down’s Syndrome Scotland, but I would like to mention the subject of screening. Advances in this field have ensured that women and their partners have access to the appropriate information in terms of explaining the difference between screening and diagnosis and discussing the options available. Pre-diagnostic support for pregnant women to make them aware of the possibility of having a baby with Down’s syndrome should be more widely available.
Similarly, there has to be postnatal care in hospital for parents of babies born with Down’s syndrome. Such things as Down’s Syndrome Scotland’s baby packs in maternity units should be part of the overall level of support that is provided for parents who are made aware of their child’s condition.
Thankfully, the number of terminations following a prenatal diagnosis of Down’s syndrome has fallen in England and Wales. I do not have the figures, but I imagine that the trend would be the same in Scotland.
I want finally to touch on the involvement of people with Down’s syndrome in culture and the media. I very much welcome the fact that actors with Down’s syndrome—who are often very talented—now play roles in mainstream television programmes such as “Eastenders”, “Holby City” and “Upstairs Downstairs” and in films such as “Notes on a Scandal”. However, it has taken far too long to achieve such involvement. Culture should represent society and, given that people with Down’s syndrome are obviously part of society, they should be playing a part in our media. Perhaps that is a key component of ending the stigma of Down’s syndrome.
As a member for North East Scotland, I hope that Down’s Syndrome Scotland’s charity dinner—called Scotland with soul—in Aberdeen this Friday, which will include music, dancing, an auction and a raffle, is a great success.
I thank John Wilson again for bringing this issue to the chamber and I wish all those involved in Down’s syndrome awareness week every success in raising awareness of this common condition and helping those affected achieve their full potential as equal and active members of Scottish society.
17:25