THIS past month I was honoured to be elected chair of the Down’s Syndrome All Party Parliamentary Group.
Alongside other members of the group, I have pledged to work with the Down’s Syndrome Association to raise awareness of the condition not only in Parliament but across the UK.
I replace Aberavon MP Hywel Francis as chairperson since he is due to retire at next year’s General Election.
Hywel is the person who I credit with making me aware of the issues around the condition. It was thanks to him that I met Kate Powell, a young journalist who wrote my column in the Argus as part Down’s Syndrome Awareness Week last year.
A vital part of the role of chairperson is to raise awareness of Down’s Syndrome so that health professionals, career advisers and teachers can best support those who have the condition. One part of this is regular health checks which is why the Down’s Syndrome Association recently launched its Health Book, which is a kind of health passport.
People with Down’s Syndrome are pre-disposed to certain medical conditions, such as cardiac disease, thyroid disorders and Alzheimer’s disease, and yet are less likely to access regular health checks and routine screening.
Annual health checks are an excellent way of monitoring health and the Down’s Syndrome Association has worked with people with Down’s Syndrome, medical experts and GPs to produce a tool which will keep the annual health checks focussed on better health outcomes for adults with Down’s syndrome.
Individual health profiles and particular health concerns that are recognised in Down’s syndrome are merged into an easy-read document called the Health Book.
Since becoming chairman I have met with the Welsh Health Minister, Mark Drakeford AM, in the hope that this book will be given to everyone who lives with Down’s Syndrome across Wales.
People with Down’s Syndrome are encouraged to take this book to their health checks, where the GP will go through each section to ensure all potential health concerns are considered. GPs have direct access to a particular page on the Down’s Syndrome Association website which hosts specific information about the relevance of particular conditions in Down’s Syndrome.
Following the health check, we would like to see the GP, the person with Down’s Syndrome and their carer agree an action health plan with clear provision for treating identified health issues. This is an innovative idea which I hope to see launched all over Wales. To find out more please visit downs-syndrome.org.uk