Down syndrome training
Nicola Enoch and Lucienne Cooper from the charity Positive About Down Syndrome discuss the importance of the parent's perspective in Down syndrome training
For too long, too many people, have held an outdated view and understanding of what it means to have Down syndrome. For many, the image of a young adult with a bad haircut wearing unfashionable clothes, walking along holding hands of an elderly parent, may come to mind. Sadly, for health professionals, a list of potential medical conditions and physical attributes often define their view of what it means to have Down syndrome (Positive About Down Syndrome (PADS), 2020). However, for most children and young people with Down syndrome in the UK, life in the 21st century is good: going to school, getting qualifications, independent or semi-independent living, having a partner, getting married and even having a fashionable haircut! Life expectancy has increased from mid-teens in the 1960s to 60 years and beyond (The Down Syndrome Medical Interest Group, 2020).
Despite improved outcomes, there is still ignorance and negative stigma associated with the condition, particularly in maternity care. The charity PADS has been working to address this and, in 2019, published the findings of the maternity experience of 1410 parents (Enoch, 2019). PADS currently supports over 120 expectant women with a high chance or confirmed result of a baby having Down syndrome, and more than 2000 parents of a child with Down syndrome of preschool age, based on the members of the PADS Facebook group. The charity is therefore immersed in the experiences of expectant and new parents in the UK today, and a large proportion of parents report negative, discriminatory and outdated attitudes from many professionals who should be providing accurate, contemporary information and meaningful support (Enoch, 2019; 2021).
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