For too long, too many people, have held an outdated view and understanding of what it means to have Down syndrome.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of expectant and new parents in the UK today, and a large proportion of parents report negative, discriminatory and outdated attitudes from many professionals who should be providing accurate, contemporary information and meaningful support (Enoch, 2019; 2021).
One parent supported by PADS was told as soon as she went into the ward that unfortunately her baby was suspected to have Down syndrome. She was then put in a side room away from other mums and their babies and given a leaflet to read alone, which was outdated and negative. She was left feeling scared, devastated and confused, without any helpful or positive information given at all.
As a charity heavily involved with the Down Syndrome Act 2022, PADS is very conscious of the requirement of all public bodies to ensure discriminatory attitudes and language towards those with Down syndrome are challenged and addressed.
PADS is a parent-led charity who believe their staff are experts by experience. The charity currently delivers ‘The Lived Experience’ training to health professionals and students to provide a contemporary understanding of living with Down syndrome, the importance of language, promoting best practice around sharing the news a baby has or may have Down syndrome and how best to support expectant and new parents. The training aims to empower professionals by providing them with the knowledge not only of what it means to have Down syndrome in modern Britain, but also of the services and resources available to future parents and their children.
PADS encourages professionals to consider the impact everyday medical language, including words such as ‘abnormal’, ‘disorder’ and ‘problem’ can have when referring to someone's baby. PADS advocates the use of the word ‘chance’ instead of ‘risk’ when sharing screening results, as ‘risk’ is a negative word that is associated with exposure to injury or loss, danger and peril and therefore should never refer to someone with a different chromosomal arrangement.
The charity's training directly addresses issues identified in extensive research. Generally, when the news is given that an unborn or newly delivered baby has Down syndrome, it is shared with over-medicalised terminology, throwaway well-meaning but discriminatory stereotypical statements and sadly much negative language (PADS, 2022a). For expectant women, PADS staff understand the influence such language and attitudes can have around any decisions about continuing a pregnancy.
An important element of the training addresses how best to share the news that a baby has or may have Down syndrome, drawing on recent experiences from parents, both good and those that could be improved. The training has been well received by all members of the maternity team, who advise that they would recommend the course to colleagues based on feedback on the PADS Facebook group.
As well as delivering training, the charity provides ongoing support to expectant and new parents, connecting them with other parents in the same situation who experience similar concerns and worries. The PADS (2022b) ‘Heart Buddies’ scheme provide invaluable emotional and practical support to families whose little one requires heart surgery and PADS funds independent counselling for those parents who are struggling. Signposting parents to PADS can ensure their emotional and mental health are well supported, with parents being well cared for and nurtured by peers and professionals, many of whom are also themselves parents of a child with Down syndrome.
Another parent supported by PADS told the charity that before she joined, she was scared and worried, and felt very alone. As she met other expectant mums and spoke with those who had a child with Down syndrome, she was able to relax, know that she was not alone and had somewhere to go for information and support.
The Lived Experience training is delivering the all-important parental perspectives and sharing best practice from extensive experience and research. Ultimately, the charity strives to give medical students and professionals the confidence and knowledge to understand how best to support expectant and new parents.
At PADS, we passionately believe that every woman with a high chance or confirmed result of a baby having Down syndrome has the right to enjoy a pregnancy that is free from discrimination and not be subjected to prejudicial language or out of date attitudes. The Lived Experience Training can enable this.