I am mum to two teenage boys, my youngest son has Down syndrome. In addition to being the Training Manager for DSUK, I am the founder of the local support group Get on Down’s and part of the National Down Syndrome Policy Group.

When I had Billy, I was given a scary booklet which mentioned life expectancy, an increased risk of dementia and leukaemia, I was terrified. Many new and expectant parents get negative information about Down syndrome from various health professionals resulting in poor mental health including fear and isolation.

Parental mental health can be vastly improved if all staff in maternity and children’s health have a contemporary knowledge of Down syndrome in the 21st Century.

I have been delivering our Lived Experience training sessions to universities and hospitals throughout the UK since 2021 which has received great feedback, many attendees have adjusted their practice and would recommend the training to colleagues.

Receiving news that your baby has Down syndrome should not be a negative experience; there is lots to be positive about.