Campaigners were thankful in November for the amended advice on Down’s syndrome on NHS Digital, as it takes a more positive approach to the condition.
The guide states: ‘People with Down’s syndrome will have some level of learning disability. This means they’ll have a range of abilities. But, like everyone, people with Down’s syndrome have their own personalities, things they like and dislike and things that make them who they are.’ A large yellow box states ‘Important. It’s your choice whether or not to have any screening tests’.
However, Positive About Down Syndrome’ (PADS), a new report shared with MPs in October, highlighted the ongoing discrimination towards expectant parents of a baby with Down’s syndrome. The report called on MPs to ensure there is access to support groups available at hospital screenings.
Dr Elizabeth Corcoran of Down’s Syndrome Research Foundation UK said: ‘Research into the health issues affecting people with Down’s syndrome has been hampered and blocked by the ingrained belief that the only way to help the Down’s syndrome community is to reduce their numbers. Millions [of pounds] in funding has been poured into running and refining the screening [process] whilst only £5.33 per person per year is spent on research that could improve the lives of people with Down’s syndrome.’
Testimonies
Emma Mellor, mum to Jaimie (5): ‘I think we must have been offered about 15 terminations, even though we made it really clear that wasn’t an option for us. At 38 weeks they made it really, really, really clear, that if I changed my mind on the morning of the induction to let them know, because it wasn’t too late; until the baby had started travelling down the birth canal, I could still terminate.’
Nicola Sparrow mum to Lily (3): ‘The first thing that she (consultant) said to me was, if you come in and see us this week, we’ll arrange a termination for you. She told us all the negative things about having a child with Down’s syndrome and said, you’re only 28, you’re both so young, you should terminate and start again. I was incredibly shocked that I was being asked this at 37 weeks pregnant, after just being told that I was being induced the following morning. I was being told I still had options as to whether I was going to have my baby or not and then also that if she was born not breathing or struggling to breathe, they were willing to not help my baby.’
