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Parents of children with learning disability to reveal NHS experiences

A mother will reveal how she has turned negativity surrounding the way she was told about her son’s Down’s syndrome into a national policy at a special event in Nottingham later this month.

Angie Emrys-Jones says she would not change anything about her “adorable” Ted, who is now 12, but she would change the way confirmation of his diagnosis was coldly delivered by a consultant.

The 42-year-old says healthcare professionals who provide such news to people need to treat the moment as a “privilege”, with these experiences having a lasting impact.

Angie will be one of the speakers at a special event called ‘Turning up the volume on the families’ stories’, which will take place on Friday, March 29, at the Institute of Mental Health, located at the University of Nottingham’s Jubilee Campus.

The one-day conference is about ensuring these parents are given a voice and is part of work being carried out by National Institute of Health Research (NIHR)Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East Midlands to improve the care and experience of parents and children with learning disabilities.

Angie, who is from Truro in Cornwall, said she had two contrasting experiences regarding the diagnosis of her son. 

She said: “The midwives suspected Ted had Down’s Syndrome in the delivery room and they were very honest and kind, they were very good. But then a few days later when the consultant confirmed the news, he was very cold, he was actually walking rather than standing or sitting down and looking directly in my eye.

“Delivering different news is a privilege, how the news is delivered will stay with them forever. A negative first encounter can affect the way people interact with services forever.”

Now the director of the charity Cornwall Accessible Activity Programme, Angie has created a positive from the bad experience. She trains healthcare professionals in how to deliver ‘different news’ and is also part of a Public Health England project, which is rolling out a template and tools to help professionals in the absence of any standardised guidance.

Other parents and family members will also be speaking, along with international speakers, academics and policy influencers, at the free event aimed at for family caregivers, professional carers or influencers across health and social care. There will also be interactive workshops throughout the day. 

People wanting to attend, can book a place by emailing The event will run from 10am to 3.30pm, with registration from 9.30am.

Nicola Wright, Assistant Professor in Mental Health, Faculty of Medicine & Health Sciences, who has organised the event, said: “People’s real-life experience of being the parent of a child with a learning disability can be extremely powerful in influencing positive change. We are staging this event because we want to turn up the volume on the narrative of families who have a child with a learning disability. People should never feel that they have been heard but not listened to.” 

Published on: 21 Mar 2019