Amelie Chan, aged 9, has Charge syndrome, a recognisable pattern of birth defects that occurs in about 1 in every 10,000 births. Amelie is deaf and cannot communicate with many of the healthcare professionals who support her during her regular trips to hospital.
Lesley, her mother, thinks its important that NHS staff learn sign language and some of the nurses have pledged to learn new signs every week as part of NHS Change Day, which was in March.
As her daughter grows up with the condition, Lesley says it is becoming more important that Amelie is a full participant in her own care, especially as much of it is invasive. Despite being visually impaired and spending a third of her life in hospital facing multiple operations, Amelia has learned to communicate with basic sign language – but that doesn’t seem to help in hospital.
“We’ve been going to hospital as an in-patient for nine years now and a lot of the time Amelia is just sat bored in her room with nobody talking to her and I always think why does no one ever sign to her? Why does nobody attempt to sign to her or even ask ‘how do I sign to her?'” Lesley said.
‘My husband has been learning BSL level 1, I’ve been working all the hours I can and learning sign language off mobile phone apps and we’ve picked up what she comes home from school with but there’s no support for parents to learn sign language if their children are deaf.
“The Children’s ward nurses are learning two signs a week at the moment but the nurses have got no support to learn sign language, no professional teaching them – they’re teaching each other and doing their best.
“The nurses learning sign is the difference between communication and no communication because nobody ever speaks to Amelie in hospital. The play specialist in the video we made about signing in the NHS, called Dave, learned the basics in five days and I thought, it took him five days to learn that and took nine years for everybody else to do nothing. So to me, him learning sign language was massive.”
“Every time a nurse goes to do something invasive to her and I tell them that Amelie is deaf and can’t talk, they look at me instead and tell me what they’re going to do to her – but I’m not the patient, she is. I’ve started saying to nurses that they shouldn’t touch her unless they have communicated with her about what they’re going to do because she won’t just comply and offer parts of her body or the tubes or the clamps – she’s not stupid and sensitive about her own body like everyone else.”
“Other girls her age wouldn’t tolerate it so why should she.”
You can read more about Amelia on her blog here
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