Sight-impaired woman 'disempowered' by hospital during pregnancy

A woman with a sight impairment said she felt "disempowered" after not being able to access her own medical records easily during her pregnancy.

Jenny Molineux, 42, from Rawtenstall, gave birth to her daughter Theadora four years ago at the Lancashire Women & Newborn Centre at Burnley Hospital.

She said the lack of accessibility "added a whole extra layer of anxiety" and "nobody really knew how to support a visually impaired mum".

East Lancashire Hospital Trust (ELHT) said its maternity services had made real progress in improving how accessible information was, but that there was more to do.

Jenny has reverse retinitis pigmentosa, a degenerative condition which has severely blurred her vision.

At her initial booking-in appointment with a midwife after becoming pregnant in September 2021, she was handed a white book.

"Your book had all the information in that you needed, it had all your contact telephone numbers, it had everything, but unfortunately for me I just wasn't able to access it," she said.

Jenny said she had to sit down with a family member "and we had to go through every single number and programme it into my phone" in case something happened when she was alone.

Jenny said it was "quite disempowering not to be able to access your own personal health information" and having to rely on other people to read out test results throughout her pregnancy.

The Trust said it had since introduced a "Trust-wide Accessible Information Group" to help it make changes to its maternity services.

And it has introduced "postnatal discharge videos" that are accessible for sight-impaired people.

Jenny said the changes were "music to my ears", and helped her feel "confident that another visually impaired mum... can access their information in their preferred format."

However, Jenny said "it would have been lovely to have had that" during her own pregnancy.

The Divisional Director of Midwifery and Nursing for ELHT, Tracy Thompson, said: "Over the last few years, ELHT maternity services have made real progress in improving how accessible our information is.

"We know there is always more to do and we are committed to listening, learning and continuing to improve the accessibility of our information and services for everyone in the communities we serve."

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