“Motor Neurone Disease won’t stop me – woo hoo!”

The Motor Neurone Disease Association [MNDA] says that there are around 250 people living with the disease in Wales. This is an incurable and progressive, neurological disease and life expectancy is usually two to five years from the onset of symptoms.

MND is a terrible diagnosis for anyone to receive. However, the job of therapists such as Speech and Language Therapists [SALTs] is to support patients to make the most of the time they have and to live as well and as independently as possible.

Pauline says that her mother had no option but to go into a nursing home when her care needs increased. The Community SALT Team in Newport provide support for patients with swallowing and communication disorders – our primary aim is to keep people living in their own homes. Or even to go on a cruise, like Pauline!

The team is funded by Welsh Government’s Regional Integration Fund [RIF], which is a five-year programme (2022-27) to deliver change in the way health and social care are provided. Our project demonstrates how health and social care can work together to ensure that people with complex needs can live closer to or even in their own homes. The SALTs work as part of a team around people like Pauline. Other allied professionals include social services, occupational therapists, physiotherapists and specialist organisations like MNDA.

For Pauline, our involvement has meant she still has a voice that she can use to advocate for herself and express her wishes – most importantly, it enables her to talk to her children and grandchildren. As Pauline’s condition has deteriorated, the SALT community team have provided timely help to avoid swallowing-related complications and infections.

Since this Patient Story was made, Pauline was able to enjoy her cruise, including all the food – as she said, she didn’t let MND stop her! Sadly, as this is a progressive disease, her condition is deteriorating. However, she now has her PEG fitted and regularly uses her communication device.

We will continue to support Pauline to navigate the later stages of the disease and support her to carry out her own wishes as far as possible. This means staying in her own home, and even though she is now peg-fed, enjoying a chocolate button or two.

We hope that you will enjoy hearing Pauline telling her own story in this video.