Standing up for Leuchie’s guests

Last week we took Leuchie guest Bob to the Apple store on a mission to find a truly accessible mobile phone.

Bob, who’s 70, has MS and no mobility at all, except to move his head about an inch. Because he lives alone, he’s been increasingly concerned about security and his ability to get help quickly in the event of a fire or other emergency.

The Leuchie team stepped in to take him to find a mobile phone with voice activation he could speak to if he needed to call the emergency services and to answer calls. He discovered on his trip to the phone store that while the first is possible, the second isn’t. As Bob put it, what use is a phone if you can’t answer it? We’ve contacted Apple HQ on his behalf to see if they’ll address this, potentially making a huge difference to many disabled people.

We’re finding this kind of advocacy role is becoming an increasingly important part of our work at Leuchie. Particularly for our guests whose illness is in the more advanced stages, there is often no one actively reviewing their changing needs.

The focus of any support tends to be on providing their personal care, rather than looking at their quality of life and whether their home environment is still appropriate as their situation changes.

In recent weeks, the completely inadequate housing situation of more and more of our guests has been coming to light.

To give you just one example, one of our guests, who is a permanent wheelchair user, lives alone in a second floor flat. As a result he never gets out – ever - except for two short breaks a year at Leuchie. I find it unimaginable to think of being shut up in the same small space, day after day, becoming increasingly isolated and disconnected from the outside world. We know this is just the tip of the iceberg.

Next month, the Scottish Government will launch a consultation on Scotland’s first National Action Plan on Neurological Conditions. We’ll relish this opportunity to help people with long term conditions get the support they need.

Mairi O'Keefe, Chief Executive, Leuchie House. Published in the East Lothian Courier, 13 September 2018.