"Relatively minor issues, such as broken pavements, overhanging hedges or a lack of drop kerbs stop people with mobility problems from accessing local shops and services,” says Claire Winchester, Head of Information and Engagement at the MS Trust and author of the report.
The charity has created a new toolkit for people with MS to help them reach out to the right people in their local councils, town centres, places of interest, shops and transport companies to demand better access for people with the condition.
“The first step towards achieving change is to speak out about what you see around you,” says Claire. “Alert the right people to the problems that need solving, and get your priorities to the top of their to-do list! This is the kind of action that lifts us all.”
Susan Turley, 57, from Worthing was in her 30s when she was diagnosed with relapsing remitting multiple sclerosis, but now has secondary, progressive MS. She had to quit her job as a mental health nurse.
“My cognitive problems were causing me stress, and the more stressed I got, the more I was falling over,” she explains. “And it was quite common that I would get in my car to go home, and I'd forget to move my head as I opened the door. So I'd come home with a bleeding head because I opened the door on my head again. So I gave up work.”
The MS Trust says that when people with MS don't feel safe or able to get out independently, they frequently rely heavily on others for help, or may avoid leaving the house altogether. So it is with Sue, who relies on her husband to drive as she finds public transport overwhelming.
“I'm not very good with travelling,” she says. “If we're going out for the day and my husband's driving, we'll have to stop every 45 minutes to an hour so I can get around and walk, and I'll be stiff as a board when I get out of the car.”
She adds: “There needs to be more understanding about hidden disabilities like MS – you can look OK but the fatigue is the worst exhaustion you can imagine and it doesn’t get better if you sleep.
"One of the worst things is the attitude of other people when you're pulling into a disabled bay. It’s disgusting. I've been hit. I've been spat at. I've had people scream at me even though I have a Blue Badge.”
For more information, please visit www.mstrust.org.uk