Life changing: getting around with MS

The Multiple Sclerosis Trust has released a new report which highlights the impact of MS on travel and transport outside the home.

Our research shines a light on the significant and complex challenges facing people with MS when looking to travel outside their homes. We want to thank the 999 people with MS who shared their experiences in our survey.

You told us that MS symptoms, especially fatigue, pain, mobility and toilet issues are at the heart of travel problems, and can make it difficult to get around outside the home. 80% of survey respondents told us bladder & bowel symptoms affected their ability to travel, and 73% of respondents told us MS fatigue has a moderate to severe impact on getting around. 

You also explained that complicated benefit and support schemes make finding help unnecessarily difficult. This is made harder by the cognitive symptoms of MS such as 'cog fog' and mental fatigue. 60% told us they didn’t know what support was available to help with travel and travel costs, and 30% who had looked at gaining support said the forms were too long and complicated to fill in. 

When it comes to the streets around your homes, you told us that poorly maintained pavements, thoughtless car parking and insensitive urban planning prevent many with MS from traveling safely. Over 90% told us uneven or dangerous pavement surfaces made it harder to get around outside. 

It is clear that people with MS in lower-income households face greater challenges. 35% of people said that cost was the biggest barrier to accessing the right mobility aids for their situation, such as power chairs or motor scooters. 

One major concern is the impact of these barriers to independent travel on feelings of isolation and loneliness. 77% of our survey respondents felt isolated at least some of the time due to their travel and transport issues. Over 50% said they’d go out more if their transport needs were met. 

You can read our report, Life changing: getting around with MS (PDF, 1000KB)

People with MS told us that they often rely on family and friends to help them get out and about. Over 66% said they need support some or all of the time. If that is the case for the whole MS community, that could mean up to 96,000 people feeling trapped at home, at least some of the time.

Many people with MS would not think of themselves as housebound. However, the combined burdens associated with the disease are seriously restricting independent travel for many people with MS. With the effort that goes into planning a journey, managing symptoms and making sure you have the right support in place, it's not surprising that some people with MS choose not to leave their home.

Independent travel is vital to allow people with MS to get to work, socialise and connect with health and leisure activities, but our report shows that there are too many barriers in place. Uneven pavements, inaccessible town centres and inadequate public transport – along with difficulty accessing financial support – are forcing thousands of people to become prematurely housebound. 

At the MS Trust, we will be raising awareness of these barriers and providing information and support to empower people with MS to stay active and independent for as long as possible.

If you or someone you know are struggling with isolation, travel problems or other issues as a result of living with MS, you can find organisations that offer emotional support or get in touch with our MS Trust helpline on 0800 32 3839 or ask@mstrust.org.uk

• Our research and reports - collected work from the MS Trust
• Public transport - getting around on trains, buses and trams
• Driving and MS - Information about licencing and adaptive vehicles