“It’s Easier Not To Bother” – How Thousands Of People With MS Are ‘Imprisoned’ At Home By Inaccessible Cities

According to the Multiple Sclerosis Trust, an estimated 2.9 million people in the world have multiple sclerosis (MS). The UK has more than 150,000 people living with MS.

MS is characterised by symptoms such as blurred vision, numbness throughout the body, muscle stiffness, feeling uncoordinated end problems with memory and concentration.

Now, a report released by the Multiple Sclerosis Trust has revealed that thousands of people living with MS are effectively ‘imprisoned’ in their own homes.

People with MS reported 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. The Multiple Sclerosis Trust warns that if this 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.

Charlotte, 30, has been housebound since her 20′s

Charlotte, is only 30 and was “housebound” in her 20s, she said that a lack of accessible transport and uneven pavements forced her to be housebound and question the point of living. She states that “small fixes would be a lifeline for thousands like me”.

The MS Trust said that the impact on the mental and physical health of those who are forced into being housebound by their condition is a major concern. More than 70% reported that transport problems impacted their mental health, with around 77% feeling isolated and more than half of respondents saying they would leave their house more often if support was available.

Charlotte said “Most people take going out for granted but I need to plan it carefully. Sometimes the effort is too much. Uneven pavements, or someone parking on the pavement, and a lack of accessible public transport makes it impossible to go out.”

Charlotte is far from alone. In fact, a staggering 90% said that uneven pavements, limited dropped kerbs, or cars parked on the pavement made it difficult to move around outside.

Another anonymous survey respondent said: “I find myself becoming more and more reluctant to leave home. It’s hard work, I’m tired out by my pain, and the mental stress it creates in planning and executing a journey of any length is exhausting. If I get there, will I be able to get home? It’s easier not to bother.” 

It doesn’t have to be this way

While MS can be debilitating, those who live with the condition should be able to live relatively independent lives. 

Lucy Taylor, CEO of the MS Trust said, “The moment you have a condition like MS that can make walking difficult, you realise how inaccessible many of our towns are as a result of inadequate public transport, uneven pavements, and narrow shop doorways.

“We are committed to raising awareness of what living with MS day to day is like – and the world of difference it makes to people with MS when support is available.”

As part of the Advanced MS Champions programme, the MS Trust is working with the NHS to identify and help those who are isolated or at risk of being housebound due to MS. For more information, please visit www.mstrust.org.uk

Help and support:

• Mind, open Monday to Friday, 9am-6pm on 0300 123 3393.
• Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI – this number is FREE to call and will not appear on your phone bill).
• CALM (the Campaign Against Living Miserably) offer a helpline open 5pm-midnight, 365 days a year, on 0800 58 58 58, and a webchat service.
• The Mix is a free support service for people under 25. Call 0808 808 4994 or email [email protected]
• Rethink Mental Illness offers practical help through its advice line which can be reached on 0808 801 0525 (Monday to Friday 10am-4pm). More info can be found on rethink.org.