A new report by the MS Trust, reveals that thousands of people living with multiple sclerosis are effectively ‘imprisoned’ in their own homes, due to uneven pavements, inaccessible town centres and inadequate public transport.
The MS Trust Life Changing: Getting around with MS report shows this is sadly the case for many people living with MS across the UK – with the Trust estimating that around 96,000 people with MS are unable to leave their house without help, either some of the time, or every time.
Rebekah, 52 from Hastings said her life changed dramatically when she was diagnosed with MS four years ago. She went from working to having difficulty getting out of bed. She says “Living with MS is a struggle every day. Going anywhere is like walking through thick, thick snow. It can be a huge effort to get out of the house. Sometimes, my fear of falling is so great, I can’t face going out.”
The MS Trust report shows that a staggering 90% of respondents said that uneven pavements, limited dropped kerbs, or cars parked on the pavement made it difficult to move around outside. Rebekah adds “I find walking outside a real struggle because the pavements are very uneven. There's a slab outside my house - you think I'd know it - but I've fallen over it about 10 times. It happens all the time”.
Rebekah is able to get out of the house with the help of her carers that she pays for through disability support, also known as Personal Independence Payment (PIP). She says this support has “saved her and her son’s lives”, but the process of applying for PIP was “overwhelming”.
The MS Trust’s report found that there are many people living with MS who are missing out on financial support. The report found that 60% of respondents are unaware of the support available, and 30% who had looked at applying for support reported that the forms were too long and complicated to fill in.
Rebekah says, “It shouldn’t have to be this difficult to get help. The application form for PIP is like the yellow pages - that’s ridiculous since most of the people applying for it would find it near-impossible to fill in without help - and you can’t always assume that everyone has an adult available to help them.”In the end, the only way to complete the PIP application was for Rebekah’s young son to fill in the lengthy form for her, which was distressing as she had to tell him many details of how she suffers with MS. Rebekah’s son, Leo was 14 at the time she was diagnosed and stopped going to school because he was petrified that Rebekah would fall while he was out. Rebekah said that the months they struggled without any paid carer support was immensely tough for all of them and led to her being depressed.
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. Their report shows that 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. Now Rebekah’s son Leo has just started his degree at Oxford University – an achievement that Rebekah is immensely proud of, and she says was “only possible as a result of securing paid carer support through PIP”.
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