Seventy-one per cent of people living with or affected by multiple sclerosis (MS) in the UK experience loneliness and isolation, or have done in the past, according to a new report by MS-UK.
Results from research which included an online survey, and several focus groups up and down the country, revealed that people with MS often don’t like speaking out about loneliness for fear of being viewed as a burden. One respondent described their experience as “being a viewer of the world and not a part of it,” while another said it was “having no one to share time and life with, to communicate and laugh with, wake up in the morning with, turn to, speak to and share worries with.”
The Campaign to End Loneliness cites the plight as being as bad for your health as smoking 15 cigarettes a day, with lonely people more likely to suffer dementia and heart disease.
While our Loneliness and Isolation Report makes for difficult reading, we are determined to bring about positive change as a result of our findings. Raising awareness of MS was a suggestion that came up repeatedly during the research. MS-UK is committed to increasing people’s understanding of the condition and will use these findings to strengthen and focus its strategy going forwards.
Signposting is a common tool used within service provision, where professionals direct individuals to other services that support their identified needs and this was seen as a key area of development in promoting independence for people affected by MS. MS-UK’s helpline staff will continue to signpost anyone affected by MS.
We will develop with the MS community a new online forum for people affected by MS to ensure it meets their needs, provides choice and is based upon the values which guide its work.
The report also calls upon those planning our communities and public spaces to put a bigger emphasis on accessibility to allow people with disabilities to be able to use them. It highlighted the fact that access to transport is still a major barrier for many people with MS leaving the house, and therefore increases loneliness, and that the design and availability of adequate toilet facilities has not reached the level it should be across the UK yet.
“The impact of feeling lonely on people’s health is considerable and can result in an increased risk of depression, low self-esteem, reported sleep problems and increased stress response,” says Amy Woolf, CEO of MS-UK. “Depressive disorders occur at high rates among patients with MS and this can have a major, negative impact on peoples’ quality of life. Now is the time to take positive steps, so that people affected by MS in the future are less likely to experience loneliness and isolation.
We have chosen to launch this report during Loneliness Awareness Week as we are aware that wider society is experiencing loneliness and isolation like never before. The research for this paper was carried out last year, before the pandemic. “We hope that if anything positive can come out of the current situation, it is a newfound empathy for people who experience loneliness and isolation before, and sadly after lockdown,” says Amy. “We hope our report will resonate with people and inspire them to support our work or work with us so we can shed a light on life with MS and decrease loneliness and isolation.”
Download the report
If you are affected by the contents of this report and need emotional support please contact our helpline free on 0800 783 0518.