The Multiple Sclerosis Trust has released a new report which highlights the importance of our ongoing campaign to secure accessible care for people living with multiple sclerosis.
We know that MS is unpredictable, and can result in a wide range of symptoms. Although many are 'invisible' to others, these symptoms can still erode aspects of everyday life if access to specialist care is not made readily available. The MS Trust have this week released a new report Life changing: the hopes and fears of the MS community in 2022 (PDF, 1.5MB), which explores the personal experiences of people living with MS in the UK today.
For the first time, we co-produced our survey with people living with MS, to ensure that we were asking the right questions. We heard that MS touches every part of life, and that people with MS wanted to be able to express that in this survey. Over 715 people living with MS completed our finished survey, which revealed that 94% have seen a direct impact on their mental health or wellbeing due to their condition. 88% of the people who responded said that they feel unable to cope with some aspects of life with MS.
Living with multiple sclerosis can place an additional burden on relationships, with 63% of people who completed the survey admitting to being more reliant on a partner, friend or family member. 90% of respondents said their hobbies and pastimes had been impacted by their MS and 56% were unable to partake in the activities they once enjoyed.
Work and finances are also affected by MS, which is even more challenging against a backdrop of rising costs of living. 88% of respondents have seen a negative impact on their career since diagnosis, with 36% giving up work or medically retiring. Meanwhile, 70% of people reflected that the diagnosis has impacted their overall financial status.
I used to be incredibly independent and strong and now sometimes I need to rely on others.
Jayne, person living with MS
These stark figures show that people with MS may be feeling insecure and worried for their future. In March 2022, the MS Trust released a Nurse Mapping report which revealed that there is a national shortage of 149 MS nurses, leaving thousands of people without the vital MS care and support they need.
The MS Trust believes that there is more that can and should be done about this. We are the only charity working with the NHS to place additional MS health specialists in the areas of greatest need across the UK. We continue to run our information service which provides a lifeline for people dealing with the complex issues associated with MS when they are unable access other specialist support.
This MS Awareness week the MS Trust is raising awareness of the direct impact the lack of accessible care is having on the everyday lives of people living with multiple sclerosis. We hear directly from the thousands of people who contact us each year about the difference that can be made to lives by having the correct care and adjustments in place.
If you or someone you know are struggling with aspects of life as a result of living with MS do get in touch with the MS Trust helpline on 0800 032 38 39 or ask@mstrust.org.uk
