Support available for people with MS
As many of you are aware, there are a multitude of symptoms that come with a diagnosis of MS, and needs that change over the course of the illness (or even in the course of a day for many of us too!). Psychological support can help to ease the burden that comes as a result of dealing with the impact of such symptoms. There are many sources of support available; from the less formal sources such as family and friends to more formal psychological support provided by qualified mental health practitioners, such as counsellors or psychologists. Alternatively, there are MS specialists such as MS nurses and MS charities/organisations. There may be any number of reasons to turn to one over the other at different times in life for different things.
Three quarters of people with MS turn to support
In a survey that many of you OMSers kindly completed for us a year or two ago, we found that three quarters of people with MS are indeed turning to more than one of these sources of psychological support. This almost always occurs alongside the support of friends, family and/or MS peers in order to meet the full spectrum of needs that people with MS have. People turn to friends, family, peers and mental health professionals more frequently for emotional support, and MS organisations/charities and specialist MS nurses more frequently for learning skills to manage their MS.
We found that that this pattern of accessing support is driven by how well the support provider knows the individual and/or MS, alongside expectations and availability of emotional and informational guidance as components of psychological support.
The limitations of the role of friends and family
Friends, family and peers are being turned to by the majority of people and provide ongoing support from the point of diagnosis. This is usually sufficient until the more intrusive symptoms, particularly fatigue or psychological symptoms causing psychological distress beyond what can be managed with support from friends and family.
This highlights the need for different MS related services and caregivers to come together to provide the necessary support for PwMS with different needs that are sometimes better fulfilled by differing people, ensuring all needs can be met more effectively.
You can read the full paper here: https://doi.org/10.1016/j.msard.2022.103666
Read Hannah's previous findings from part of her PhD study into psychological support in MS: COVID-19 and mental health | Overcoming MS