People with MS aren’t getting enough mental health support, survey shows

New research from the MS Trust has revealed that over half (53%) of people with multiple sclerosis do not feel that their mental health needs are being met. 

The survey of nearly 3,000 people (made up of people with MS and their friends and family) also found that 72% of those living with MS felt anxious or depressed for more than several days a month and 78% of respondents were not offered any mental health support when they were diagnosed.

The unpredictable nature of MS was cited as one of the main factors as to why people are experiencing a decline in their mental health, followed by a lack of specialist support. 

The results of the survey also showed the stark reality of the impact MS can have on the emotional wellbeing of family members and friends providing regular care and support to a loved-one. 81% of respondents reported a decline in their mental health since MS became a factor in their lives and 83% said they were not offered any additional mental health support to cope with these changes.

The physical symptoms of MS are well-known, but the emotional symptoms can often go undiagnosed. Around half of all people with MS will experience depression at some time in their life. That’s three times higher than the general population. As well as being a consequence of living with a long-term condition, mental health problems can also be a direct symptom of MS, just like fatigue, balance and spasticity. Our survey showed that nearly half of people with MS (47%) weren’t aware this was the case. 

With the survey also revealing a worrying lack of mental health support for people living with MS (nearly a third have never been asked about their mental health by their MS health professional), the MS Trust is calling on the NHS and Government to offer emotional support to everybody affected by MS. The charity is backing the Neurological Alliance’s mental health consensus statement, which outlines what every person with a neurological condition should expect in terms of treatment and care for their mental, cognitive and emotional health. 

David Martin, Chief Executive at the MS Trust and Vice Chair of the Neurological Alliance, commented:

"It is deeply concerning that so many people affected by MS are not receiving the emotional support they need. Living with a long-term condition like MS does not only mean facing physical challenges, it can mean overcoming mental challenges too, and we believe it is absolutely vital that the support and information is out there to help people with MS, and loved-ones, who are struggling with their mental health.

By shining the spotlight on this incredibly important issue, we hope to show those who are experiencing mental health symptoms that they are not alone and to ensure pathways are put in place to enable everybody to access the support they need at the time that they need it."

Chris Paget, from London, started to struggle with depression when he first started being tested for MS in 2012, which was compounded on receiving his diagnosis of MS in 2017.

"I felt an overwhelming sense of shame. I was isolated and alone and I had created a situation where I was without an outlet where I could openly discuss my feelings and fears. I was depressed but too ashamed to seek help and support – I didn’t feel comfortable exposing my growing vulnerabilities."

Thanks to the support of his close friends and family, Chris eventually started to open up about his feelings and state of mind.

"I know I have a long way to go and that I have to work on my mental health on a daily basis but it was taking the initial step that was comfortably the hardest. It was only when I began to communicate that I was able to process the full range of emotions that I had harboured and then things began to feel easier. It felt like a huge weight had been lifted off my shoulders."

This April, as part of MS Awareness Week (April 20-26), the MS Trust is launching a campaign to normalise the conversation around MS and mental health and encourage people affected by MS to speak up and seek support if they are struggling.

The charity will be launching a number of new resources to support those experiencing mental health problems, including a new podcast series called ‘It’s all in your head’. In light of the Coronavirus (COVID-19) self-isolation measures now in place, the MS Trust will also be encouraging people to organise a 'Have a brew, talk it through' virtual meet-up with friends and family during MS Awareness Week, to chat about MS, mental health and everything in between.

• Coronavirus, Covid-19 and multiple sclerosis
• MS and your emotions
• MS Awareness Week