How research is tackling the emotional impact of MS
Improving support after diagnosis
The support that people affected by MS want, or need, often changes with time. That’s why health professionals across the UK are working to make sure symptom management and emotional support are offered to everyone as standard, throughout the course of their condition.
For example, getting a diagnosis of MS can be frightening, overwhelming, or, for some, even a relief after so long of not knowing. It's important that support is available at this time. We’re supporting Professor Roshan das Nair at the University of Nottingham who’s working to improve the experience people with MS have at diagnosis.
Adjusting to life with MS
For many people with MS, the hardest time can be when symptoms become visible, such as if you need to start using a walking aid. This can be because it changes your perception of yourself, and may affect confidence.
Dr Angeliki Bogosian at King's College London is learning from people with progressive MS about how they adjust to their new diagnosis. She‘s found that many people cope by scaling back goals and focusing on one or two critical areas. That doesn’t mean giving up on their dreams, but often involves prioritising the things they enjoy.
The benefits of CBT
Professor Rona Moss-Morris, a health psychologist at King’s College London, says it's important not to assume that everyone in distress needs treatment. Showing signs of distress is a coping mechanism and can be a way of breaking down barriers, opening up the support of friends and family.
It’s when distress stops you from being able to do what you want to do that support such as Cognitive Behavioural Therapy (CBT) can be important. A trial funded by the MS Scoiety by the MS Society, showed that CBT really benefits people with MS who are in distress.
Specialist emotional support for MS
It's also not unusual to experience depression, stress and anxiety when you have MS. There are standard management programmes for anxiety and depression available on the NHS, such as CBT. But many people feel that these standard programmes don’t acknowledge the specific challenges of long term condition like MS.
One study found that Skype-delivered mindfulness sessions adapted for people with progressive MS led to a reduction in distress after 3 months. People also reported improvements in depression and anxiety. And Rona Moss-Morris and her team worked with psychologists and people with long term conditions to develop an online CBT treatment called COMPASS, to help people navigate their long term condition. In the future, the team hope to start developing condition-specific versions, such as for MS.
Preventing job loss
We know that 80% of people with MS leave employment within ten years of their diagnosis. Research shows that this is not only down to the type of MS symptoms or degree of disability someone has but that psychological factors are also important.
A new type of therapy called acceptance and commitment therapy (ACT) has been shown to improve people’s belief in their own ability to achieve their goals. We’re supporting Dr Helen Ford in Leeds to test if ACT can help people with MS to stay in work.
This blog first appeared in Research matters magazine and was updated in May 2020 to reflect this latest research. To receive Research Matters by post please contact firstname.lastname@example.org about subscription. You can also download recent issues of the magazine.