Giving people the tools to stay in work
Professor Helen Ford is a Consultant Neurologist and Professor of Neurology at the University of Leeds. We spoke to Helen about her team’s work empowering people with MS with the psychological tools to stay and thrive in their careers.
Can you tell us a bit about the background of your work?
We’ve spent over a decade researching employment challenges faced by people living with MS. We saw that people with MS were leaving work much earlier than others with similar long-term conditions and wanted to understand why.
At first we assumed mental health factors like anxiety and depression would be the main causes. But we found that resilience and a concept called ‘self-efficacy’ — the belief that you can succeed in a certain setting — played a much stronger role.
So, we focussed on how we could help people with MS build resilience and confidence to navigate challenging situations in the workplace.
You’re using Acceptance and Commitment Therapy (ACT). Can you explain what that is?
Instead, ACT is about accepting your situation and developing strategies to manage the challenges. Techniques include mindfulness, and something called ‘defusion’ which allows you to step back from unhelpful thoughts. ACT has been shown to be helpful for people with MS in other contexts.
Can you tell us about the READY programme and how it inspired your own work?
We’d heard positive feedback about READY, an ACT-based programme developed for healthcare professionals and students in Australia. We thought about how we could adapt it for our NHS teams. That led us to create a tailored ACT programme to offer resilience training to both healthcare professionals and people with MS.
What were the results of your initial pilot study?
MS-PROACTIVE was a pilot study with 90 participants across three centres. We wanted to test whether our programme was helpful for people with MS and identify areas for improvement.
We saw improvements in self-efficacy (belief in your ability to reach your goal), and interestingly, a reduction in work instability. This is the risk of a person losing their job, which can be influenced by external factors.
What does the programme involve?
It’s structured around weekly 30-minute online sessions, although many people revisit certain exercises multiple times. We co-produced the programme with people living with MS. They helped shape both the content and the design of the platform to make sure it was suitable.
What barriers do people with MS face in accessing psychological or work-related support?
The biggest barrier is the shortage of neuropsychologists. People who took part in our study made it clear they needed a flexible option. Something they could manage in their own time without multiple hospital appointments. That is why we focused on the digital format.
What’s the next step to make it widely accessible?
We believe healthcare professionals can also benefit from building their own resilience and self-efficacy. It also better prepares them to support people with MS.
So far in our study, INTERACT-MS, six NHS sites are involved, each training five team members. These team members will then support people with MS through the programme. We’re collecting data at the start, after eight weeks, and after six months. We’re also gathering real-time user feedback to improve the programme.
What do you hope the long-term impact will be?
Work offers so many benefits beyond financial stability. It’s also tied to identity and self-worth. We’ve already seen how powerful this programme can be. We hope that it helps people with MS to manage the ongoing challenges they face in the workplace and beyond.
In partnership with the Work Foundation at Lancaster University, we asked 1,125 people about their experiences of living and working with MS. We recently published our findings in a joint report: No compromises: supporting people with MS to thrive in and out of work.
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