IJMSC Insights: Blanca De Dios Perez on Employment and Multiple Sclerosis

Blanca De Dios Perez, PhD

Image credit: LinkedIn

Blanca De Dios Perez, PhD, is a senior research fellow at the University of Nottingham in England, where she is working in vocational rehabilitation for people with multiple sclerosis (MS). In 2024, she was awarded an MS Society Early Career Fellowship. In July 2024, the International Journal of MS Care (IJMSC) published her paper about COVID-19 and its impact on the employment of people with MS. She joined IJMSC to discuss that paper and her current work.

International Journal of MS Care: How did you get involved with research on neurological diseases?

Blanca De Dios Perez, PhD: My background is in psychology, and when I completed my bachelor’s degree, I specialized in neuropsychology. I have an interest in understanding how different neurological conditions can affect behavior and also how people engage with activities of daily living. It was through my bachelor’s degree that I started working with people with multiple sclerosis.

IJMSC: Why did you choose to focus on employment? What did you find interesting about it?

BDDP: Once I completed my degree, I moved to the United Kingdom [UK] to the University of Manchester, and I completed a master’s in philosophy. I was interested in understanding how accurately and how [quickly] people were naming pictures of objects. During that study, I had the opportunity to work with more than 100 people with MS….They were all very different and had some really interesting careers: a personal trainer, a professor, teachers, a wide range of jobs. During their infusion [therapy] time at the hospital, they would share with me their experiences at work, their challenges, and I could tell this was something they were very passionate about. I’m quite career-driven, so I do understand that work is important to all of us for multiple reasons….[I started] thinking about the implications of these difficulties in the context of work, and so I started doing a bit of research on the topic of MS unemployment, and I found a PhD [track] at the University of Nottingham that focused on developing a program to help people with MS remain in paid employment.

IJMSC: Why is work an important area to research in neurological disease? What are the specialized areas or topics that come up with the intersection of MS and employment?

BDDP: The reason work is important…is because work is good for health. We [also] know that work is good for economic reasons, as it allows the person to be independent for longer, have access to resources and services, engage in society with coworkers....It’s also good for our emotional well-being. It helps give us a sense of purpose and identity. For people with neurological conditions, those who are unemployed experience the highest levels of anxiety and depression and reduced quality of life. For example, in the case of people with MS, we know that those who work full-time experience better levels of cognitive ability, reduced levels of fatigue, and improved mobility, even compared with those who are working part-time. In the field of neurological conditions, focusing on employment is very good because it can help us improve how people self-manage their symptoms and [improve] their overall quality of life.

IJMSC: Can you compare MS with other neurological diseases? Are there things that you would say are specific to MS and employment?

BDDP: Most of my research has focused on vocational rehabilitation for people with MS….I think the key thing to consider is the onset of the condition, which will determine the different needs that people have at work. If you have a neurological condition with a sudden onset, for example, a stroke or traumatic brain injury, [the condition] can be intermittent and unpredictable—for example, epilepsy. Then we have progressive neurological conditions, such as Parkinson [disease], and then those that are stable neurological conditions such as cerebral palsy. MS fits into 2 categories. It’s a progressive neurological condition, but it’s also intermittent and unpredictable. So the difference we see is that, for example, with a stroke or traumatic brain injury, the person might [have] a normal professional life, then they have the onset of the neurological condition, and the person needs support to return to work. In the case of MS, we know from research [that the individual] may have been experiencing difficulties at work for several years before diagnosis, and we know that people may miss days of work even 5 years before diagnosis. So at the point of diagnosis of MS, the person may already have higher sick-leave levels or a worse relationship with their employer. [Another] difference between MS and other people with MS [is seen in] young women diagnosed between 20 to 40 years of age. You may see an employee who looks perfectly fine on the outside but requires some support to manage pain, to manage fatigue. Some days, the person may have mobility difficulties, others not. That leads to some areas of conflict in the context of work that need to be addressed with vocational rehabilitation. For example, a stroke survivor, if they have mobility difficulties in a part of the body, it would be more visible to the employer, [who] therefore [may be] more sympathetic about making changes.

So at the point of diagnosis of MS, the person may already have higher sick-leave levels or a worse relationship with their employer. [Another] difference between MS and other people with MS [is seen in] young women diagnosed between 20 to 40 years of age. You may see an employee who looks perfectly fine on the outside but requires some support to manage pain, to manage fatigue. Some days, the person may have mobility difficulties, others not. That leads to some areas of conflict in the context of work that need to be addressed with vocational rehabilitation.

IJMSC: The idea of disability visibility is interesting. As you said, there’s a sudden onset for trauma and stroke, but MS is a progressive disease, so it might be hard to say at the very beginning, “I have this disease. I need accommodations.” Some people may not even have a diagnosis at that point.

Tell me a little bit about your paper that was published in IJMSC, “The Impact of COVID-19 on the Employment of People With Multiple Sclerosis.”

BDDP: That was developed during my PhD as an additional study. I spent approximately 2 years developing a program to help people with MS at work. We had all the study documents, we had ethical approval, and we were ready to get started delivering an in-person program of support, and then the pandemic started…the month we were going to start recruitment. [I wondered if I would] be able to deliver the study….We [spent] 2 years understanding [how to] support people with MS at work, but it might be completely different right now. We needed to understand what was happening in the UK with the employment of people with MS [at that moment]. We decided to do a study that [would] help us quickly capture the changes in the employment circumstances of people with MS. In the case of the UK, the COVID-19 pandemic led to approximately half of the work population being unable to work temporarily, so we set out to explore the needs of people with MS at work during the COVID-19 pandemic. Even though it was a really challenging situation and there [was] uncertainty that also led to some anxiety and distress because of a fear of getting COVID-19, especially for those who were receiving certain treatments, we developed a survey, and we obtained data from 101 people with MS. Then we did interviews with 15 of [them] to understand the findings in more detail. I think the key finding that I would like to highlight from this study…is that because a lot of people were allowed to work from home during the pandemic, they didn’t have the rigid context of work that limited them in terms of when they could take breaks or how they should do their work. They were able to organize their workload according to how their symptoms fluctuated. Maybe one day they work 6 hours, but the next day they are feeling fully energetic and can do 10 hours, and they compensate for the 2 hours they didn’t work. Another day, perhaps people were able to take a brief nap at home or just be in a quiet space at a comfortable temperature. Sometimes a person might wake up feeling a little bit unwell or with some pain in the legs and cannot walk to take public transport to the office; [previously,] the employer might force them to take a full day off work, but because they were working from home, nobody needed to know about those difficulties. They didn’t need to take sick leave, and they were able to self-manage….This workplace flexibility really helped them to manage their symptoms, and [employers might be] more satisfied with their performance at work because they were having fewer issues.

IJMSC: And do you see that the pandemic had an influence as we’ve progressed further from the intense period of lockdowns and quarantines? Have employers adjusted? Have people with MS adjusted, or have we returned to how it was?

BDDP: That’s a really interesting question, and I think, unfortunately, we are returning a little bit to the pre–COVID-19 scenario: Employers are driving the push to get people back to the office and not allowing people to work from home, even though during the pandemic, we saw they could do the jobs from home. I think we are still in an in-between, and it depends significantly on the industry….We know that workplace inflexibility is one of the main factors contributing to job loss and unemployment for people with disabilities, so, hopefully, organizations or industries are doing some analysis on the productivity of employees during the pandemic. [Also, flexibility was] not only good for people with illnesses or disabilities but also for the general employees in an organization to keep them more satisfied at work.

IJMSC: What was the path to the research that led to your latest paper, “Implementing Vocational Rehabilitation for People With Multiple Sclerosis in the UK National Health Service”?

BDDP: As part of my PhD, we developed, implemented, and tested a job retention vocational rehabilitation intervention for people with MS, and we tested this in a community setting, meaning outside of a hospital. We explored what the best context to deliver this sort of support [would be], and we thought, people are diagnosed with MS in the NHS [UK’s National Health Service], and they receive their treatment there, so we set out to explore whether we could deliver vocational rehabilitation within the NHS. We recruited 2 hospitals, and the target was to recruit 20 people with MS to receive the support and 1 occupational therapist working for the NHS to deliver the support….There were some challenges in recruiting the occupational therapist. Because of the pandemic, [they] had been moved to different roles to cope with the demands of the hospitals, and they had not returned to their original posts. Overall, the people receiving the support [found] it acceptable. We focused particularly on addressing fatigue management and identifying and requesting support with reasonable adjustments, or modifications, to work demands or duties to overcome the difficulties of MS. There were several challenges, though. [For instance,] health care appointments are quite short. We also recruited people who had had MS for approximately 11 years, and we would have liked to recruit them a little bit earlier on the diagnostic pathway….The lack of resources and the restructuring needed in the health care service to offer this at a wider scale mean that we need to do a bit more work to understand how this could be expanded. We still have a few question marks about feasibility.

IJMSC: What are you currently working on? What is the next step in your research?

BDDP: I concluded that study in April 2024, and I have just been awarded an early career fellowship from the MS Society in the UK. Because of the NHS challenges we explored, and due to the feedback from our participants with MS, [we are looking at MS nonprofit organizations]. [Our participants said] how, once they were diagnosed, instead of bringing the topic of employment up with their health care professional, they go to [nonprofit organizations] for information. What I am exploring is, can we upskill professionals working for MS charities to offer employment support? I am working to optimize access to vocational rehabilitation and understand what sort of levels of information and advice can be provided by these organizations so that we can lessen the impact on the health care system; it might be more suitable to offer support at higher, more complex levels.

What I am exploring is, can we upskill professionals working for MS charities to offer employment support? I am working to optimize access to vocational rehabilitation and understand what sort of levels of information and advice can be provided by these organizations so that we can lessen the impact on the health care system; it might be more suitable to offer support at higher, more complex levels.

IJMSC: One of the big topics in 2024 in the MS research field is diversity, including the problems with recruiting a diverse cohort for research. Is diversity a part of your research? If it is, how do you conceptualize it as a part of the whole research question, and how do you facilitate diversity?

BDDP: Diversity is indeed part of our research. It is essential, and we strive to recruit a diverse sample of participants. However, it is very challenging….We want to develop programs that can be implemented within the health care service, within society, that meet the needs of everyone, not just a few. Unfortunately, we continue to recruit [mainly] White middle-class adults into our studies. We need to explore additional approaches to recruit more diverse groups in terms of ethnicity, sex, socioeconomic status, and other variables of interest for our research studies. We try to overcome these barriers by developing, for example, recruiting matrices to ensure we explore all the variables in terms of diversity for our studies, and we [look for ways] to contact key stakeholders to find participants. For example, [we] contact organizations in areas of the country that have higher levels of diversity, but this is still challenging for all our studies.

IJMSC: Do you have any perspective on the difference between systems; for example, the NHS in the UK vs another system in another country? It’s a very specific setup.

BDDP: This is something of interest to me, and I am trying to get more acquainted with the differences among the health care services in other countries because, in the UK, there is public health care [and] in the United States [there] is private health care. [This influences] what services [are available] and how people are referred to the services, and I am still trying to learn the differences and how they work. I know, for example, that Nordic countries are doing a much better job because they have a better integration between health care and employment services, so the employer feels more responsible for the health of the employee. So if a person is [absent] because of MS or another health condition, they will play a role in supporting the person [to return to] work. It is complex. The way different countries are structured and how their health care services work play a significant role in how many people will remain employed. [There is also] the welfare system. In some places, the welfare system is very well-funded, so people will be able to be off work for a longer time and secure adequate recovery before getting back to work. In other places, the welfare system is not so good, and it makes it more challenging for the person to recover properly. But in terms of the core support needed and employers understanding MS, accommodating workplace support, and managing fatigue, cognition, and pain—the context of pain in the context of work is the same, regardless of the country.

IJMSC: What is on the horizon for you in 2025?

BDDP: I just returned from a trip to Norway. I visited an MS treatment center where they offer a wide range of rehabilitation services to people with MS. I’ve also traveled to Australia [recently and] visited [with] academics and clinicians [who] are supporting stroke survivors’ return to work. I’m currently working on a grant encompassing Australia, Norway, Italy, and the UK to develop interventions to support people with MS with targets of not only the person with MS but also different organizations and the needs of employers.

As I mentioned earlier, I just secured a fellowship, and I am also exploring how MS charities in the UK can offer support with employment. Employers play an essential role and providing education and information to employers could be hugely beneficial. 2025 will be a busy year.