Multiple Sclerosis and Abuse, Part 1: A Conversation With Elizabeth Morrison-Banks and Suzanne Britt

This is Part 1 of the conversation between Elizabeth Morrison-Banks, MD, MSEd, and Suzanne Britt, MSc, BMedSci, BA, RM, on individuals with multiple sclerosis (MS) and domestic violence and abuse. Click here to read Part 2.

Early in 2024, I saw a post by Suzanne Britt, MSc, BMedSci, BA, RM, on X (formerly Twitter) asking to interview neurophysiotherapists and other allied health professionals who work with individuals with multiple sclerosis (MS) about domestic violence and abuse.

This caught my eye because the 2023 Herndon Award-winning article detailed a tool to ascertain abuse and neglect in adults with MS, called STRESS-MS, that was found reasonably reliable and valid for detecting caregiver mistreatment. Wouldn’t it be interesting to bring Britt, and Elizabeth Morrison-Banks, MD, MSEd, one of the Herdon-winning authors, researchers together for a conversation on the topic?

Elizabeth Morrison-Banks, MD, MS ED

Photo courtesy of UCR Health

Morrison-Banks is a professor of clinical neurology at the University of California Riverside School of Medicine and associate dean for medical education quality. She has years of experience as an MS specialist neurologist. One focus of her research is the issue of caregiver mistreatment experienced by individuals with MS, which led to the development of the STRESS-MS screening questionnaire. Her paper describing the tool, “Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing Abuse and Neglect of Adults With Multiple Sclerosis” was published in the International Journal of MS Care (IJMSC) and won the Herndon Award for Outstanding IJMSC Article in 2023.

Suzanne Britt, MSc, BMedSci, BA, RM

Photo courtesy of LinkedIn

Britt is a registered midwife who has done work and research in the field of abuse prevention, particularly domestic abuse. Because of this background, she is currently completing a fully-funded PhD at the University of Nottingham on the response of MS clinicians to abuse. Her work emphasizes the importance of understanding the dynamics of care.

What follows is an edited transcript of their wide-ranging conversation. Morrison-Banks and Britt explore the challenges clinicians encounter when addressing mistreatment by caregivers, the significance of open communication, and the tools available to enhance patient care.

Background

Elizabeth Morrison-Banks (EM-B): My colleagues and I have been very interested in…research [about] people living with advanced MS and how some have experienced mistreatment from their caregivers.…[T]here was a dearth of research tools that were specific to mistreatment of people with MS. I was lucky to have some wonderful colleagues whose careers focused, in part, on developing ways of understanding elder abuse and neglect and also mistreatment of adults with advanced disability…not just from MS, but from other conditions as well. [T]hey had developed some tools, and we were able to work together and develop what I hope will be useful to others, a screening questionnaire [STRESS-MS] for…prevalence and extent of mistreatment of people living with MS by caregivers, mainly family members, but sometimes other informal caregivers in the home.

Suzanne Britt (SB): I didn’t start life as an MS specialist. I’m a health care professional (HCP), and, primarily, I’m a registered midwife, but I have spent a lot of time in my midwifery career working in the field of abuse, and, in particular, in the field of domestic abuse. In the [United Kingdom (UK), this covers] intimate partner abuse, but also abuse by other family members and anybody that’s in a close relationship. [T]hen I was lucky enough to be asked, 2 years ago now, to apply for a fully funded PhD scholarship [because of] the work that I was doing with domestic abuse….My work is part of a larger project…about women’s experiences with MS at all stages....My work is very much looking at the health care response and, as you quite rightly said, Dr Morrison-Banks, there is a dearth of research. I was really surprised when I came in to write a literature review, [of which] your work is a part, that there was so little work specifically around MS and even around other neurological conditions. It’s still quite an untouched area. One thing that struck me in a lot of the literature was that there was always a recommendation for HCPs to develop awareness [of] and strategies for addressing this in their interactions with people living with MS. [But to do so,] there need to be conversations directly with HCPs.…I’ve managed to speak (so far) to 40 practitioners, from neurologists to rehab professionals, physios, specialist nurses, [and] occupational therapists, about this issue and how they encounter it in people living with MS.

United Kingdom vs United States

EM-B: In any research we do here, my colleagues and I are always trying to think about how we deal with the differences [between] people who have some sort of health care insurance and those who are uninsured. How do we make sure [as best we can] that the services are adequate for all? It’s an inherent issue. I’m sure we may oversimplify it, [but] in our thoughts about the UK, everyone has access to care. I know it’s not so simple.

"Domestic abuse [and all of the things at the] intersections with social status, wealth, financial status, work status…feed into a larger picture of a person’s health."

SB: One of the things that fascinated me when I came into this field was looking at the…basic levels of care that people receive when they [start their] MS journey. The thing that struck me was the amount of time they’re in contact with health care services, and that seems to be extending [due to] earlier diagnosis, and…[the] diagnostic procedures that are available to people, and that the majority of people [will be] on disease-modifying therapy (DMT)…for a long time with regular input from health care services. Here in the UK, we do have a publicly-funded health care system, and that clearly has implications for how people access treatment.…I won’t say it’s rationed, but a lot of the time there has to be multidisciplinary discussions about who’s eligible for those treatments. There are strict criteria, and I’ve been in some of those meetings when those decisions are being made….While we might look from the outside [that] the NHS [National Health Service] is publicly funded and everybody has access to the same level of health care,…I would absolutely [say] that that doesn’t play out in reality. We also know that access to health care is very much dependent on where you live in the country. Are you close to a large teaching hospital or are you in the middle of rural area? Those things definitely feed in, including [even] things like ethnicity. So while we might say it looks as though it should be a much smoother and much more equitable journey, I don’t think it is. I also think things like domestic abuse [and all of the things at the] intersections with social status, wealth, financial status, work status…feed into a larger picture of a person’s health. It’s something I see a lot in the research as well.

Abuse and MS at All Life and Disease Stages

EM-B: I was thinking, Ms Britt, the community you’re studying in your setting—it occurred to me that in our work, we didn’t really take a specific look at women with MS who were pregnant.…Some of the women you’ve studied who are pregnant might not consider themselves to have advanced MS, and they might not define themselves as needing a carer, but I think there’s some common underlying vulnerability to that. In the work we’ve done, the investigators I’ve worked with, I don’t think we have a grasp on the meaning of all of that. I’m just thinking about the intersections between work on domestic violence and mistreatment of young adults with disabilities, some of whom are women and some of whom…are going to become pregnant and what [this] would mean for them, regardless of the level of disability. Again, more questions than answers.

SB: This work has so many layers to it. In some ways, what you were alluding to [is] this idea that when I speak to practitioners, they have an increased understanding of the fact that when somebody’s [MS] advances there are inherent vulnerabilities and inherent risks that need to be considered. In the UK, we have, [for] any adult that has additional care needs, what we call a safeguarding care plan from our local authority…that’s part of our legislative framework. So practitioners [may be] quite accustomed to having that at the forefront of their mind. If somebody becomes more advanced in their disabilities,…[do we start] thinking about neglect? Are we thinking about who’s doing hygiene, intimate needs, etc? There’s a whole area within MS…about younger people [who] may have some sort of neurocognitive impacts from MS, but hidden at that point in time [is that they also have] excessive fatigue, or maybe [they are] unable to work, or maybe [they’re] unable to live a [so-called] normal family life. [They] may be in coercive, abusive relationships that, on the outside, as HCPs, we’re maybe not seeing that level of abuse…but actually, as they become more disabled, then it [is on] our radar. I’ve spoken to a lot of HCPs, and I often say to them, “Do you think you should be asking about it at an earlier stage of the [disease]?” and they generally sort of shy away from that idea. [They] don’t want to talk about it because [they] don’t want to ruin the relationship.… But I do worry that maybe further down the line, when it might become more of an issue, [it] becomes more difficult for somebody to raise when [the patient has] more advanced disability. How do HCPs ask?

EM-B: That’s a great point. I know it’s difficult for people to bring up these issues anyway, and I certainly understand HCPs having difficulty. Maybe the patient [and their] family are new to the practice, and they’re trying to establish a good relationship with them, and it’s tough to have that first conversation include [the question], “Do you think you’re at risk of abuse or neglect?” [The] tendency may be to say, “Oh no, of course not.” But maybe we really need to get to know our patients and their families a little more before [we] have that conversation. But yes, not so much later that we miss detecting an issue that we could have helped with.

IJMSC: That makes me think of tools. When you come in for your appointment, there are assessments to establish your disease state, progression, and then [there’s] STRESS-MS [to detect caregiver neglect and abuse]. Could [these] base assessments, even [for] sensitive subjects like abuse or sexual dysfunction or bladder-bowel dysfunction, be used as tools to help the HCPs have the conversations that need to be had?

EM-B: It might be a reasonable way to start. I know [that] in clinical practice, there are so many competing priorities. It’s hard in a short visit with the time allotted to get through an entire questionnaire, no matter how concise we try to make it, and also provide other care during that appointment. But I think we have to start somewhere. I think there’s a need for maybe a truncated version [of STRESS-MS]. It’s a lot of effort to validate it, [but] I think it would be well worth it for a screening tool to highlight a subset of the people we care for, [to prompt us to think:] for this person I need to prioritize asking more questions about mistreatment. I don’t think we know who [is in] that subset, who we should be thinking about sooner [rather] than later. Of course, I think asking everyone is important, but just thinking [about it is] a practical matter to fine-tune this whole process.

"I try to [tell] them, if [you] look at the literature from Mexico, from the US, from Canada, everybody talks about competing priorities and time.…[It is] an HCP thing."

SB: I think it’s really interesting [this discussion] about time and competing priorities. Sometimes I get the impression that when I talk to people, and primarily my participants work within the National Health Service, and they talk about time and competing priorities, I think sometimes they feel that that is a specific feature of working within a publicly-funded health care service. I try to [tell] them, if [you] look at the literature from Mexico, from the US, from Canada, everybody talks about competing priorities and time.…[It is] an HCP thing: we need to make sure that our consultations get to where [we] need them to be and you make those decisions as you’re going along. You decide what [one] person needs more than [another] person.…I come from a background where it’s mandated that I ask at every opportunity…and having to ask means that you work out how to ask.…So I guess we’re still sort of making that personal decision at some point. Are we going to ask that sensitive question? One of the things that strikes me about MS is [that] you have so many sensitive areas to talk about [including] sexual function, bladder, bowel.…[There are] an awful lot of already sensitive conversations taking place.

Telemedicine

EM-B: As you were speaking, I was thinking about…telehealth, telemedicine. I know [sometimes] that’s the preference of the patient, the family. They live a long way from the clinic, or they have enough disability that they can’t [easily] get to the clinic. To me, it complicates the conversation, not always in a bad way, but we have to look for clues and still be able to use our instincts when we’re talking with the patients we take care of. With the added distance, the video camera—if the camera’s even working, sometimes it’s [only] by audio—I feel like I have even less of a handle on how to pick up [on] something.

SB: And because of your work, you’re very tuned in to that issue. [F]or another HCP who maybe wasn’t so tuned in to that issue, then…those cues are not going to even register sometimes, especially in an online consultation, a virtual consultation.…A lot of people that I’ve spoken to have said that, as you’ve [also] said, patients often prefer to have an online consultation these days because they don’t have to travel to the clinic, they don’t have to park a car, they don’t have to pay to park, they don’t have to negotiate public transport. So I think that it’s important that practitioners have some tools to be able to address issues [of] the virtual sphere that patients seem to prefer in some ways, or seem to prefer some of the time. I do wonder…if being isolated might be an issue with people being kept at home. Are they choosing to have the virtual consultation, or are they under some pressure to have a virtual consultation?

EM-B: Exactly. A double-edged sword in some ways. Sometimes…if the person with MS participating in the video visit is at home and they haven’t gone out to their car—I’ve seen that, too, where someone just says, “I’ve got to get away. There are so many people living in our apartment. I can’t even hear you unless I’m out sitting in the car.” But then we miss the…home [environment]. I don’t have any data on this, but it would be fascinating to know more about how we can best interact on a video visit in the home and [speak to] some family members who may or may not have intended to participate in the visit, but they’re in the background. It’s a different form of a home visit….I feel like we have to meet our patients where they are, and if it’s by a video visit, then we have to learn to adapt.

SB: Yes, and learn strategies for having some of those sensitive conversations online.

Patient/Caregiver Relationship

SB: [W]hen I was looking at the questionnaire [STRESS-MS] and the results, I [wanted] to ask about the issue of the quality of the premorbid relationship. There were 2 things that struck me….First, the link between the mental health of the carer: Poor mental health in the person that is caring for the person with MS [means] that there’s a higher risk of mistreatment. What do you do with that information? Clearly, your patient is the person with MS, but you’re uncovering this contributory factor, the mental health of the person that’s caring [for them] and then what? What would you do in that situation?

"It certainly was something that struck us on the investigator team, how prevalent mental health concerns appeared to be among the caregivers who were abusing or neglecting their person with MS."

EM-B: I don’t think there’s a right answer, but it certainly was something that struck us on the investigator team, how prevalent mental health concerns appeared to be among the caregivers who were abusing or neglecting their person with MS. It may be difficult to deal with the caregiver mental health issue adequately during the same interaction. We could make a note of it and make sure to come back to it. I feel like the 1 thing we can try to do is to have some resources on hand to provide quickly…“[W]e want you as the caregiver to be able to take care of yourself, too, and here are some resources in our community that you might want to check into.” And “[W]ould you like some more information? Here’s a telephone number you could call.” I think we [also] have to make a note to follow up on it, too, because I think [it is] common that…mental health issues…just come up incidentally in a visit with their loved one who has MS, [and] that person may not want to take away time during the visit to…have their own questions answered about how they can take care of their mental health as best they can. I think we just have to keep it on our running list of issues to come back to as soon as we can.

SB: [Second,] again, this idea of the relationship quality before MS and during MS. I’m really fascinated by the data that I’ve collected [on] this idea of carer stress and the way that relationships are impacted by MS. I really feel for the practitioners that I’ve spoken to [who have] to negotiate this idea of what a healthy relationship [is] and how that relationship change[s] now that somebody has this condition. Not only [must they ascertain] how does that relationship change in [the] early days, but how does [it] change as the condition changes, as somebody goes toward a more advanced disease state? One of my participants [said] that she’d done some relationship counseling with a couple—she was a specialist nurse—because they wouldn’t engage with relationship counseling from anybody but her, clearly, because of the relationship they had with her. I sat there listening to this MS nurse talk about [it] and I thought, “My goodness. That’s so much to ask of an HCP to actually unpack what’s going on in a relationship and [to] try to help you work through some of those issues.” I wonder whether that’s a bit too much for somebody to do. [Have] you found yourself making those decisions about what [a] relationship looks like, and how MS is going to change it? Do you ever have those conversations?

EM-B: Yes, sometimes. I’m sure not often enough and not in enough depth. It’s hard to make sure there’s adequate time to address the issue, but sometimes the issue just presents itself. I immediately thought about this [patient] I briefly took care of. It was a very short visit—a woman with MS and her partner. I came into the consultation room to meet her for the first time, and she was holding her face, and she said, “My lip is swollen. My husband’s out in the car, and he is very upset, and he took my face and rammed it on the steering wheel.” I was immediately quite worried, so, [although] I regretted leaving for a moment, I said, “Please don’t go anywhere” and I stepped out to say, please call the police, the crisis team, because…we needed to get some help if this spouse was outside. I was just concerned he might come in and by the time I went back to the room, she had disappeared…and it was too late. We did call the police, but they weren’t able…to find them right away. In situations like that it’s so obvious that you just try to make the best decision you can and help the families, the individual woman in this situation, as best you can, but there’s just no perfect way to address this issue.

SB: That’s a really difficult situation. I think it feeds into so much of what I’m hearing from [other] HCPs, this deep sense of fear about this issue. That’s why I’m privileged to have taken part in this work.…[I]f it does nothing else, it has given people a chance to talk about, to reflect on, the issues, and also [to] reflect on their own practice. I think that’s the value.…It’s now starting to raise awareness of the issue and that can only be a good thing.

Transcript edited for clarity. Part 2 to be published on August 22, 2024.