Multiple Sclerosis and Abuse, Part 2: A Conversation With Elizabeth Morrison-Banks and Suzanne Britt

This is Part 2 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 1.

A post on X (formerly Twitter) by Britt about her research on health care professionals (HCPs) and their experiences with abuse in MS caught my eye earlier this year. It reminded me of Morrison-Banks' 2023 Herndon Award-winning article detailing a tool to ascertain abuse and neglect in adults with MS, called STRESS-MS. I thought it would be interesting to bring the 2 researchers together for a conversation on the topic.

Elizabeth Morrison-Banks, MD, MS ED

Photo courtesy of UCR Health

Suzanne Britt, MSc, BMedSci, BA, RM

Photo courtesy of LinkedIn

Caregiver & Patient Stress

EM-B: I am fascinated by your work on carer stress…[D]id you find or suspect that there’s a connection with substance use and stress and mental health in caregivers?

SB: I’ve spoken primarily to the professionals and obviously…substance misuse, alcohol misuse comes up quite a lot in those stories. I certainly know from my background in health care…that [it] is a massive indicator for abuse to either escalate or to be happening in the first place. I think that’s because of a multitude of factors. It’s obvious that substance misuse is altering relationships on a very fundamental level—the way that people behave—but [it] also puts stress on lifestyle. We used to talk about in pregnancy—I find this term a bit judgmental, but I’m going to use it anyway—people with chaotic lifestyles. We’d have people come to us, and…we would probably do a safeguarding referral….[When people are] living very chaotic, very disordered lifestyles…[it puts] them in a very vulnerable position; [it puts] women in a very vulnerable position for mistreatment….There might be substances involved. That definitely is something that we need to be aware of as professionals, [and] not in a victim-blaming way. This is my worry: you have, potentially for argument’s [sake], a woman living with a long-term [condition] that might put [her] under stress, in terms of fatigue or hidden disabilities. Then [she] comes into contact with services because [she’s] a mother. There’s a judgment element there, you know, “Are you fit to be a mother?” As professionals, we need to really explore issues about somebody living with a long-term condition: How we support them to live with that condition and without fear of abuse and harm? I think it’s very, very complex, even at earlier stages.

EM-B: Certainly makes sense to me, such important issues for us all to understand better.

SB: And it’s social determinants of health, as well.…You have a condition that [is] a biomedical condition. We can diagnose it. We can say these are the biomedical markers, and [this is how] that’s going to affect your biological health. But then let’s look at the other things that contribute to health, like, do you have access to health care? Do you have access to [financial support]? Do you have access to exercise and…good nutrition, all of those things.…As an MS community, when I go to the conferences, they’re talking about these as useful for improving health on a biological level for the person that’s living with MS, but I also think it’s on a social level as well. That’s why abuse is so important because it has such a fundamental effect on people’s brain health, people’s physical health, children’s physical health, [and] children’s brain health over the long term. [For] somebody [who is] living with abuse for years and years and then enter[s] an advanced stage of disability as they get older, that abuse is probably going to get worse and have even more implications for their long-term health.

"Even if they do have to provide this high level of care, we give them as many tools as possible to deal with the effect on themselves and on the person they are taking care of?"

EM-B: In our work [on] the STRESS-MS scale,…you’re absolutely right that people and relationships change over time, and I think we need a more longitudinal view.…The biggest risk factor we found was when the informal caregiver needed to spend 20 hours a week or more providing care for the person with MS.…It seems like such a huge amount of time in the life of someone who also has to take care of children [or] has to work [or has] all kinds of other responsibilities.…I’m sure we don’t fully understand [what is] required [when a] person serves as an unpaid caregiver for 20 hours a week on top of everything else in their lives. I don’t think we have good answers on what to do because it’s just a fact of life that some families are in this situation, but how can we help people so that, even if they do have to provide this high level of care, we give them as many tools as possible to deal with the effect on themselves and on the person they are taking care of?

Hard Conversations

SB: I think sometimes [when we are] having honest conversations about that, that’s where it can become difficult [in general] as a society because it can be very stigmatizing to feel that you are not looking after somebody in the way that you would like to. I think that’s why it’s hard for professionals sometimes, because they have to negotiate those decisions. What is this? Is this a trend? What level are we at here? It’s so stigmatizing, and comes with a whole level of judgment and bias. Part of the work that needs to happen across the board, not just in MS care, about the issue [of abuse and neglect] is [we need to] be able to have open and honest conversations.…Are there any points [where] we can intervene on the journey [to prevent it from] becoming worse? What preventative work can we do? We focus a lot of our work on finding out and getting people to disclose, but actually, at the point of disclosure, there’s probably been abuse in the past. At what point can we have those [preventative] conversations? It’s about, as a society, being more open to addressing it at an earlier point, so that it becomes something that we talk about a lot more, including [with] the people who feel that they are at risk of mistreating somebody.

SB: I think people genuinely worry about how that’s going to affect engagement with care, how it will affect the credibility of the HCP. All of those things come very strongly to mind. At the end of the day, social services can say, “Yes, we’ll step in. We have a care plan,” etc, but oftentimes those care plans are quite peripheral, and you’re still the HCP giving the 1-to-1 care.… Thinking about the tool [STRESS-MS], this idea of using it at different stages is interesting because it would show you that possible change in terms of how that carer’s stress might be changing. [It] would say to people, “This is an issue that we are aware of, and we’re open to talking about it. It’s something that we know happens, and it’s something that you know is part of the conversation that we can have with you if you want to have it with us.”

EM-B: Exactly, exactly. It makes me think about the prevalence of abuse and neglect of people with MS and, with the STRESS-MS scale, once we had done our best to validate this tool and make it as short as we could so it was as easy as possible to administer, we used it for a survey of people with MS through the NARCOMS database, the North American Research Committee on Multiple Sclerosis. The thing that struck us as soon as we started to get the data back from this US nationwide survey was that it appeared as though about 50% of the people who agreed to be interviewed, the dyads of [the] person living with advanced MS and [their] caregiver, about 50% of them indicated that there was some level of abuse and neglect, most often psychological abuse, but also financial, physical, [and] sexual [abuse at] lower percentages. We expected mistreatment to be prevalent, but this level of prevalence can seem overwhelming because then we’re talking about not just a small subset of the visits. When we’re having a busy day taking care of a full clinic of patients and their families, how often are we missing these issues that are under the surface? [Some of] the patients we take care of day-to-day in our clinical practices don’t have high levels of disability, so maybe they’re less vulnerable, but we don’t know for sure how vulnerable they are. And as you pointed out, Ms Britt, certainly people with MS don’t need to have a high level of disability or much disability at all to experience domestic abuse.

Table from the original IJMSC article on STRESS-MS. Used with publisher permission.

Whose Job Is It?

IJMSC: Can we circle back a little bit? One thing that I’ve been thinking about as you’ve been talking is: Whose job is it? Ms Britt, have you had some conversations about that because you covered the spectrum of people involved in care, in neurology practice: physical therapists, occupational therapists (OTs), nurses?

SB: I think it’s difficult because, when you do a piece of research, the people who come to talk to you are the people who want to talk to you about the issue. I can say that I’ve had less interest from neurologists than I have from MS nurses and specialist nurses.…One of the things that I’ve heard quite a lot in my interviews is that it’s everybody’s business....In the UK, while we have a national health service, each hospital is what we call a foundation trust, so they have their own sets of policies.…There are a couple of trusts where they have this [practice] of routine questioning, not just for people with MS, but across all areas of the hospital, so every patient that comes into hospital has a sort of a basic safety screen at some point, preferably in the first consultation.…What they found is that [this practice] has gotten rid of [the] idea of: Whose role is it to ask? Because everybody has to ask.…They’re identifying fewer cases from more sources, which means that the MS nurses aren’t identifying as many cases, but speech and language therapists are identifying cases, and the neurologists are identifying cases….

In my research, I’ve found [that] because I’m not talking to people who are questioning on a regular basis, [it has] tended to be more the rehab professionals, the physios, the OTs, who—coming back to an earlier point about time—feel they have time and perhaps are doing more of a sort of psychosocial assessment, rather than a medical assessment. The nurses seem to feel that it’s a strong point, that [rehab professionals] can delve [into] and dig a little bit deeper, whereas frequently, what I’ve heard from the neurologist is [that they] have a very short window of time.…[They] have to review scans, talk about issues of treatment, and that then, if [they] had a worry, [they] might refer through to the MS nurse or the OT or the psychologist for a more detailed conversation. It comes back to this idea of people making decisions about clinical priorities, and then deciding, is that in their remit?

EM-B: Even if the neurologists can’t always be the ones to initiate these conversations, at least they are able to partner with the other practitioners.…At least if everyone else on the team is aware…[that] this is a potential problem, then we do need to work together as a team and follow up. Maybe that’s easier to do if it’s a subset of the patients.…

SB: There’s a lot of support for practitioners in that multidisciplinary approach. It’s not feeling that you’re isolated with an issue. [It’s the feeling] that you have a team, that you can have those informal conversations about somebody and [also] more formal conversations [with a team member].…The practitioners that I’ve spoken to get a lot of comfort, if you like, from being able to have those conversations with other people in a supportive environment [where] people are able to raise their concerns and not have them diminished. They’re able to talk through their worries about somebody because [different HCPs] see different sides of people. An occupational therapist going in may be sitting with somebody on the toilet and working out what their mobility is getting on and off the toilet. And when you’ve sat with somebody on the toilet for 20 minutes, you can have conversations about other things, can’t you? You’ve already broken down some of those intimate, sensitive barriers by being in somebody’s intimate space. It might then be easier for them to have conversations about [sensitive subjects] than if you’re in a clinic room or you’re on a Zoom call with somebody [when their] barriers are very much up.

EM-B: Yes, and all the more reason, then, to listen, to be attuned to what the [health professionals] who come to the home are seeing. If you have a physical therapist visiting the home, or a visiting nurse or whomever it is, just pay attention to what that person has to say after interacting with the person with MS.

SB: One of the things that somebody said to me is, “Have you spoken to the [home health professionals]?” I haven’t spoken to the people coming in from care agencies as paid carers. There’s some work to do there in the future, thinking about how they may see things that perhaps [in-office] professionals don’t see because they’re doing more intimate tasks with somebody.

EM-B: That’s such an important topic. When we first began the work that we’ve been talking about, very early on, we had started some, I felt, very promising conversations with the leadership of a skilled nursing facility that had a special interest in taking care of younger adults with disabilities. At first, the individuals we spoke with there and the leadership structure had expressed a lot of interest.…But when it came down to actually starting the work, we started to get resistance.…It seemed like a missed opportunity because this facility had a particularly high level of residents who had MS, and maybe we can circle back again. But it’s tricky to get professionals to buy into this because there’s the stigma. It is stigmatizing.

SB: In some ways, it’s about presenting it as a way of identifying something that needs support.… Sometimes it’s about creating links between [HCPs] and other agencies so that [HCPs] don’t feel quite as isolated [when they] don’t really know what to do with the information they’ve got.…[In the UK] we have something called “independent domestic violence advocates.” They work really closely with people who are living with abuse. They [are] sort of that [intermediate] step between the established institutions that might be involved—like justice, health, social care—and the person. They can work with somebody and the perpetrator as well to really help them negotiate all of the institutions that might be involved. So why recreate the wheel when something like that exists now? What we need is the interface between the HCP and those services to be smoother. I think that would give HCPs that sense of confidence: “If I do identify an issue, then there is a route for that person to get support, [either] to stay in the relationship, [or to] eventually leave the relationship, [or to] find respite.” I think the important thing is that [HCPs] are supported to make those connections.

EM-B: I was pleased to hear that the local police [have] a domestic violence expert, [someone who can] interact with the perpetrator directly and also the person undergoing abuse or neglect, but you know that’s more about identification and, hopefully, prevention, [and] not so much [about] the difficult set of issues [regarding] what to do when the issue is identified. I’ve talked with more than 1 person with MS who has said, “Well, yes, you’re right. My caregiver does neglect me. I know [it would] be better if my caregiver didn’t leave me lying on the floor or didn’t say ‘I’m mad at you. I’m not going to take you to the toilet, or I’m busy, I can’t, I don’t have time to do that.’” It’s heartbreaking to have this conversation and to say, “We want to get you some help,” and to have the person say, “I know it’s not an ideal relationship, but I am terrified [that you’ll] do something that takes my caregiver away. What am I going to do? Can you give me a new caregiver?”…So that’s a tricky ethical situation, too, because we’re mandated to report neglect, and maybe that’s what we have to do….I think we can perhaps all understand that feeling that they don’t want to lose the good parts of what they have. I don’t know the answer to that one.

SB: I think you’re absolutely spot on. It’s so complex, and sometimes we make moral judgments, don’t we? Because of the system we live in, we make those judgments about what’s acceptable and what’s not acceptable. And then sometimes our statutory systems, our legal systems, tell us what those judgments are, give us a mandate to report certain things. Sometimes we lose the person in there. We have the systems, and then there’s a person in the middle.…Sometimes the system loses empathy with why that person makes the decisions that they make. How can we support that person to make decisions? If that person makes a decision that we find difficult and complex and we feel that they should have made a different decision, how do we continue to care for them? I think that’s the hard thing, saying, “You’ve made that decision, but I still have to care for you. I still owe you care. I still owe you empathy. I still owe you the compassion that you deserve because you’re living with this condition and you’ve made this decision.” That can be a really difficult place to be in as a professional….

I did some work very recently with a group talking about abuse and how it changes as women get older, in particular [for] women over the age of 60. One of the things that struck me was that abuse changes as women get older. It has a tendency to become more psychological and less physical, but many older women will stay in abusive relationships because they feel that their horizons are shrinking as they get older…and they don’t feel that they have any other option but to stay with it…and then you throw on top of that an advanced disability like MS.…[It’s] no wonder that people may seek help, but the kind of help that we offer might not be the kind of help that they actually want.

"How interesting it would be to have a multi- or even binational study, despite the differences in the health systems. What common ground could we find? [What] might we be able to learn in a more systematic way from the intersections?"

EM-B: Yes, and if they have the same caregiver, over time that caregiver is aging too, and situations are changing and [they are a] lot less equipped to provide care [as they had] decades earlier. It’s all those intersections; it’s not a straightforward trajectory.

One thing that occurred to me, listening to you talk about the work you’re doing, [is] how interesting and helpful it would be to partner with researchers like you and your colleagues. It would be interesting to see, if we take off our lens of research involving our patients and families living in the United States, how interesting it would be to have a multi- or even binational study, despite the differences in the health systems. What common ground could we find? [What] might we be able to learn in a more systematic way from the intersections?

SB: I think that would be really interesting work to do. I know there’s some work going on in Australia around this topic.

If I had a wish list, I think it would be great to do something in the UK about prevalence. I love the work that we’re doing because it’s qualitative and it gives me the chance to sit down and talk. You can get to the nitty-gritty of what people are thinking and feeling, but I still think there’s space for some studies around prevalence in the UK. And I also think it would be great, because the health care systems are different, very different, and therefore the scope of practice is different, but there are so many commonalities running through professional practice, whatever system you’re working in. I read, I think it was a study done in Brazil, about responding to gender-based violence.…[I]t was a very, very unstructured system, very ad hoc, and often run by people working in rural settings, women, nurses. But the themes that were coming out were exactly the same kind of things we’ve been talking about today. Who do we refer to? What is long-term support? How…do we support decision-making? [These] things have a commonality. It would be really great to do something that crosses borders and looks for the things that unite us, builds on the things that we can learn from each other. As we’ve seen today, there [will be] pockets of practice that we can all learn from, and we can all take forward and adapt and use in our own settings. To me, that is the whole point of research, linking to what other people are doing, and [saying], “Let’s see where we can go with that.”

Transcript edited for clarity.