James talks to Steffy Bechelet from Brainkind about the Too Many to Count report on brain injury following domestic abuse.
If you are interested in getting involved with this important work, or learning more about Brainkind’s efforts, visit brainkind.org or contact Steffy Bechelet, Brainkind Brain Injury and Domestic Abuse Researcher, at stephanie.bechelet@brainkind.org
If you or someone you know is affected by domestic abuse, support is available:
- National Domestic Abuse Helpline: 0808 2000 247 (24/7)
- Men’s Advice Line: 0808 8010327 | mensadviceline.org.uk
| James (0:20) | This podcast contains discussion and material which some listeners might find challenging. We talk about domestic abuse and non-fatal strangulation.
You are listening to another podcast from the HealthTech Research Centre in Brain Injury and I've been speaking to some patients and to some doctors and to some charities and it's one of groups that we're talking to today. So with me is Steffy Bechelet from BrainKind. Hi Steffi. |
| Steffy (0:39) | Hi James, thanks for having me on the podcast. |
| James (0:41) | It's a pleasure. Can you just tell us very briefly what is BrainKind? What do you do? |
| Steffy (0:45) | Absolutely. So at BrainKind we are a neuro-rehabilitation charity, so we work with people who've experienced all different sorts of brain injuries and really support them to thrive post brain injury, whatever that looks like for them.
So we've got hospitals and neuro-rehab centres all over the country and we've also got a brain injury link worker service in many prisons across the UK, so really supporting people with experience of the criminal justice system and brain injury and we also do quite a bit of research which is why I'm here to talk to you today. |
| James (1:16) | Yeah absolutely. So I came across a research project that you produced called Too Many to Count and I will say to listeners it's not an easy read.It's about brain injury from domestic abuse and can you give us the sort of headline stats, the things that made me go “what? Surely not” like that on my screen. |
| Steffy (1:38) | Yeah absolutely and you're completely correct to sort of give people a bit of a heads up around the content. It isn’t easy reading I think even for people who have worked in this space for a long time the statistics are still quite shocking.So what we found from our study looking at brain injury in the context of domestic abuse was that as many as one in two survivors of domestic abuse could be living with a potential brain injury and obviously as people who listen to this podcast and yourself you know you're well aware brain injury can present in lots of different ways which is one of the reasons that this hasn't really been understood fully before and why this research is so important. So one in two people potentially living with a brain injury and many of those people have experienced potential mechanisms for brain injury through domestic abuse particularly physical violence so thinking about hits to the head neck and face and non-fatal strangulation both potential mechanisms and obviously the more that those things happen, and these things seldom happen as a one-off incident, the more that these things happen the higher the risk is that someone could potentially live with a brain injury as a consequence of what they've experienced. So it's hard reading but it's a harsher reality for those who may know they're living with a brain injury but most people don't because of how it presents and because of the lack of education and awareness around this in this particular context and that's you know not anyone's fault that the conversation is still emerging the research is still you know very new particularly here in the UK but that may be the headline is one in two. |
| James (3:09 ) | Yeah so there's a whole load of stuff there that you've kind of brought up. So half the people who victims of this kind of abuse probably have got some sort of brain injury do we have any idea how many people that is you know is it colossal numbers that are in these abusive situations are we talking millions of people in the UK? |
| Steffy (3:30) | Unfortunately the likelihood is that there are many many people and it's impossible to sort of give a completely accurate number because you know the data that we've got in terms of who is impacted by domestic abuse relies on things like the census, it relies on police and crime report and we know because of the very nature of domestic abuse so much of it isn't recorded and sometimes it isn't recorded accurately so it doesn't necessarily grasp the full picture of what someone's experienced. They say on average one in three women one in seven men may experience domestic abuse in their lifetime and unfortunately there isn't a lot of data for transgender and non-binary individuals. We know that people who are already disabled are at a higher risk of potentially experiencing domestic abuse so there's lots of different caveats to that but what this research is telling us is that a lot of people could be living with a brain injury as a result of what they've experienced those brain injury mechanisms that I mentioned before and for lots of people that might present as something that they might consider symptomatic of something else they might already be dealing with or working through and they might not relate it to a potential brain injury or from a head injury that they've experienced which is what makes this really tricky, and it's why it's so important to to try and ask the questions around brain injury to understand what people have experienced. |
| James(4:50) | Start having that conversation so there's lots of first of all you've got to be brave enough to talk about it to somebody and then you've got to recognise the symptoms in yourself and think it might be brain injury and equally the person you report that to has got to realise that well here's somebody who's clearly suffered a trauma maybe it's just that, maybe there's mental health issues going on probably at the same time as any brain injury so it's really difficult to unpick all these different parts isn't it? |
| Steffy (5:22) | Absolutely and we know that people disclose or don't disclose for lots of different reasons and for some people it might be more difficult than others there may be additional barriers in place that stop them from being able to disclose any domestic abuse or the full extent of what they've experienced and I think the language when we talk about domestic abuse and violence in this sense is really important. And this just takes me back to one of the questions that we used in our research study was thinking around the language of non-fatal strangulation. So many people don't resonate the word strangulation with what they've experienced and would use that word to describe what they've lived through and it's really important to ask that in an open question format so thinking about have you ever been held in a way that you felt that you couldn't breathe and if yes do you feel safe to describe what that looked like for you or how have you experienced that because that would help a professional understand actually is there a potential neurological impact here from what someone's experienced, and that's really tricky and you know this is a lesson we learned in terms of language when we were devising our questions, long before we ever went out in the community and started this research, because of working so closely with survivors who were working with Safe Lives who are an incredible organisation that do a lot of work across the UK supporting people who've experienced domestic abuse and the survivors that we spoke with you know unanimously said please just don't say have you been strangled yes or no. Because one people won't resonate with that and also people might feel like that's quite a closed question they don't feel like they can answer that honestly so we really took that on board and I think that's a really important point to take forward when we're talking about any of this really and to think about the language because that's a really tricky series of questions to be asked. So to disclose that is difficult enough to then have to navigate systems and services and I know this is something people have mentioned on your podcast before and in other spaces when we talk about brain injury a lot of the systems and services that we have don't necessarily meet the needs of people who have experienced brain injury or who might be neurodiverse so we have to think differently and really respond to the person in front of us and I know that's something that a lot of people say do but it's trying to make sure that brain injury is part of that lens and you know it's not always something that we can diagnose it's not always something we can put a label to but it's part of that conversation of understanding actually this could be the explanation for some of the symptoms and I think you made a really good point going you know is it trauma is it mental health is it brain injury for so many people particularly have experienced domestic abuse it can be all three |
| James (8:04) | all of those things |
| Steffy 8:05) | Yeah It's sort of like trying to get to the bottom of an impossibly knotted ball of yarn and going where's the start point and and sometimes that's not the most important question to be asking. The question to be asking is “what do you need?” “what do you struggle with?” “how can I support you?” and so that's that's how we're trying to frame some of the conversations that we have in this space moving forward because you know we've got those stats but for us as an organisation as a charity we're really thinking about well what can we do next to contribute to this space how can we support people in the here and now |
| James (8:39) | and I guess that what you need isn't necessarily an easy question to answer because what you need depends on a recognition of what your problems are so do you need counselling and therapy or do you need medication or do you need neuro rehab those things all sit in different silos don't they in our health and social care system so connecting people to the right place isn't easy |
| Steffy (9:07) | no it's not but I think if you have an understanding of what you struggle with you know is that, do you struggle with your memory do you struggle to keep track of appointments dates times. Do you struggle with concentration you know our meetings that you're in could be shorter you know and they sound like really simple quick fixes and it's not that they fix things but actually small accommodations like that whilst navigating services: education employment whatever that environment is for you can make things so much easier and even if you don't put the brain injury label on that but if you have the understanding that what people are experiencing and the symptoms they present with could be the results of a head injury, there could be an undiagnosed brain injury that can make that conversation so much easier to navigate and you know a lot of the symptoms that people present with .. so female survivors potentially of domestic abuse it really mimics trauma and when you're supporting and working with people who you know have already experienced trauma if you don't know to ask that brain injury bit you might be doing lots of great and really important work and putting lots of you know scaffolding and structure in place to support people and help them feel empowered once they've left your service and all of those wonderful things but actually it might just mean that what you're doing might need small tweaks small adjustments that make that process so much better and smoother for someone and |
| James (10:27) | or I guess sort of you know accessing services who specialise in that area you know neuro rehab's a thing because it's a thing it's not just something else right |
| Steffy ( 10:38) | Absolutely |
| James (10:39) | really difficult. and I guess you've got all of that kind of intersectionality as well haven't you you might have someone okay I'm not just someone who's a victim of domestic abuse I'm also a woman I'm also maybe I'm neurodiverse also struggling with mental health and actually you know fitting those round pegs and square holes becomes even harder when we've got all of these things piling up on top of each other |
| Steffy (11:03) | absolutely and one thing that you know we were aware of going into this research but really sort of was, highlighted by what people were telling us about their lived experience, is that mental health and particularly suicidal ideation are incredibly comorbid for people who've experienced a brain injury and we do talk about that but I think recognising that in this space as well is really important because so many people might be accessing counselling or cognitive behavioural therapy they might be on medication and it's not that those aren't the right resources for them or the right um you know interventions but again it's the way that those interventions happen they might need to be slightly different when you then put the brain injury lens on top of that so I think that's something um that we're really really mindful of you know supporting people to have that conversation. And just to go back to what you're saying about you know recognising those symptoms is really really tricky and I think it's moving that conversation away from you have to have a diagnosis to get help and to get support I think just recognising the ways in which you might feel different after experiencing these things and it might not be a brain injury it might be that you have you've had lots of head injuries that haven't resulted in a brain injury and what you're experiencing may well be the presentation of trauma and mental health but it doesn't hurt to factor that into the thinking and when trying to navigate and access support and I think you know just not to put all of the responsibility on the person with the lived experience but it's also about professionals acknowledging that the way that people present to services in particular isn't necessarily because of one thing and I think it's about seeing the grey in the experiences you know quite often we're taught or we're conditioned to see things as black or as white put things in certain boxes put labels on follow a pathway depending on the boxes that have been ticked, but life isn't like that people aren't like that and as you say you know we've got these intersecting identities that impact and influence the way that we see and navigate the world the way the world sees us too and I think one thing we were really proud of of this research is we had a really diverse group of women in terms of ethnicity in terms of religion in terms of ages in terms of the services that they were accessing and no it's not a perfectly representative sample but it's a really helpful indicator that we're seeing a lot of very similar experiences across different groups of people but there were certain pockets that were definitely more magnified for some than others and it's acknowledging that you know the difference is okay difference is to be celebrated and to be championed but it also needs to be understood so that people can get the best help for them when they need it. |
| James (13:45) | Absolutely we need to be aware of that stuff and I guess for this for this group of people the entry point is different so if I have a bang on the head maybe it's not severe maybe I'm a bit concussed and dizzy and three weeks later I go and see my doctor or I present to A&E I'm guessing that a lot of these people their first contact with service is going to be social care rather than doctors or emergency medicine. |
| Steffy (14:10) | It really depends it really depends so a lot of people who experience physical violence particularly in an intimate partner setting might be prohibited from accessing medical care so the alleged perpetrator might stop someone from calling 999 from going to A&E or even booking a GP appointment long after an incident has happened. So that could be the first barrier for most people but people's route of entry in terms of support and recognition of domestic abuse let alone brain injury is really quite varied. Often we do see children and family services involved where there might be children under the age of 18 but not always sometimes it's through schools sometimes it's through employers recognising that actually their employees’ behaviour or their working abilities changed they seem distracted you know maybe something's going on it might be family members, friends or it might be the individual themselves reaching out for support via a helpline or contacting a refuge or a specialist service or even disclosing at the GP, that was actually probably one of the main ways that people sought support actually so outside of contacting a domestic abuse service themselves it was through the GP they were getting that support or that advice and being asked those questions. So it's so individual it would be impossible to say this is the one way that people always get support and you know that support varied depending on where people were the services that were available it's that, you know age old, some services are great and working really really well some are really under capacity and maybe don't pick up things on the first time around people are interacting with them. So it's sort of impossible to say what the first entry point is but we found that a lot of people were using the GP and contacting domestic abuse services directly and very few people that we spoke with had already had a diagnosed brain injury most people weren't even aware that cumulative head injuries whether that's traumatic blows to the head or the brain being deprived of oxygen in some way they weren't aware that that could have a potential health consequence for them beyond you know in the moment and immediate health |
| James (16:19) | yeah and when we have that sort of first contact whether it's through friends or family or employer or all the groups you described, they're almost certainly not oh i think there might be a brain injury that's not the first conversation right and in some ways it's not the most important conversation to have first but it does need to happen quite early on doesn't it we know from all sorts of brain injury work that the sooner we get people the support and rehabilitation services they need for brain injury the much better the outcome will be |
| Steffy (16:49) | yeah absolutely and that's really tricky particularly because straight after an incident, you know, it might not be safe for someone to leave for someone to reach out for help and even if they do have a medical health based intervention particularly you know like a paramedic coming out to their home if that's where something's happened there's no guarantee that people will be able to articulate everything that's happened to them you know in that that sort of heat of the moment, in that crisis, and that immediate trauma aftermath where there still might be the alleged perpetrator present you know that's incredibly difficult to navigate and you know in an ideal world well one domestic abuse would not exist but if if there's a world where it still exists obviously we would want people to get the most timely medical care that they can. But we fully acknowledge that's really tricky and actually probably isn't a lot of first responders first questions it probably isn't the first question that family and friends might ask or first comment that people might make and you know and it's not that it has to be the very first question asked but you're absolutely right the sooner it is asked the better for that individual the sooner if any interventions are needed they can be made but it's really tricky particularly you know if you're thinking of someone who might have had a prolonged exposure to violence so you know this isn't the first incident it might be, i think there was a statistic that came out that on average people experience around 35 to 40 physical incidents of violence before they're able to reach out for help, that's an astronomical number that's really frightening particularly when you think about the high prevalence of injuries to the head neck and face but for people who experience domestic violence so it's really really tricky to to get immediate timely health care responses for people who have had these experiences. So it has to be a question but it's really tricky to navigate when that best time is and i think in all honesty it's so subjective it really depends on the situation the individual personal history that's there and also the professional that's responding in whatever capacity um. You know is it safe is it the most important health intervention that needs to be made in that moment |
| James (19:00) | yeah and i guess we can trust those professionals to make that judgement, they make those kinds of judgments all the time don't they but I suppose what this campaign is about if anything is raising that awareness that that is something to factor into those mental calculations that you're making when you meet somebody or you're confronted with that kind of situation. So what is what is Brainkind pushing us to do what should we all be doing and shouting and stamping our feet about rather than just getting cross about this report about how awful things are in the world for so many , what can we do to try and make things better? |
| Steffy (19:35) | that's a brilliant question and there are multiple things that we can do as individuals but also as communities and as professionals. So first and foremost keep talking about brain injury make sure it's in all those professional conversations, but also if you know if someone is experiencing domestic abuse and you're able to have conversations with them about what might be happening and what that looks like, to have this in the back of your head and to be thinking about this. Um and obviously to raise it as a point of conversation if and when it's safe. As professionals it's something we need to consider in our practise you know whether that's the point of someone entering a service or whether it's once a rapport has been established and we've got trust in the relationship there can we ask those questions around these injuries, regardless of how historic they might be because it's still important to consider that it could be causing a health consequence months if not years after an incident has happened, and then collectively it's thinking about where can we push for policy and legislative change? Where can we make sure that quiet brain injury is mentioned in the same domestic abuse and health and vice versa you know we really need all of that legislation to be working. And it's you know it's great to have things in legislation but it still requires people to be able to understand it and to implement that. So I think also as you know then in between professionals and collectively it's about pushing for training it's about having that professional curiosity to attend brain injury training where you can to ask those questions to think about how it might impact your practise and the way that you support people and what changes you can make. And there's nothing that's necessarily you know perfect quick fix you do one you know questionnaire or one screening tool and suddenly someone has a diagnosis and everything solved. A lot of this is through conversations and I think that's why we like to come back to how can you support that person here and now? What are they struggling with it could be symptomatic the brain injury? Is it safe to have that conversation ? And going from there you know and if people are feeling like this is something that resonates with them that they've experienced do they feel comfortable having a conversation with their GP? You know about what they're struggling with and one of the things that we're doing off the back of our research and thinking about those next steps, because at BrainKind you know we love to do this research but we're about making that real long-lasting positive social change for people who may never access our services but may be living with a brain injury nonetheless, so one of the things that we're working on and you've caught us at a really amazing time. So we're at the middle of this really exciting pilot that we're trialling with domestic abuse services across the country in thinking of a tool that they can use to help them structure conversations that they have with people that are accessing their services. So that's called BrainKind Adapt and it's a play on some training that we offer within the criminal justice system called Ask, Understand, Adapt and I would say that is the main takeaway that I would love for professionals to have is to Ask: have that professional curiosity consider brain injury, Understand; how does that impact that individual and then finally Adapt; how can you amend your service or change the way that you support that individual or advocate for them or alongside them to make that change for their lives for the better. |
| James (22:58) | And let's hope people do that. I really like that you said you know it's about community and professional but it's also about individuals and it's all kind of raising our awareness isn't it and pushing things forward. But listen I am going to put a link to BrainKind and to the Two Mant to Count report on the website underneath this podcast. If people want to know can they just get in touch with BrainKind and questions or are there other places that it's better for them to reach out to? |
| Steffy (23:26) | Absolutely so via the BrainKind website our email address is on there I'm happy for my contact details to be shared if people have got particular questions about the report and I was the lead researcher so I'm probably one of the easiest people to ask about this in terms of getting that content. If you're a professional listening you're thinking gosh I would love for me and my team to know more about this we can do some research dissemination we're always happy to talk about this in whatever way that we can and I think the main thing I really would like people to take away from listening to this is; the prevalence and to have that conversation. Think about one in two domestic abuse survivors one in three women one in seven men in our general population that may well be the person who's listening to this podcast it could be people that they're working with, people that they support people that they love and know are in their lives so just to consider brain injury as a potential part of that ask the question and go from there |
| James (24:21) | and what a lovely way to round up our conversation Steffy. It's difficult to talk about these things but it's so important that we have this conversation and we raise awareness so thank you ever so much for taking the time to chat to me about it today. As I say there'll be links to those relevant reports on the website underneath the podcast so do check it out and make sure that you listen to other episodes in this series from the HealthTech Research Centre in Brain Injury and thanks very much. |
| Steffy (24:47) | Thank you. |
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