Mental Health and Brain Injury

It is a real privilege to be here. This is very much going to be a whistle-stop tour; we have half an hour to talk about an absolutely huge topic, so we are clearly not going to cover everything. As Tamsin said, we will be touching on some very sensitive issues to do with self-harm and suicide. Please look after yourselves, take a moment away from the screen, talk to someone if you are feeling distressed about any of the content you hear today, leave the webinar, or do what you need to do to stay safe. These are important topics, and I think too many times we perhaps shy away, particularly as professionals, from discussing these issues.

Because it is such a huge topic, I am going to focus on one of the most common mental illnesses, which is depression, but I also want to talk briefly about psychosis, which is a rarer mental disorder following brain injury but has a massive impact. Those are the two issues we are going to focus on today, looking at why those issues might occur, briefly discussing treatment, and thinking about barriers to accessing healthcare support. I am also here very much to listen as well as to talk today.

I have a bit of a dodgy accent, as you can tell; sometimes I speak too quickly, so please forgive me for that. Unfortunately, I have had it for over 50-odd years, so it is unlikely to get any better. So, I am teaching my granny to suck eggs here by telling you how common brain injury is. You know it is extremely common; about one and a half million people every year suffer from a traumatic brain injury, and about 20,000 suffer a moderate or severe traumatic brain injury with life-altering, long-term consequences.

What we also know, but hear less about, is that the psychological impact of brain injury is much more common and often has more impact than the physical impact. All mental disorders and all mental illnesses are more common following a brain injury. That includes anxiety, post-traumatic stress disorder, psychosis, sleep disorders, depression, and substance issues. You name it; it is more common following a brain injury. The brain injury does not cure mental illness.

Why do we not hear more about mental illness and brain injury? It is because, really, rehabilitation has traditionally been focused on improving independent living skills following a head injury, and very rightly so, focusing on mobility, speech, and being able to feed ourselves—those survival and independent living skills. But, of course, we know the brain does more than that, and so often the cognitive, emotional, and behavioral impact was sidelined, neglected, or given less priority. Whenever something is given less priority, that does not just mean in terms of thinking, it means in terms of resources as well. Thankfully, over the past decade or so, things have significantly improved in terms of a more holistic approach to neuro-rehabilitation, but we still have a long way to go, and as we will see today, those barriers and that lack of focus and resources can still exist.

Let’s talk a bit about depression. It is one of the more common mental illnesses; it affects about 15% of people in the developing world, with peaks in the 20s and 30s and again in the 50s and 60s. There is a very clear definition of depression: it is characterized by an absence of positive affect, which means a loss of interest and enjoyment in ordinary things and experiences, having a low mood, and a range of emotional, cognitive, physical, and behavioral symptoms. To have a formal diagnosis of depression, that has to be present almost all of the time, every day, for at least two weeks. It is a quite distinct diagnosis. It can be classified as mild, moderate, or severe, it can be atypical, and it can obviously also be associated with suicidal thinking and intention.

It is different from dysthymia, which is a chronic low mood—less severe symptoms but lasting longer, often months or years. There are also adjustment reactions, which are changes in mood following a change in your circumstances. We saw this in the Barbie movie for a little bit of lightness: Barbie lost interest in herself and her self-care, became low in mood, and became very tearful as a result of the introduction of the patriarchy, and she was immediately cured whenever the matriarchy was re-established. If only life were that simple.

These are examples of not just the psychological effects of depression but also the physical and social impacts. Often, the physical and social are neglected whenever we are thinking about depression; we just think about low mood. But things like the effect on pain, appetite, even our bowels can be affected by depression, as well as our sex drives, menstrual cycles, and the avoidance and withdrawal from social interactions.

Depression is a common mental illness, but after a brain injury, it is even more common. Ten weeks following a brain injury, 56% of people could be diagnosed with depression, and in the first year following a moderate to severe traumatic brain injury, 57% could be diagnosed with a depressive disorder. Whenever you think back to those symptoms, just think about how major an impact that will have on someone's recovery journey.

We also know that depression can present atypically or with symptom masking following a traumatic brain injury. Some unusual presentations include an increase in irritability—not getting along with others, sometimes to the point of being really agitated. It can present with avoidance behaviors, such as not attending appointments, keeping yourself locked away or isolated, or not wanting to go out. It can look like fatigue, and we know that fatigue is hugely common after a traumatic brain injury, particularly in the early days; this can often be misdiagnosed as depression. Also, health anxieties can develop, where someone becomes increasingly anxious about their health. That could be seen as normal behavior following such a traumatic event, with frequent attendances at the GP, but that person might be labeled as 'difficult' when it is actually their mood and resulting anxiety and depression.

We also see sometimes that one of the indications that somebody is suffering from depression after a brain injury is that their cognitive function is not as good as would be anticipated by the nature of the injury. For example, maybe someone is presenting with more memory difficulties than they should have for the injury they sustained, and that may well be an indication of depression. All the therapies in the world that are thrown at that person for cognitive rehabilitation may not be successful if the depression is not treated or asked about.

When we were setting up this webinar, a patient of mine—I will call him a patient because I have given him treatment—wanted to come along and speak, but unfortunately, he is unwell. However, he has allowed me to share his story, provided I do not share his name, so we are calling him Sam. Sam had a traumatic brain injury when he was 11 as a result of a road traffic accident. He spent a year in and out of hospital recovering, missing lots of school. He eventually returned to school and really struggled; he fell behind, was bullied, and started to skip school. He hooked up with a local gang who gave him drugs, but they also gave him a peer group; he felt he belonged.

He started to self-harm at the age of 14 by cutting, took more drugs, and started to commit minor offenses. His self-harm escalated with overdoses, ligaturing, and repeated cutting. He was repeatedly arrested by the police for threatening to throw himself off bridges or running in front of traffic. He had multiple assessments by crisis mental health teams and was diagnosed with a personality disorder at the age of 19. He was offered six psychology sessions—that seems to be the standard—but he missed the appointments because he lost the letters, and he was then labeled as 'not engaging.' Not once in his records during this time was his brain injury mentioned; not a single time. This cycle continued until the age of 25, when he committed a serious offense and received a prison sentence. This time, he struggled in prison, and he was referred to a prison psychiatrist who took a history and listened to him. That is the key: they listened.

He was transferred from prison to hospital, had a neuropsychological assessment, and was offered treatment adjusted to his cognitive needs. He stopped self-harming completely, and although he still has ups and downs with his emotions, he now has an armory of coping strategies for his adult life. The biggest regret is that he was not listened to sooner and did not have those interventions for his mental health sooner. He wrote a poem, and it is currently hanging in our trust headquarters along with his artwork:

I’ve seen brain injury in reality,
It’s like battling with the devil of insanity,
Depression, self-harm, and several personalities,
Low self-esteem, it’s a tragedy.
Bad days led to sad days,
Sad days led to self-harm,
People come, people go,
Don’t do drugs, it’s not the way to cope.
Always be kind and stay positive,
Confidence is key to progression.
My journey has just begun,
Hospital’s given me the ammunition,
To complete my mission,
To be in the arms of my family again.

I think Sam’s case highlighted so many of the barriers to accessing appropriate mental health care. One study showed that 60% of people had not been asked at all about their mental health in the first year following a traumatic brain injury. There is often a lack of specialist services and training for healthcare professionals. Many people with a brain injury face exclusion criteria, or services do not believe in 'organic' causes of mental illness. Then, as in Sam's case, there is being discharged from services due to not attending. We know that can happen for multiple reasons, such as the health service not making it easy to get appointments, but people with a head injury can also face bias, discrimination, and negative attitudes.

I have come across the feeling of 'I should be glad to be alive' time and time again. People have tremendous guilt because they feel they should be focused on rehab and trying to please their family and friends—'being strong'—but inside they feel really sad. Because of the shame and guilt they feel, they struggle to tell their family, and that creates a barrier to accessing help. I have heard from people not wanting to disappoint physiotherapists, so they just slide away from their appointments, which impacts their physical recovery too.

I want to mention suicide because this is not just about feeling a bit down. This is a physical, psychological, and social series of symptoms that can have very serious consequences. Large population studies have confirmed that if you have a brain injury, you are two to three times more likely to complete suicide. Those are shocking statistics. Other studies have shown that about a quarter of people with a brain injury have thought about suicide in the first year, and that is even higher for adolescents. Unlike some other health conditions, the risk is lifelong. If you are given a cancer diagnosis, your risk of suicide is highest in the first few weeks and months, but with a brain injury, it is a lifelong risk.

We know that the risk is higher if someone has early mood symptoms following a brain injury, a past history of mental illness, or past suicide attempts. We also know the more severe the brain injury, the higher the risk, but we are finding out more about the impact of repeated mild or moderate traumatic brain injuries. We are thinking about particularly vulnerable groups, such as people who have experienced multiple episodes of intimate partner violence or domestic violence, children who have suffered physical or emotional neglect, and people in contact sports. We have seen suicides among elite sportspeople who have had repeated trauma and the effect that has on their mood. There is also the massive area of brain damage due to substance and alcohol misuse.

Why does this happen? It is complicated, and it should be, because the brain is a complicated thing and we are complicated people. It is not just about where the brain injury was or the type of damage; it is about your previous mental health, your previous brain health, and your previous experiences. Research is currently looking at predicting depression depending on the nature and location of the brain injury, with the aim of identifying people at risk and starting treatment prophylactically.

I am just going to move on briefly to talk about psychosis. It is a collection of symptoms that alter a person's perception of reality, including delusional beliefs, thought interference, and hallucinations. It is relatively rare following a brain injury—about 1%—but it can go up to 10%, and the risk increases over time. There can be a latent effect, meaning you can develop a psychotic illness up to 10 or 20 years following the injury. We know there is an association with epilepsy, particularly temporal lobe epilepsy.

If you develop a psychotic illness following a brain injury, this is called an organic delusional disorder. Symptoms can include persecutory delusions, hallucinations, and misidentifying people, which is particularly problematic for carers. We know that if someone has a history of a severe mental illness like schizophrenia, they are more likely to have a brain injury. There is also an association between early-onset psychosis and having had a brain injury in younger life. This is important because it impacts treatment; we need to understand why someone might not be responding to conventional treatments. It may be because no one has asked about or taken account of a brain injury to make necessary adaptations.

Another patient story is 'M'. M had a cerebral abscess; he had an ear infection that spread into his temporal lobe when he was 20. He had surgery, following which he developed epilepsy, memory difficulties, and behavior changes. He had hallucinations and paranoid delusions. His English was not his first language, which led to barriers in accessing care, and he led a vagrant lifestyle. He had his epilepsy partially treated because he did not like taking the medication, but his psychosis was not treated because no one asked him about his mental health. He started to use drugs to try to make the voices go away, which made him more paranoid, and he committed a serious offense. M had no insight into the risks of his behavior and required the Mental Health Act to receive treatment for his psychosis, epilepsy, and memory problems. He is now symptom-free and is learning new independent living skills.

What are we going to do now? If you take away anything at all from today’s talk, it is: please ask about mental health. You do not ask, you do not know. And if you have suffered from a traumatic brain injury, please tell and talk about your mental health. It is not a rare thing; it is a common symptom of brain injury. Talking about this should not be stigmatized; it should be a normal part of the inquiry into someone's health.

Often people ask me, 'If I ask about suicidal thoughts, will that make the person think about suicide?' Actually, acknowledging and talking about suicide may in fact reduce the likelihood of completed suicide and can lead to improvements in mental health. Ask the carer, too; get another person's view on things. There is a therapeutic impact in having the conversation and the sense of relief that comes from being in a safe space. Use screening tools, do a risk assessment, and have a crisis plan.

Inform and educate. Name it. Don't we all feel better when we know what is going on with us? Getting a diagnosis can give a sense of relief—'I am not going crazy, I am not mad, this is a symptom of what has happened to my brain.' Give information and signpost to resources. Headway, BrainKind, and others have fantastic resources.

Collaborate. If you are a healthcare professional, do not just give someone information; talk them through it. Understand that this is a complex issue. If you just treat the biological without looking at the psychological and social, you are never going to get the functional outcomes you are hoping for. If someone has psychological therapies but is still living with daily pain or cannot afford to pay their rent, they are not going to get an optimal result.

Treatment is the same. There is no magical thing that you need to do for treating depression in somebody with a brain injury, but you must be aware that treatment has to be adapted. Psychological therapies, individual rather than group therapies, are better. Incorporate cognitive rehabilitation strategies, such as ensuring the person understands the strategies and has resources to support them.

Meaningful activity: I cannot emphasize that enough. It is so important to have a reason to get up in the morning, something to look forward to, and something you get pleasure from. That includes physical activity, mind activity, and creative arts.

Medication: I am a doctor, so I am going to talk about it, but it does need to be adapted. We need to be aware of seizure thresholds and the increased likelihood of side effects.

What is the goal? Work collaboratively to think about desired outcomes. Sometimes, depending on the type of brain injury, that may not be an emotional outcome. It might be a functional outcome, like being better able to prepare a meal or go to employment, even if the feeling of happiness is slow to come.

If you are coming across barriers, let us know. Let Headway know, or the UK Acquired Brain Injury Forum, or the Neurological Alliance. There are fantastic advocacy services that want to hear your feedback. We know there is a long way to go to integrate mental health with physical healthcare, but the more information we have about these barriers, the better armed we can go to lobby parliamentarians who hold the purse strings.

Dolly Parton is my guru, and I love this quote: 'We can't direct the wind, but we can adjust the sails.' You have had a life-altering event; what can we do to change the direction of that recovery and steer things in a more positive direction? Thank you very much for listening.