As Frances Ryan for the Guardian writes, the crowd’s support for Lewis Capaldi during a performance affected by tics was “the sort of display of communal spirit that didn’t just feel like Glastonbury at its best, but humankind generally”.
Her article celebrates the response of festival-goers, who cheered on the singer and sang when he could not, as his vocal performance was increasingly impacted by Tourette’s (which includes involuntary movements and tics affecting his breathing).
However, Ryan’s article also highlights the rarity of visible disability – particularly on stages as prestigious and global as Glastonbury. On this unusual occasion, a person experiencing communication barriers was publicly celebrated and supported – not out of pity, but through acceptance. The crowd acknowledged Capaldi’s difficulties and worked collaboratively and responsively with him, to triumphantly finish the set. This wasn’t about bleeding hearts or saviour complexes. This was about wanting Capaldi there, wanting to be part of a moment with him, and working towards a successful communication exchange in an act of mass collaboration.
Here are the voices of some people with Tourette’s in response to the performance:
The disparity between this one, magic moment and society’s typical responses to disability (including wrong-footed, well-meaning ones) is stark. In Capaldi’s statement following the festival, he said he was “annoyed” with himself, perhaps a reflection of the shame some people with Tourette’s and many others are made to feel, when they are unable to mask their differences – an often exhausting task, upon which their equal treatment can feel dependent.
Making communication work
Capaldi’s performance highlighted that communication is a two-way (or in this case a 100,001 way) exchange, which both sides of the ‘conversation’ have a duty to make work. In many ways, the Glastonbury set illustrates best practice when working with a court user (or communicating with anyone, in any context) who has a communication difference or difficulty.
Communication is an exchange, which all participants have a duty to facilitate as effectively as possible. Part of successful exchanges involves understanding each participants’ communication strengths and needs and implementing adaptations to overcome any barriers. This doesn’t mean frustratedly ending an exchange because it isn’t working, or assuming that what somebody is trying to communicate isn’t of value.
Successful communication can look different for everyone, but collaborative, person-centred approaches are often the key. This is how the crowd approached their exchange with Capaldi. Listening to what he had to say about the difficulties he was experiencing, responding to his cues and providing the support required to facilitate a successful interaction.
Tourette’s & communication in legal proceedings
In a recent Communicourt blog for Tourette’s Action Week, we explored the condition (which affects an estimated 1% of people in the UK) and shared tips and strategies for legal professionals working with a client who has Tourette’s.
Many of these strategies focused on raising communication partners’ awareness and understanding (for example, addressing a jury to explain a defendant’s Tourette’s presentation and that this must not influence their verdict) and working collaboratively with the court user to implement effective communication strategies (for example, by asking what helps them).
Concepts like “understanding” and “awareness” may sound fluffy, but they can and should have concrete outcomes. For example, understanding that some people prefer to suppress tics (which can result in fatigue and impair attention) means that courts can take measures like implementing more frequent breaks, providing written summaries (in case evidence is missed through loss of attention) or working to ensure the individual feels more comfortable to tic freely during proceedings.
Meanwhile, being aware that anxiety and stress can exacerbate Tourette’s symptoms can prompt the court to explore special measures to help manage these feelings, like permitting remote attendance or the use of a screen during the court user’s evidence, which can assist the individual to give their best, clearest and most reliable evidence.
However, when we start to consider a list of possible ‘strategies’, it’s easy to lose sight of the person at the centre of these measures. Adaptations must be made on a person-by-person basis, and informed by the individual they are intended to assist.
For example, while some people may prefer for their tics to be ignored in conversation, others will feel more comfortable with an alternative approach. While some people will feel less anxious engaging in proceedings remotely, for others, video calls can be particularly anxiety inducing. Instead of following a ‘tick-list’ when communicating with a person who has a communication difference or difficulty, actively seeking and integrating individual communication preferences is essential.
These principles don’t just apply when communicating with a person who has Tourette’s Syndrome, or when cheering on your favourite musician on the Pyramid Stage. They should be at the heart of every interaction. When we take a flexible, responsive, informed and person-centred approach to communication, we help ensure everyone can be part of the conversation.
Learn more about court communication from experienced court intermediaries on The Access Brief. A growing library of free resources developed for legal professionals working with clients who have communication needs.
Imagine yourself in a police interview. The room is divided by a one-way mirror. One side is a space where the interview is conducted. On the other side, officers make observations and have discussions through a soundproof one-way mirror. The officers can see and hear both sides, but the individuals in the interview can only see and hear what is in their room. The room with the officers making observations is the closest representation of the intermediary room on CVP.
What is a CVP intermediary room?
The intermediary room, also known as the interpreter room, was an HMCTS development of the Cloud Video Platform (CVP) to improve multilingual services during remote hearings, particularly during the COVID-19 pandemic.
According to the CVP guidance, there are two ways to ‘interpret’ spoken language in a court hearing; consecutive interpretation and simultaneous interpretation.
The purpose of CVP is to mimic what occurs in a face-to-face hearing in a remote setting. The benefit of using the intermediary room, is that the court will always be able to see the court user and the intermediary or interpreter and vice versa. However, the court will not be able to hear the intermediary or interpreter giving real-time explanations or simplifications, meaning the hearing can continue without having to pause.
Prior to the pandemic, all hearings were fully attended in person and remote court hearings were a concept unknown to a lot of people. It was also unheard of for interpreters to assist remotely. There were some occasions where intermediaries could assist remotely, i.e., assisting with evidence via video-link from a witness suite, however, these occasions were extremely rare. Back then, intermediaries may have recommended that court users attend remotely, for example, to assist a court user with severe anxiety. However, judges were often reluctant to agree to this and the intermediary would have to thoroughly explain the need for this measure and the potential benefits to the court user’s participation.
The technology used to facilitate assisting remotely before the pandemic was not as advanced and accessible as it is now. Previously, a designated TV, laptop or computer in the witness suite was a common option. However, today, court attendees can usually join using any device, from anywhere in the world, provided they have the correct CVP link and PIN to access the meeting.
How are intermediary rooms set up?
The organiser, normally the court clerk, will set the link up. They will host two linked CVP ‘rooms’.
What happens if there is no intermediary room?
The intermediary room can only be facilitated on CVP. If the hearing is on Microsoft Teams, there is not an option for an intermediary room.
The intermediary can request the organiser (the clerk) to create an intermediary room when they join a hearing and find out that an intermediary room has not been created. The organiser will then create a second room and put the intermediary and the court user in that room.
Why are intermediary rooms used?
Commonly, the intermediary room is arranged by the court without any discussion with the intermediary. From my experience, the use of the intermediary room is often necessitated by having the assistance of an interpreter. However, another key reason why intermediary rooms were used was due to COVID-19 restrictions.
CVP is still used in court proceedings today, for example, when barristers request to attend remotely due to a conflicting matter, or when professional witnesses are required to give evidence. CVP can also be used when people in custody are required to attend court hearings or partake in intermediary assessments. However, it is becoming less common for intermediary rooms to be used to facilitate work with a court user.
The positives
The main (and most significant) positive is being able to provide live, real-time explanations without having to use a different device and without disrupting the flow of the hearing. It is also useful when there are natural pauses during court, as it means that the court user can ask questions and make comments in real-time. However, this system, whilst theoretically a good solution, is not without its flaws…
The downsides
Ironically, in my experience, communicating using the intermediary room is often difficult. It can be difficult to hear the court user speak and hear the court at the same time. There is no way to adjust the volume in the courtroom, or the separate room, which means that intermediaries can often feel that they are either not hearing the court user, or not hearing the court properly. Due to these difficulties, court users may be put in a position where they have to choose between listening to the hearing or engaging with the simplifications given by their intermediary.
Trying to communicate with the court user in this kind of setting can be overwhelming for them as there can be many communication ‘inputs’ to attend to, without always being able to visualise the faces of the participants.
If court users do not have access to a laptop, they may be required to join the hearing from their mobile phones or be dialled in. If they are joining the hearing from a mobile phone, they may not be able to see and visualise all of the participants as there is limited space on their mobile phone screen. If court users are dialled in, then they would not be able to see any faces at all, as being dialled in is essentially like being on a telephone call. The picture quality of the hearing is also often reduced, and the intermediary and court user appear smaller on the main hearing room screen (due to split screening), which makes it difficult for the people in the main hearing room to see the intermediary and court user in detail.
Technological difficulties can also be a big issue.
Oftentimes, the volume of the main hearing is too loud, meaning that it can be a struggle for the intermediary and court user to effectively communicate. It can be challenging to talk over the conflicting voices in court, which results in difficulty hearing one another. The sound feedback can also be quite bad, which makes communicating harder. So, it can be difficult for intermediaries to provide real-time explanations, as they can only realistically communicate in brief moments, when there is a natural pause in the main hearing room.
All of the participants may not have good and stable Wi-Fi connections, especially if cameras are turned on. Turning the cameras off can improve the internet stability and sound, however, it means that the intermediary cannot see the court user. Therefore, it is harder to interact, and there is no way of ensuring that the court user can hear what is being said or monitor their participation. Turning cameras off would also mean that court users would have no visual reference to determine who is in the courtroom and who is speaking.
The intermediary room is often muted during the hearing, which makes it very difficult for the intermediary to communicate any difficulties or recommendations which arise to the court. Sometimes, it is not clear when the room is muted, and intermediaries can accidentally interrupt the hearing! There is the chat box function, which only the clerk or organiser has sight of, but it can take a while for them to notice any messages. In most cases, intermediaries have to get an email across via the barrister to the judge to make any recommendations or adjustments.
Overall, based on the feedback I received from other intermediaries at Communicourt, there tends to be more negatives than positives to the intermediary room. It should be borne in mind that the intermediary room was created to replicate something virtually that generally worked really well in person. This technology was developed during a time of crisis to improve access for court users who had no choice but to attend hearings remotely. Unfortunately, however, the technology currently available undermines what is theoretically a good idea.
In an ideal world, intermediaries would have:
Adjustable volume settings which the intermediary can operate in the intermediary room.
A selection of notifications that the intermediary can use to communicate with the main hearing room (for example, ‘pause’, ‘break’, ‘intervene’, ‘slow down’, etc).
Make the intermediary room chat box content visible to the main hearing room, to improve communication between the two rooms.
Until these changes are developed and implemented, there are a few tools and strategies intermediaries have at their disposal to help overcome the limitations of the intermediary room:
Confirm with the court first that they are allocated their own room before they start to speak (as they cannot usually see if they are in a separate room).
Make sure that both they and the court user have their cameras on, as the platform is most effectively used that way (they can see, hear, and monitor both attention and emotional regulation more effectively).
Recommend and use a “pause” and “break” sign which the intermediary can hold up. The “pause” sign is to request a short pause while the intermediary gives a simplification or checks understanding/wellbeing of the court user (during which, the main hearing room is quiet so the court user can hear the intermediary). The “break” sign is to request a complete break.
Ensure they have the email address of the clerk or barrister to pass on any messages, in case the clerk takes a while to notice their message in the chat box.
To learn more about the intermediary role, visit our library of free resources, created by intermediaries for legal professionals. The Access Brief is a growing bank of bite-sized guides covering everything from the intermediary role when court users also have an interpreter, to communication tips for clients who have a diagnosis of Traumatic Brain Injury.
Tourette’s affects 1% of the UK’s population, which doesn’t sound like a lot, until you realise that means there are approximately 690,000 people living with Tourette’s. That number only includes people who have been specifically diagnosed with Tourette’s and does not consider those who are undiagnosed or have other disorders with a similar presentation, for example Tic Disorder, autism and attention deficit hyperactivity disorder (ADHD).
In this blog, we’ll be sharing some more information about Tourette’s, tics and how legal professionals can help support the equal participation of a client who has Tourette’s or tics in the courtroom and conference room.
Tourette’s Awareness Month
15th May – 15th June are Tourette’s Awareness Month. This year, Tourette’s Action have chosen the theme #ItsWhatMakesMeTic to destigmatise the condition and to familiarise people with a range of tic presentations. The Tourette’s Action TikTok is full of videos from the organisation’s five ambassadors, who have been sharing their experiences, tics and coping strategies in real time, making the channel a fantastic educational resource for anyone who wants to learn more about Tourette’s.
What is Tourette’s syndrome and how might it affect a client during legal proceedings?
Tourette’s syndrome is a neurological condition that causes you to make involuntary movements and sounds called tics. Tics are fast, repetitive muscle movements that cause sudden body jerks or sounds.
Tics can often be made worse when the individual is going through a period of stress and anxiety, which is highly likely when going through court proceedings.
Below are some common examples of motor and vocial tics:
Motor tics
Vocal tics
Head jerking
Repeating words or phrases
Shrugging shoulders
Clearing throat
Hitting
Singing
Blinking excessively
Humming
Clicking fingers
Grunting
A common misconception is that everyone with Tourette’s shouts out obscenities! Coprolaliais the medical term described as: “The involuntary outburst of obscene words or socially inappropriate and derogatory remarks”. This is actually rather rare and only affects 1 in every 10 people with Tourette syndrome.
Since the COVID 19 pandemic, there has been a significant increase in the number of people (predominantly teenage girls) displaying ‘Tourette’ type behaviour and so the number of people presenting with similar symptoms is at a record high. With Tourette’s becoming increasingly prevalent, it is important for professionals in the legal system to know how to communicate with someone who has Tourette’s, and equally, how to assist those affected to communicate effectively with others.
Tips to assist a client with Tourette’s in legal proceedings
Below are some top tips for assisting a client who presents with Tourette’s or Tourette type behaviour during a legal conference or in a court environment:
Have an open conversation with your client about their Tourette’s
Don’t shy away from it or ignore it. Ask your client if they feel comfortable giving you information about their diagnosis (be mindful that they might not!). This can be an opportunity to find out if certain situations make them ‘tic’ more or if they have any strategies which they find useful in calming their symptoms.
Ensure your client feels comfortable asking for breaks
Tell your client, from the outset, that they can take a break whenever they feel they need one. Knowing they can remove themselves from the situation, in the event their tics become overwhelming, will likely be a comfort to a client with Tourette’s/tic disorder. People with tic disorders also tend to try and suppress their tics. This can be incredibly fatiguing so be mindful your client may require breaks more frequently.
Request a Ground Rules Hearing
This will ensure everyone is aware of the individual’s diagnosis and measures to assist (if your client feels comfortable sharing this information). During the Ground Rules Hearing that everyone within the courtroom has been made aware of the diagnosis (and discuss how the condition will be explained to the jury during a criminal trial), so that people know what to expect and that any motor or vocal tics are not intentional. Suppressing tics can be incredibly fatiguing, so it can be helpful to ensure your client knows everyone is aware, so they don’t have to stifle them. Highlight the particular stress involved in giving evidence and whether your client might have more tics at this stage. This will also be an opportunity to outline strategies that may assist your client. For example:
Asking hearing participants not to respond to any vocal or motor tics.
Allowing emergency breaks (your client could be given permission to hold up a break card, for example). This could be used if your client is experiencing an overwhelming amount of tics and needs to immediately remove themselves from the courtroom. It could be your client is experiencing a tic attack. If this is something your client reports to be an aspect of their condition, it should be raised at the ground rules hearing and discussions should take place regarding what to do in the event of a tic attack taking place.
Scheduling regular breaks in order for your client to have time to recover physically from the fatigue involved in both ticking and suppressing tics. These breaks should be in addition to those usual breaks implemented for recapping and checking your client’s retention of information (if required).
Recommend remote participation
Anxiety is strongly linked to an increase in a person’s tics and therefore remote participation may alleviate some (not all) of this anxiety, enabling the person to participate more effectively. Participating remotely may be particularly helpful during your client’s evidence, as this is commonly the most anxiety-inducing part of the court process. Ultimately, a conversation should be had, to establish the personal preference of your client and what they believe will help them minimize stress and anxiety.
Be patient
Tics may interrupt a person’s speech but be patient, don’t finish their sentences or predict what they are going to say. Give your client time to express their thoughts.
It’s National Epilepsy Week. This year’s theme is “Epilepsy Matters”, which encourages people with epilepsy to share their experiences and the things which matter to them about epilepsy. To mark the occassion, Communicourt intermediary Florence has shared her own experiences of epilepsy, alongside helpful learning and tips for court professionals who may be working with a client who has the condition. At the end of the post, you’ll also find information about how to help someone who is experiencing a tonic-clonic seizure.
Being a “me” with epilepsy
by Florence Roberts-Bowman, Communicourt intermediary
When I was about 8, I woke up in a wheelchair in hospital. I was a bit confused, as the last thing I really knew, I’d been watching Saturday morning programs on our big [cathode ray] tv. I don’t remember being particularly scared, just embarrassed to be wearing my pyjamas in public.
I don’t know to what degree a diagnosis of epilepsy impacted my little 8-year-old self. I knew that we got a new TV. I knew that I often had to close my eyes during films and theatre trips when everything got a bit strobe-y (which is always, annoyingly, during the best bits!). I didn’t have any responsibility for researching or managing my condition because my parents did all of that. And, thankfully, it wasn’t something that was intrinsically worrying for me. I used to enjoy an appointment at Walton Neuro, as it meant time off school, and invariably ended in a trip to the café. Over time, I’ve managed to glean dribs and drabs of information from specialists, understanding that there was a genetic aspect, a mutation. I have a letter somewhere about exactly what frequencies will set me of.
I will admit I’m not the ultimate authority on epilepsy. Firstly, I tend not to be awake or able to look in a mirror during a seizure, so I have no idea what they look like. Secondly, whenever I do engage in literature about epilepsy I get hit with words like ‘death’, ‘mortality’ etc., and that’s not particularly palatable. And I suppose, finally, thinking about what having epilepsy actually means sometimes makes me want to run back to that café and have a coffee and a brownie.
With that said, I thought I’d take some time to engage and explore what epilepsy means to me and other people with the condition, particularly those who we encounter in a court context.
Triggers
As I’ve grown up, I’ve learnt a lot more about what epilepsy is, and I’ve often found that, actually, it is quite difficult to find commonality between experiences. It surprised me to learn that only 3 in 100 people have photosensitive epilepsy (triggered by flashing lights or contrasting patterns – Epilepsy Action, 2022)[1]. Other seizure triggers might include:
Tiredness
Stress
Alcohol and drugs
Menstrual periods
Missing meals
Increased temperature due to illness(Epilepsy Action, 2020)[2].
This is why it is important not to assume that someone with epilepsy will be triggered by flashing lights, and instead seek to understand their individual experiences, where necessary. In a court environment, stress and tiredness are particularly important considerations. It’s essential for court professionals to be cognisant of someone’s presentation and to minimise possible triggers.
Important questions to ask to gain this information could be:
A starting point when working with someone with epilepsy is to check in with them at the beginning of and throughout the day, in order to monitor whether they have slept or are particularly anxious or stressed. Some questions like ‘did you sleep well?’ or ‘what did you have for breakfast?’ are very innocuous but can offer helpful insight. If long days in court, early rises, or travel are an issue, then shorter court days could be arranged.
When working with someone with epilepsy, it is also important to have a mechanism for breaks to be taken flexibly or on a more urgent basis. This may be to clear the court if someone is having a seizure or if the person is experiencing a sign that a seizure is approaching (for example someone may experience visual hallucinations before certain seizure types). As these warning signs (or certain seizure types) may not always be immediately obvious, it can be helpful to have someone close at hand to monitor presentation or provide the court user with a mechanism to request a break themselves (e.g., holding up a card or using a signal).
Having said that, I recently asked a janitor a Leeds Crown Court to turn off the flickering light in the toilets, so sometimes there is a straightforward answer!
Seizure types
When I had my first seizure it was the notorious ‘thrashing around on the floor’ type. The name for this is tonic-clonic or, alternatively, ‘grand mal’. I prefer the name grand mal because that would mean ‘big bad’ and that seems a fair description. It was only later that I was recognised as experiencing absence seizures (petit mal), which is where I forget where I am for a brief minute and flicker my eyes.
The impact that these seizures have on my life is markedly different to a tonic-clonic seizure. I will usually have a couple of absence seizures in the morning, generally at the weekend. Occasionally someone will point these out to me, but it doesn’t affect my activities. It’s more of a concern for me that people think I’m being rude and rolling my eyes. In contrast, if I had a tonic-clonic seizure, I would need some time to go and sleep it off. It would be a lot more concerning. If someone called an ambulance because I had an absence seizure, I would be quite annoyed because it was a waste of time. On the other hand, if I had a tonic-clonic seizure, it could be an appropriate step.
There are lots of different seizure types and it is important to appreciate factors like:
Different seizure presentations
Their varied impacts on the individual
The kind of assistance the person would require during and after the seizure.
Seizure types are classified according to where they arise from in the brain. They can start from:
The presentation of that seizure will then relate to its origin. For example, the seizures I experience both have a generalised onset.
Another important area of variation is the individual’s level of awareness during seizures. For example, in a tonic-clonic seizure someone will lose consciousness, but in a focal aware seizure an individual would not lose awareness. It is important to appreciate that, for someone who experiences seizures in only part of their brain, the symptoms can be very different.
For example, in the case of a focal seizure, someone may experience:
Sensory symptoms (like unusual smells or tastes, a tingling)
Emotional symptoms like a feeling of dread or déjà vu
Involuntary motor movements (like lip smacking, wandering around)
These visual resources, created by the Epilepsy Society may be helpful in understanding seizure classifications:
Whilst I think it is important to appreciate the differences between seizures, I am by no means saying that you need to know your ‘tonic’ from your ‘hyperkinetic’. That would be a difficult task as there are 40 seizure types[5]! Most individuals with epilepsy (or someone close to them) will know what symptoms they experience, what triggers them, how often they have them, and what, if any, help they need. I particularly appreciate resources such as the first aid information on the Epilepsy Action website which highlight that what you should do in the case of a seizure is likely to vary a lot.
Important questions to ask someone about their seizures could be:
IMPORTANT: Whilst the first aid required for people experiencing seizures may vary, it is important that if someone experiences a seizure that is over five minutes long, an ambulance should be called. The name for this is Status Epilepticus[7], which carries a risk of mortality and can lead to medical and neurological complications.
Perception and comorbidities
In court, I once worked with a service user who had epilepsy. She had an epilepsy alert bracelet that would often go off and sent an alert to her phone to let her know that she had a seizure. Often, she did not notice herself that she had them, but it didn’t phase her, it wasn’t dramatic, and we didn’t have to adjourn when the alert sounded.
This presentation and impact differs from the wider perception of epilepsy, as many may misperceive seizures as dramatic and debilitating. Alongside misperceptions about the symptoms of epilepsy, there are also seem to be many stereotypes about the lives people with epilepsy lead. In literature around epilepsy, descriptors such as ‘socially isolated’ often crop up. As with so many of the things I have discussed here, I think this is, at best, a generalisation – something that a brief caveat could dispel…
For some people with epilepsy, certain activities are restricted, but I don’t think there is anything inherent in people with epilepsy that means they would have difficulty interacting or forming relationships. I particularly wouldn’t want a panicked parent reading that on Google while waiting in A&E after their child has had their first fit. I’d choose to believe that, where people with epilepsy are socially isolated, this is because of the barriers in society rather than there being an aspect of epileptic people that means they are ostracised. However, I know this is perhaps my own cross to bear. At least society has stopped believing that people with epilepsy are possessed by evil spirits (Kaculini et al. 2021)[8]!
Of course, I know that these misconceptions about epilepsy arise because some people lead very different lives to me. People with epilepsy experience higher rates of certain comorbidities. For example, around 1 in 5 people with epilepsy have a learning disability (Epilepsy Society, 2019)[9]. Additionally, the cause of some epilepsies may affect the individual in its own right (for example in the case on head injury or stroke)[10]. Epilepsy often co-occurs with Cerebral Palsy, with studies giving incidence figures of Epilepsy in Cerebral Palsy as between 15 to 60% and higher (Sadowska et al. 2020) [11] . Further, the relationship between Epilepsy and different conditions can be complex. The risk for autistic children having epilepsy without a learning disability is 8% and the risk of epilepsy for autistic people who have a severe learning disability is 20% (National Autistic Society 2017)[12]. Thus, for these groups, epilepsy may be just one factor that makes up their presentation or need.
Whilst I was researching this blog, I read that in the UK 70% of people with epilepsy could be seizure free and only 52% are actually seizure free[13]. That’s quite a stark thing to read, but it does make me wonder whether that is because there are people who don’t have the ability to advocate for themselves like I do. Other people that may not have had the same impetus to control their seizures as I did, such as living independently, or going to university.
Now
I’m never quite sure how epileptic I am. I don’t have tonic-clonic seizures anymore because of my medication, so, theoretically, I could never tell anyone and be ‘normal’. I don’t tend to believe that epilepsy impacts my life, but, at the same time, I’ve never had a burning urge to be an HGV driver or a DJ in Ibiza. I am lucky to have found a job where it is the norm to travel on public transport and I do not need to drive. Things like that make me feel that I’m making choices and my path in life hasn’t been determined because of my epilepsy. But that might not always be the same and, at some point, I’ll have to change my medication and I may feel a lot less ‘normal’ again.
For about 10 years of my life, I’ve been taking Sodium Valporate (Epilim). This successfully controls my seizures, and felt a bit like a magic pill when other medications weren’t 100% effective. However, Sodium Valporate has become a lot more (in)famous recently for causing birth defects[14], which means that I’m continually telling health professionals that I won’t be becoming pregnant, and being offered other, less preferable, medications. Thinking about changing my medication is a big, ominous unknown. It’s hard to think about giving up my ‘normal’.
I described this predicament to an advocate and service user once, as the service user had children who were epileptic. The advocate took a breath and then responded, “You could get a dog”. I laughed and responded that you can’t get dogs for epilepsy like you do guide dogs. She replied, “You could get a dog instead”.
I’m a little more reticent now about talking to service users with epilepsy about my epilepsy. I used to think that it’s useful to share experiences as a way to relate and form rapport. Now I think that there are so many differences in what that actually means, that it’s not fair to compare. I think you have to give people space to feel what they want about it because, even if nothing disastrous is happening at the moment with your health condition, it’s still always there in the background. And I start and end every day by taking my pills.
For National Epilepsy Week, the charity Epilepsy Action is encouraging people to watch and share the video below, which explains how to help someone who is having a tonic-clonic siezure. You can learn more about epilepsy, donate and get involved in National Epilepsy Week by following and exploring organisations like Epilepsy Action, Epilepsy Society and Young Epilepsy.
[8] Kaculini CM, Tate-Looney AJ, Seifi A. The History of Epilepsy: From Ancient Mystery to Modern Misconception. Cureus. 2021 Mar 17;13(3):e13953. doi: 10.7759/cureus.13953. PMID: 33880289; PMCID: PMC8051941.
Dementia Action Week is all about supporting people with dementia and raising awareness of this common degenerative condition. There are currently around 900,000 people affected by dementia in the UK. This year, the theme of Dementia Action Week is Diagnosis. The Alzheimer’s Society has chosen this focus to highlight a recent decline in dementia diagnosis rates, demonstrate the benefits of receiving a diagnosis and tackle misconceptions about memory loss being a normal part of aging.
Video from Alzheimer’s Society
What is dementia?
Dementia is an umbrella term for a range of progressive conditions that affect the brain. Each type of dementia stops a person’s brain cells (neurones) working properly in specific areas, affecting their ability to remember, think and speak.
There are over 200 different types of dementia. Alzheimer’s disease is the most common, followed by vascular dementia. Different types of dementia cause damage to different parts of the brain, and therefore have different symptoms. Each person is unique and will experience dementia in their own way. People often associate dementia with memory loss, but while this is the case for some, there are many other symptoms including:
• Problems with concentration.
• Difficulty following a ‘train of thought’.
• Difficulty following conversations.
• Problems with word finding.
• Difficulties making decisions and judgements.
• Difficulties with eating, drinking, and swallowing.
• Changes in personality or behaviour; becoming withdrawn.
• Difficulties with visual perception and spatial awareness.
• Literacy and numeracy difficulties.
• Problems with perception, orientation and movement
Dementia is progressive, as time goes on, communication will likely become more difficult for someone with dementia. Although dementia can take years to advance, symptoms can worsen at each stage. Receiving a diagnosis is often an important step towards managing symptoms and coping with dementia. The Alzheimer’s Society found that 90% of people reported that getting a diagnosis had been helpful, citing a number of reasons, including access to professional advice and support, the ability to plan for the future and avoiding reaching ‘crisis point’.
Dementia and legal proceedings
While some participants in legal proceedings who have dementia may be found to lack capacity (or may not be fit to plead), others will have capacity but may have cognitive or communication challenges which the court will need to accommodate to ensure fair participation.
In this blog, we’ll explore some of the common cognitive and communication difficulties which might impact an individual with dementia’s participation in legal proceedings. We’ll also unpack some strategies which can be used to assist.
Aphasia (using and understanding language)
People with the most common types of dementia, for example, Alzheimer’s disease and vascular dementia, usually have a mild form of aphasia (NHS). Aphasia is a communication disorder which impacts a person’s expressive and receptive communication.
Expressive aphasia affects someone’s ability to find the right words. Sometimes related words might be used instead, for example (‘vehicle’ instead of ‘helicopter’) or substitute descriptions (‘thing to put food on’ instead of ‘plate’) may be used. Other people may find it difficult to insert a replacement word. Expressive aphasia doesn’t mean that an individual doesn’t recognise a person, item or term, or doesn’t know what they are discussing, they are simply unable to access the correct name or ‘label’.
If the person with expressive aphasia struggles to find the words they want to use, or they use words which don’t make sense, acknowledge what they’ve said and encourage them to say more. It may also be helpful to encourage them to draw, write or gesture, to help them convey what they wish to communicate. Additionally, if they struggle to find the words they want to use, or use words which don’t make sense, it may be helpful to acknowledge what the person has said, then encourage them to explain further.
Receptive aphasia affects the person’s understanding, making it difficult for someone to process and understand the language they hear.
If someone with dementia finds it challenging to understand verbal information, it can help to use simple language and concrete examples. Avoid using complex language or abstract concepts. Instead use familiar ‘everyday’ words to help the person understand what you are saying. Speaking in short sentences and imagining giving information in ‘bullet points’ can also be helpful. Make sure you clearly indicate when you begin a new topic and allow extra time for the person to refocus when switching between subjects.
It may be useful to use non-verbal communication yourself when interacting with someone with dementia. For example, a great deal of information can be conveyed through body language, facial expressions and tone of voice. Visual prompts can also be helpful, for example a pictorial list of the stages in a trial.
Speech difficulties
People with dementia may experience changes in their tone of voice or pitch. They may speak more slowly or loudly than usual, or they may sound more monotone. This can make it difficult for others to understand their speech or to interpret their emotion. If someone with dementia is not able to express themselves clearly, they may lose confidence, and feel anxious or depressed. They may also get frustrated because they are not able to communicate in the way they used to.
If a person is finding communicating through speech challenging, there may be strategies which assist. Non-verbal communication, such as facial expressions, gestures, and body language, can play an essential role in communication. For some individuals, exploring other communication mediums (such as writing, texting or typing) may also be assistive.
Technology is also a great asset, with many apps available to help support communication. Some helpful apps include:
Memory loss can be a symptom of any type of dementia, it is often among the very first signs in Alzheimer’s disease, and this can impact communication in several ways. People with dementia may repeat themselves or forget what they were saying, losing their ‘train of thought’. They may also have difficulty remembering important information such as names, dates or events.
Memory loss can be a distressing part of dementia, both for the person with the condition and for the people close to them. Memory loss can occur due to damage to the brain, affecting areas involved in creating and retrieving memories.
In court, it is especially important that respondents or defendants (in particular) can follow the thrust of evidence and retain key details from hearings, in order to make informed decisions. It may be helpful to give the person with dementia written cues, such as a ‘court diary’ to assist with their retention of their hearing or trial. If reading is difficult for them, voice notes may be of assistance. Regular recaps of key points may aid the person with dementia to retain important details. Another helpful measure is taking regular breaks within the court day to check the individual’s retention and understanding of details, and to allow them to ask questions about anything they are unsure about.
Other cognitive difficulties
As dementia progresses, it can become challenging for people to maintain their focus on a conversation or activity for an extended period. They may become increasingly distracted or lose focus, leading to a disjointed or incomplete conversation, or causing them to miss important information. It’s also important to consider the impact of fatigue, which may be more severe.
Dementia affects the brain and has an impact on cognitive ability. Therefore, someone with dementia may not be able to think as quickly as they used to, may not understand complex ideas and may become easily confused. They may need additional processing time to figure out how to respond to a sentence or question. It can also be harder for people with dementia to hold multiple pieces of information in mind at once.
In court (if the individual has capacity), the individual’s cognitive functioning will need to be considered so that strategies can be put in place to ensure they can participate in their trial or hearing to the best of their ability. Strategies may include shorter court days, more frequent breaks, regular recapping of information and the other memory supportive strategies explored in the previous section. It may also be helpful to find out what time of day they are best able to attend to information (for example, when they feel most alert and least fatigued) and to schedule key events within the trial or hearing to accommodate these needs (for example, scheduling their evidence when they are most alert).
Dementia can have a significant impact on cognition and communication, including during legal proceedings. The difficulties associated with dementia can hinder an individual’s ability to understand and retain information, and express themselves effectively, potentially impacting their ability to participate in their trial or hearing. However, small adjustments can improve participation for people with dementia, depending on the nature and progress of their condition. It is crucial for court professionals to employ strategies that accommodate the unique needs of the individual.
If you want to read more, the Alzheimer’s Society has some additional tips on communication as well as lots of other useful information. The dementia support line on 0333 150 3456 is also there to help.
This week is Deaf Awareness Week and the theme for 2023 is “Access to Communication”. To mark the event, we’ve shared some information, tips and resources below, to help ensure access to communication in court for people with hearing loss.
Hearing loss is very common, particularly among older age groups. In the UK, it is estimated that 1 in 6 people have some form of hearing loss (that’s around 12 million people across the country). The Royal National Institute for Deaf People (RNID) estimates that “in the UK, more than 40% of people over 50 years old have hearing loss, rising to more than 70% of people over the age of 70”.
As hearing loss is so common, it’s essential that knowledge is shared to improve understanding of the condition and strategies communication partners can use to help others achieve Access to Communication.
Intermediaries and hearing loss
At Communicourt, we rarely work with profoundly d/Deaf court users who use sign language to communicate. These individuals may require a sign language interpreter and/or lip reader and, with this support in place, may not require an intermediary. When a d/Deaf court user also requires intermediary assistance, this is often provided by specialist d/Deaf intermediaries (like Chantelle De La Croix and Chris Bojas).
Communicourt intermediaries do, however, frequently work with service users who have different degrees of hearing loss.
Hearing loss is a term used when sound signals do not reach the brain. There are many different types of hearing loss and different degrees of severity:
Mild hearing loss – The individual may have difficulty hearing speech clearly in a busy environment. They may struggle to hear quiet speech, especially soft sounds like “s” and “f”.
Moderate hearing loss – The individual may struggle to hear speech at a normal volume and may require amplification (using devices such as a hearing loop).
Severe hearing loss – The individual will not be able to hear normal speech and may only be able to hear loud sounds.
Profound hearing loss – The individual will not be able to hear any speech and may only hear some loud sounds.
Hearing loss at court
The courtroom can be an especially challenging hearing environment, even for people who do not have a hearing impairment. Rustling papers, multiple people talking at once, large rooms, technical difficulties playing video evidence, sitting in the dock behind a glass window – all of these factors and more can make it particularly difficult to hear clearly at court.
For court users with hearing loss, these factors can make hearing proceedings even harder, adversely impacting their ability to follow legal argument and evidence.
Hearing aids and hearing loops are two devices which can amplify sound in the courtroom. Hearing loops can be used separately from or in conjunction with hearing aids at court. The court user can be provided with a hearing loop headphone set or can wear a device around their neck which broadcasts sound from the courtroom hearing loop to their hearing aid (when these are set to the ‘T’ function).
However, it’s important to remember that court hearing loops can be affected by feedback and background noise, so may not ensure clear hearing at all times. You can read more about hearing loops in this Communicourt blog (which includes a judge’s experience of using a hearing loop).
Strategies to support hearing difficulties at court
The strategies required to support an individual with mild or moderate hearing loss will vary from person to person and may be affected by any other communication needs they have. The following general tips may be of assistance in the courtroom and in private legal meetings:
Learn more about the person’s hearing. Is their hearing different in different environments? How has their hearing loss previously impacted them in legal proceedings? What assists their hearing? Have they used a hearing loop before? What was their experience of this?
Adapt the communication environment. The court user is likely to hear speech sounds best in a quiet setting, without background noise. A busy courtroom with loud typing and paper shuffling may be particularly challenging. Adjustments (like seating them closer to the judge and barristers) or repetition of key points may be required.
Minimise background noise as much as possible. This might include turning off fans or buzzing equipment in the room, closing windows, or choosing a meeting room on the ‘quiet side’ of the building.
Face the individual and ensure you have their full attention before speaking, so that they can see your mouth clearly. Visual cues like lip-shape can help support communication.
Make sure everyone can see each other, round tables are best for meetings. Make sure there is nothing on the table obstructing your view of each other. Ensure there is good lighting in the room so everyone can be seen clearly.
Speak clearly at normal speed, don’t slow down your speech as this distorts your lip patterns, making it harder to use visual cues to support hearing.
Ensure just one person speaks at a time. It can be much more challenging to hear clearly when multiple people are speaking.
Use writing (if your client has effective literacy), on paper, on a laptop screen or via text, to communicate information which the individual is struggling to hear.
Repeat yourself when necessary, be patient, don’t say “it doesn’t matter”.
If the court user is using a hearing loop in the courtroom:
Avoid hybrid hearings, if possible. These can cause feedback.
Use a flashcard or agreed signal to allow the individual to indicate when they are unable to hear. The clarity of the hearing loop may fluctuate.
Be alert to issues with interpreters and intermediaries. When wearing a hearing loop, the court user may not be able to hear their interpreter or intermediary clearly and alternative arrangements may need to be made. For example, permitting the court user to connect to the hearing remotely from a private room. This will allow the intermediary or interpreter to provide summaries or translations at a loud volume (without disturbing the court).
The Advocate’s Gateway – Planning to question someone who is deaf – this resource includes information relevant to court users who are d/Deaf but also features some useful information for advocates working with court users who have a hearing loss.
SignHealth is a deaf charity run by deaf people (Text: 07800 003421, Email: da@signhealth.org.uk). You can access support via referral forms on their website. They offer:
Counselling – psychological therapy service for Deaf adults delivered in British Sign Language (BSL). All of their trained therapists are either Deaf or fluent BSL users.
Domestic violence support including referrals for Deaf IDVAS (Independent Domestic Violence advocates)
Probation “Deaf link” project supports deaf people on probation
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