Homeless people eight times more likely to be affected by epilepsy
Homeless people are up to eight times more likely to have epilepsy than the national average. David Parker-Radford, homeless health project manager at the Queen’s Nursing Institute explains why a guide on how to bridge the gap is needed now more than ever before
Homeless people are up to eight times more likely to have epilepsy than the national average. David Parker-Radford, homeless health project manager at the Queen’s Nursing Institute reveals why a guide on how to close the gap between the two is needed now more than ever.
While epilepsy affects approximately 1% of the general population, the rate among homeless people is up to 8%.
Despite this, people experiencing homelessness often struggle to access the diagnostic appointments and tertiary care needed, and have additional challenges when managing this common but unpredictable and serious neurological condition.
Factors such as being alone, additional stress, poor sleep and alcohol risk mean people who are homeless are at higher risk of having unmanaged epilepsy, seizures in risky situations and sudden unexpected death in epilepsy.
The Queen’s Nursing Institute (QNI) homeless health network, where I am project manager, worked with epilepsy specialist nurses and homeless health nurses to create a guide for health professionals about handling epilepsy and homelessness.
It gives background information about epilepsy, seizure types, seizure first aid and treatment options and explores how nurses can support a person who is homeless living with epilepsy to gain a greater understanding of their environment and the impact this may have on their epilepsy.
The World Health Organization says approximately 50 million people worldwide have been diagnosed with epilepsy, with more than half a million in the UK (WHO 2016).
Although it can affect all ages, there is evidence to suggest a higher prevalence among people who are more deprived and people who experience homelessness. Homeless people with epilepsy can be far more vulnerable.
Last year the QNI released online guidance for nurses and other health professionals to raise awareness about supporting people with epilepsy in vulnerable housing circumstances.
What is epilepsy?
Epilepsy is a neurological condition defined by a tendency to recurrent seizures (Epilepsy Action, 2016). Seizures are occurrences of excessive electrical activity in the brain, causing a variety of effects which can include losing consciousness, muscle contractions and spasming and perception changes. Seizures follow three sequential processes:
- They start in one lobe of the brain and affect that lobe only (focal/simple partial seizure).
- They can start in one lobe of the brain and spread across other areas of the brain (complex partial seizure).
- They involve epileptic activity in both hemispheres of the brain (generalised seizure).
Seizures can last from a couple of seconds to a few minutes long. ‘Seizures’ is the correct terminology to explain epileptic activity. Alongside the process they follow, seizures are also classified into five main typologies, though others are sometimes used.
These are Tonic–Clonic, Atonic, Tonic, Myoclonic – which describe what is happening to the muscles during a seizure (jerking, contracting, relaxing) and Absence, to describe a brief impairment of consciousness or blanking out. These terms are descriptive and are therefore more helpful than older terminology such as grand-mal or petit-mal.
The experience of epilepsy can vary significantly for patients depending on their age, the severity of their epilepsy, their seizure typology, the cause of their epilepsy and the prognosis.
Some patients experience many seizures every day, others are seizure-free. The experience of epilepsy will vary according to a person’s mental resilience at managing an unpredictable long-term condition, their family/carer network support, housing and financial well-being. Socio-economic factors are important to consider when determining the impact of epilepsy on an individual.
What causes epilepsy?
People can be born with epilepsy as a result of congenital deformations, or can acquire epilepsy as a result of brain injury, drug use, or brain tumours. Often the cause of epilepsy is idiopathic (not known). Epilepsy may improve or even disappear over time, it may stabilise with medication or treatment, or it may get worse.
First-line epilepsy treatments are usually anti-epileptic drugs (AEDs). People take these daily with the aim of reducing or eliminating seizures. Other treatments such as diet, nerve stimulation and brain surgery are also available (Epilepsy Society, 2016).
AEDs can cause side effects for people living with epilepsy such as headaches, tiredness or sleepiness, or difficulties with thinking and memory.
Why a guide on epilepsy and homelessness?
There is evidence that many health conditions follow ‘the social gradient in health’ (Institute of Health Equity, 2010). The data from Professor Marmot and his team show that people with the fewest resources in society experience the poorest health. This gradient is also evident in epilepsy.
In a ground-breaking French research study Epilepsy among the homeless: prevalence and characteristics (Laporte, 2006), Anne Laporte and her team found that the prevalence of epilepsy in their research study among a homeless population was 8% – approximately eight times higher than the prevalence in the general population.
The bigger risks
Epilepsy can enhance risks to someone who is homeless. For example, storing prescription medication is an issue for people if they are street-sleeping. Some anti-epileptic drugs (especially benzodiazepines) have a high street value and carrying large amounts of them may inadvertently expose people to threats of crime, violence and personal theft.
People experiencing homelessness are likely to be living in high stress, poor sleep environments where they may turn to alcohol, synthetic cannabinoids or other drugs as a coping mechanism.
These increase the risk of having seizures and interact negatively with AEDs causing further health problems. A diagnosis of epilepsy, if it has an effect on day-to-day activities, should be considered grounds for determining ‘vulnerability’ when making a local authority application for housing under homelessness legislation.
Although seizures in people with epilepsy are not always a medical emergency, they can be if they last over 5 minutes or if people lapse back into seizure after coming out of a seizure. If seizures are seen and if people are in any doubt, an ambulance should be called as a precaution.
Be careful to fully evaluate a patient visiting health services. Behavioural symptoms such as confusion, aggression and shouting can be present in the post-ictal state following a seizure and may not be attributed to alcoholism or a mental health condition.
Risk of death
The BBC programme Who Killed Mark Faulkner? examined the high-profile death of Mark Faulkner, who became homeless after his family relationships broke down. He did not adhere to AEDs and died of sudden unexpected death in epilepsy (SUDEP) in London in 2000.
This exposed a risk that others with poorly managed epilepsy face. The general risk of SUDEP to the epileptic population is one in 1000, rising to up to one in 50 for those who have frequent convulsive (tonic-clonic) seizures and those who have such severe epilepsy that they are considered for brain surgery or for living at specialist centres.
According to the charity SUDEP Action, other risk factors include active seizures, abrupt changes in medication or not taking medication as prescribed, excess drinking and/or taking illegal substances and unwitnessed seizures. Unmanaged seizures can also lead to further damage to the brain and lead to other difficulties with cognition and other brain functions, which can have a further alienating effect on the patient.
The role of nurses
Nurses played a key role in supporting the development of the QNI’s working with epilepsy and homelessness guidance. The QNI surveyed epilepsy specialist nurses about points they wanted included, while the QNI’s national homeless health advisory group helped edit it.
As a learning resource, the guidance should help to raise awareness of the higher risk of homelessness and challenges faced in reaching and receiving treatment, and encourage epilepsy specialist nurses to work proactively with homelessness services to reach this group of patients.
It should also help mainstream and homeless health specialist nurses and student nurses to have a wider awareness about epilepsy and its potential impact for someone experiencing homelessness.
The web version of the guide is available as a free download
- Epilepsy Action, 2016. National Guidance
- Institute of Health Equity, 2010. Key Messages of ‘Fair Society Healthy Lives’.
- Laporte A et al (2006). Epilepsy among the homeless: prevalence and characteristics. The European Journal of Public Health, 16 (5) pp. 484-486. Available through Oxford University Journals website.
- World Health Organization, 2016. Epilepsy, Media Briefing Sheet.
About the author
David Parker-Radford @DavidPRadford is the homeless health project manager at The Queen’s Nursing Institute, and was also diagnosed with epilepsy 16 years ago.