Epilepsy care and reducing the risk of drowning in the bath | Nursing Times

Introduction

The NHS is currently facing multiple challenges, one of which is longer waiting times for new and routine outpatient appointments. The increased demands of delivering care during the Covid-19 pandemic led to substantial backlogs and longer waiting times for patients, including those on a waiting list for treatment (NHS England, 2023). At the end of January 2023, 7.2 million patients were waiting to start treatment, 58% of whom had been waiting up to 18 weeks; 5% had been waiting over a year. This failed to meet the NHS Constitution standard that >92% of patients on incomplete pathways start treatment within 18 weeks of referral (NHS England, 2023).

What is epilepsy?

Epilepsy is a common neurological condition that affects almost 1% of people in the UK (NHS Inform, 2024). Factors that may increase the risk of epilepsy include head injury, stroke, brain tumour and, among older people, neurodegenerative diseases such as Alzheimer’s disease. However, in 65% of people with epilepsy, the cause is unknown (Epilepsy Research Institute UK, no date).

Epilepsy is diagnosed after someone has more than one seizure (NHS Inform, 2024). It is defined as the tendency to have repeated seizures that start in the brain, although not all seizures are due to epilepsy; other conditions, therefore, need to be excluded, such as heart conditions (Epilepsy Scotland, no date).

In 2017, the International League against Epilepsy (ILAE) revised the classification of seizure types, dividing them into:

• Generalised seizures, which affect both hemispheres of the brain from the start of the seizure;
• Focal seizures, which start in one part of the brain, and can be further divided into either retained or impaired awareness seizures;
• Seizures of unknown onset.

All three types can be subcategorised as motor (movement) or non-motor (without movement) seizures (Fisher et al, 2017).

“People who experience a first seizure should be referred to a neurologist within two weeks”

Epilepsy care

The National Institute for Health and Care Excellence (NICE) (2022) recommends that all adults who are suspected of having a first seizure be referred “to a clinician with expertise in assessing first seizures and diagnosing epilepsy”. This is paramount, as it allows a neurologist to discuss starting epilepsy medication when a diagnosis of epilepsy is confirmed. Following a confirmed diagnosis, NICE (2022) recommends epilepsy medication is prescribed by a specialist with the aim of stopping further seizures. Its guidelines also highlight six categories that should be discussed during first and follow-up appointments:

• Activities of daily living;
• Cognition;
• Medication;
• Mental health;
• Reproductive health and pregnancy;

Sudden unexpected death in epilepsy (SUDEP), in which no other reason for death is found (NICE, 2022).

The National Audit of Seizure Management in Hospitals (NASH) reviews the care and facilities available to people with epilepsy. The key findings of its most-recent review were that, of patients attending UK emergency departments (EDs) in 2018-19:

• 55% of patients with epilepsy had not seen a specialist in the previous year;
• More than 33% of patients who had had a suspected seizure were not referred to a specialist;
• 61% of people with established epilepsy were not referred onwards to a specialist;
• Older people were less likely to be referred to neurology than younger people;
• 61% of people had already been diagnosed with epilepsy, indicating that medication needed to be introduced or modified “to improve seizure control” (NASH, 2020).

The NASH’s (2020) review found that very little had changed in the eight years since its previous audit. Its recommendations included the following:

• Clinical pathways should be improved to provide coordinated care between ED staff, epilepsy specialists and GPs (NASH, 2020);
• Patients should receive a referral to specialist care after an ED attendance, especially following a first suspected seizure (NASH, 2020);
• Primary care staff should identify frequent ED attendances and seek advice from neurology or refer patients appropriately (NASH, no date);
• Useful information should be provided for patients about how they can safely manage epilepsy (NASH, no date).

Injuries and mortality in people with epilepsy

Seizures can cause a range of physical injuries, including dislocations and fractures; these most commonly affect the head and extremities (Mesraoua et al, 2020). Additionally, a systematic review by Watila et al (2018) found that people with epilepsy are at an increased risk of premature mortality compared with the general population. The study categorised such deaths into three groups:

• Epilepsy-related deaths, such as SUDEP and status epilepticus;
• Deaths directly related to the underlying cause of epilepsy, such as a neoplasm;
• Deaths due to external causes, such as drowning, accidents, burns and suicide (Watila et al, 2018).

0.1% of people with epilepsy die prematurely from SUDEP; the risk is higher in people who have generalised tonic-clonic (convulsive) seizures, especially if they happen at night or during sleep (SUDEP Action, no date).

The ILAE commissioned a study by Thurman et al (2017), which reviewed research into epilepsy deaths in the UK, Finland, Iceland, Canada and the US. The researchers found that there are disease characteristics that increase the risk of premature mortality:

• The cause of epilepsy is an important factor in premature death, and structural metabolic (symptomatic) epilepsy carries a greater risk than epilepsy with a genetic or unknown cause;
• People with epilepsy whose seizures do not fully remit under treatment and those who have tonic-clonic seizures have a higher risk of premature death.

Drowning among people with epilepsy

There have been no large, in-depth, retrospective, quantitative studies in the UK that have analysed data from post-mortems in relation to drowning in the bath among people with a history of seizures and/or epilepsy. However, Box 1 explores a case study of a near-drowning event.

A retrospective study by Dunne et al (2022) examined data from the Drowning Prevention Research Centre Canada’s database. Data was examined for all unintentional drownings of people of all ages between 2006 and 2017. The researchers identified that 33% of people (n=1,412) had a pre-existing medical condition, of which the most prevalent were cardiovascular disease (54%), physical disabilities (16%) and “seizure disorders” (14%).

The results showed that most drowning deaths occurred when the person was alone or the drowning was not witnessed. People with cardiovascular disease, respiratory diseases and physical disabilities drowned most frequently in lakes and ponds; people with seizure disorders drowned most frequently in the bath.

Among people with pre-existing medical conditions, people with seizure disorders showed a significantly increased risk of drowning across all age categories. Females aged 20-34 had the greatest risk (Fig 1), at 23 times greater than that of the general population.

Empowering patients with epilepsy

Primary care nurses

This is a pertinent time for primary care practitioners to reflect on the services they provide for people with epilepsy. NICE’s (2024) guidance advises that adults with epilepsy should be reviewed on a yearly basis in primary care. However, because the condition was removed from the Quality and Outcomes Framework in 2014, rates of annual face-to-face reviews of people with epilepsy in primary care fell from 95% in 2010 to 14% in 2016 (Minshall et al, 2021).

Due to the increased risk of drowning, people with epilepsy are advised to shower rather than bathe (Epilepsy Action, 2024; NICE, 2022), and to have a shower cubicle with a flat floor rather than a shower tray, so that water cannot collect (Epilepsy Action, 2024). To further enhance bathroom safety, we recommend that designated epilepsy nurse clinics in primary care should also consider the following when reviewing adults with suspected seizures and epilepsy:

• Establish whether they have a working shower;
• Advise them to tell someone when they are in the bathroom and not to lock the door;
• If they wish to take a bath, advise them to have close supervision;
• Provide written information about the risks associated with bathing;
• Have repeated discussions with them and their family members and carers about following the above advice.

Additionally, primary care nurses should identify ways to communicate with an epilepsy nurse specialist (ENS). They should also identify patients who have frequent admissions to the ED and consider whether a referral to social services is required. Under the Care Act 2014, local authorities in England have a duty to provide home assessments and care and support plans for people who need them; for people with epilepsy, this might include necessary adjustments such as a shower being installed.

NHS England (no date) has developed an epilepsy toolkit in partnership with Epilepsy Action, SUDEP Action and Young Epilepsy to help local areas gain an enhanced understanding of their epilepsy system. Additionally, there are organisations that can provide advice and support for both health professionals and patients, including information about bathroom safety (Box 2). In particular, Epilepsy Action has some excellent, free online learning resources that have been specifically designed for primary care and for practice nurses; these give an overview of epilepsy, including causes and diagnosis, as well as information about the annual epilepsy review.

ENSs are another resource for practice nurses. Contacting them can allow practice nurses to refer patients and discuss their cases when they need advice or help identifying patients who require urgent review. NICE’s (2022) guidelines explain which patients can be reviewed by ENSs; this includes adults admitted to the ED.

Practice nurses who would prefer to work in conjunction with a GP could consider reviewing patients post-diagnosis then six months later. The practice nurse could discuss activities of daily living, such as bathroom safety and first aid and, if they identify concerns, the GP could review the patient. Primary care staff could also consider the findings of recent research to identify high-risk patients and those at risk of premature death, including people:

• Who have frequently been admitted to the ED (NASH, 2020);
• Aged ≤50;
• Who have tonic-clonic seizures;
• Who have seizures that do not fully remit under treatment (Thurman et al, 2017).

Emergency department nurses

The ED is an essential acute service for adults admitted with either a suspected seizure or confirmed epilepsy. When the patient has orientated and recovered, ED nurses can discuss the risk of drowning when having an unsupervised bath and explain that showering is a safer option. The discharge summary should incorporate these conversations as well as accurate referral outcomes. Before discharge, written information should be offered to the adult and any accompanying spouse, family member or carer; such information is available from a range of UK-based charities (Box 2).

To improve care for patients with epilepsy, we recommend that nurses working in the ED should:

• Reflect on the importance of referral for adults admitted with either a suspected seizure or confirmed epilepsy;
• Consider an audit of discharge letters for such patients;
• Examine effective ways to communicate with primary care nurses and ENSs regarding high-risk patients.

The discharge letter is a key document through which hospitals communicate with primary care; accuracy and timeliness are crucial to ensure continuity of patient care (Murphy et al, 2017).

In a study by Weetman et al (2021), 53 GP practices were asked what contributed to a successful discharge summary. The study concluded that failure to implement national discharge letter guidance contributed to ineffective communication between hospitals and general practice. It identified teaching and audit as two factors that ensure the quality of discharge letters and reduce patient risk at the point of discharge.

NICE’s (2022) guidance states that adults with suspected seizures should be referred for review by a clinician with expertise in diagnosing and assessing epilepsy. However, as discussed above, NASH (2020) identified that this does not always happen.

“Due to the increased risk of drowning, people with epilepsy are advised to shower rather than bathe”

Epilepsy nurse specialists

ENSs are nurses who have had specialist training in caring for people with epilepsy. ENSs may work in NHS hospitals or can be community-based. There is some evidence that ENSs improve clinically important outcomes, such as knowledge and rates of anxiety and depression among people with epilepsy in secondary and tertiary care (NICE, 2022).

The ENS is, therefore, an important resource for both nurses working in the ED and primary care nurses. Both groups should consider identifying the nearest ENS, as well as how to get in contact with and refer patients to them.

Not all NHS hospitals have an adult ENS. However, there may be a neurologist with an interest in epilepsy and/or a first-seizure clinic. Many NHS trusts explain which neurology services they provide on their website; this is one way in which primary care nurses can explore which specialist services are available for adults with epilepsy and how to access and contact them directly. Referral to the appropriate specialist allows diagnosis and a treatment plan to be commenced. This considerably reduces the risks associated with seizures, such as drowning in the bath. Health professionals in the ED and primary care who discuss such risks give people with epilepsy and suspected seizures the choice to make potentially lifesaving changes to their daily lives.

Another key role of ENSs is sharing information between disciplines. A recommendation based on the findings of NASH (2020) was coordinated care between ED staff, epilepsy specialists and GPs.

“Health professionals can give people with epilepsy the choice to make potentially lifesaving changes to their daily lives”

Conclusion

Epilepsy is a common condition, in which patients have seizures that start in the brain. Evidence has demonstrated an increased incidence of premature deaths in people with epilepsy compared with the general population, including those caused by external causes such as drowning in the bath.

To control patients’ seizures and reduce their risk of such premature mortality, the first step is referral to a specialist in assessing and diagnosing epilepsy. EDs and primary care services play an essential role in the referral process.

The second step is for ENSs, ED nurses and primary care nurses to talk to patients with confirmed and suspected epilepsy about the risks associated with bathing. The discharge summary is an important document in which to record referral and safety information, and allow primary care staff to continue care.