Epilepsy care at home: seizure plans, rescue medication and staying safe

The plan is written with your relative by the people who treat their epilepsy. NICE's guideline on the epilepsies, NG217, says the person, and their family or carers where appropriate, should be given a copy of their care plan, and that information and care planning sessions are part of the epilepsy specialist nurse's job. The same guideline says every adult with epilepsy should have access to an epilepsy specialist nurse, and that somebody who is still having seizures should be offered sessions with the nurse at least twice a year and after any visit to A&E. If there is no specialist nurse or no plan, ask the GP for a referral.

Everybody who looks after your relative needs to have read it, and that includes you. A seizure looks different from one person to another, and the plan describes what is usual for this person: what their seizures look like, how long they normally last and how they are afterwards. Without it, a new carer cannot tell whether a two-minute seizure is ordinary for your relative or longer than it should be, so they should read it before their first visit.

If your relative is older or has a learning disability, NICE asks clinicians to allow longer appointments and to share information with the people involved in their care where that is appropriate. Going with them to the review and bringing the seizure diary is one of the most useful things a family can do, because you see the seizures and the clinician does not. The care plan guide covers the rest of the day's care, and what complex care means explains where epilepsy sits among conditions that need a trained carer.

These words are taken from the NHS page what to do if someone has a seizure, and from the NHS page on epilepsy. The NHS also says that people with epilepsy do not always need an ambulance every time they have a seizure, because their care plan says what to do. The plan is what lets a family or a carer handle a seizure that is normal for this person calmly, and recognise one that is not.

Timing is easy to forget in the moment. Look at a clock or start the timer on your phone as soon as you notice the seizure, because "longer than usual" can only be judged against a time. For the recovery position, the NHS points to St John Ambulance. Other kinds of seizure need different handling, and Epilepsy Action's first aid pages cover each one.

1. 1

   Prescribed for this person

   The doctor or specialist

   Epilepsy Action says rescue medicine may be prescribed if the doctor thinks somebody is at risk of seizures that go on too long. The NHS says a family member or carer will need to give it, because the person cannot give it to themselves during a seizure.
2. 2

   Written into their plan

   The epilepsy team

   NICE's guideline committee says the emergency management plan should include details of any emergency medicine prescribed, who is trained to use it and when to give it. The dose and the timing are set for your relative, not taken from a leaflet.
3. 3

   Training for the people who will give it

   Usually the specialist nurse

   Epilepsy Action says you need to be trained to give rescue medicine, and that an epilepsy specialist nurse or community nurse will usually give the training. Tell the nurse who else, such as a regular carer, may need to give it.
4. 4

   Given exactly as the plan says

   During a seizure

   The trained person follows the plan, including when to ring 999. NICE says that if a convulsive seizure lasting 5 minutes or more does not respond to the first dose, the emergency services should be called.

For a paid carer the rule is the same as for anybody else. The NHS says you can follow somebody's care plan if you know what to do and have been trained, and Epilepsy Action says rescue medicine should only be given by somebody who has been trained. The plan names who that is. A carer who has given buccal midazolam to somebody else brings useful experience, but the plan, the dose and the seizures are your relative's own, so the carer gives it for your relative only once trained for this person, and only in the way the plan sets out. Giving medicine for an emergency like this is a healthcare task handed to a carer by a professional, and our guide to delegated healthcare tasks explains how that handover is supposed to work and who remains responsible.

PrimeCarers does not check any carer's training, qualifications or references, so none of this can be assumed from a profile. If you want a carer who can give rescue medication, ask what they have done before, then ask the epilepsy specialist nurse to arrange the training and add the carer's name to the plan. Keep a copy of the plan with the medicine. Epilepsy Action's page on rescue medicine explains the medicines and the training.

Date every entry and keep one diary, so carers and family write in the same book. Epilepsy Action and the Epilepsy Society both offer free seizure diaries, on paper and as apps. Our guide to keeping a care diary covers how a family and carers can share one record of the rest of the day, and a seizure diary sits well alongside it.

A short video can help too. NICE says clinicians should use eyewitness accounts and video footage where possible when they assess seizures, and the Epilepsy Society suggests filming unusual movements or behaviour, if the person agrees, so the doctor can see whether it was a seizure. Ask your relative, when they are well, whether they agree.

Our guide to pendant alarms and sensors explains how the different kinds work and who responds when one goes off, and the Epilepsy Society's page on alarms and safety equipment covers the epilepsy-specific ones. The same charity's safety and risk pages go room by room.

Seizures at night, and supervisionSection titled Seizures%20at%20night%2C%20and%20supervision

The NHS says there is a small risk of dying suddenly with epilepsy, called sudden unexpected death in epilepsy (SUDEP), that it is rare, and that epilepsy treatment can reduce the risk. NICE asks clinicians to talk this through with the person, and with family and carers where appropriate, and names taking medicines as prescribed and sleeping alone without supervision among the risks that can be changed. For somebody who has seizures during sleep and has been assessed as at higher risk, NICE says the possibility of more supervision at night, for example a night monitor, should be discussed. The practical step is to ask the specialist nurse whether this applies to your relative. Epilepsy Action has clear information if you want to read more.

If the answer is that somebody should be awake nearby, a waking night carer on PrimeCarers costs £150 to £160 a night with our fee included, and the difference between a waking night and a sleep-in matters here, because a carer who is asleep may not hear a seizure. A night carer who may need to give rescue medication must be trained and named in the plan.

DrivingSection titled Driving

The NHS says that anybody who has had any type of seizure must not drive and must tell the DVLA. The gov.uk page on epilepsy and driving says they must stop driving straight away, and that when a car licence can be reapplied for depends on the type of seizure. After seizures while awake with loss of consciousness, it is once they have gone at least a year without one, and there are separate rules for other kinds of seizure. For an older parent who is also becoming forgetful, dementia and driving covers how to have that conversation.

Epilepsy after a stroke, or alongside dementiaSection titled Epilepsy%20after%20a%20stroke%2C%20or%20alongside%20dementia

For somebody older, the medicines need more care. NICE asks prescribers starting an epilepsy medicine in an older person to check for interactions with the other medicines they take, and usually to start at a lower dose and increase it slowly. Tell the nurse about any new drowsiness or unsteadiness, and any change in the pattern of seizures. If your relative is recovering from a stroke, stroke recovery care covers the rest of what care at home involves. If they are living with dementia, the dementia care guide is the place to start, and NICE points the epilepsy team to its dementia guidance on coordinating care, so ask who is leading.

Epilepsy with a learning disabilitySection titled Epilepsy%20with%20a%20learning%20disability

For an adult who has had epilepsy since childhood, sometimes alongside a learning disability or cerebral palsy that carries on into adult life, the family may know the seizures better than anybody. The Epilepsy Society notes that seizures may be more frequent or longer for some people with a learning disability, and that side effects of medicines can be hard to tell apart from their usual behaviour. NICE asks for coordinated care from a multidisciplinary team, and for information in easy read or other formats. Our guide to care at home for adults with a learning disability covers the wider arrangement.

Finding a carer who will learn the planSection titled Finding%20a%20carer%20who%20will%20learn%20the%20plan

What matters in a carer here is that they will read the plan, follow it and be trained where training is needed, which is easier with the same carer every time. You can search for carers near you and compare their rates, and ask each one about their experience of epilepsy, which is for you to check. Before a carer appears, PrimeCarers checks their identity, their right to work and an enhanced DBS issued within the last 18 months, and interviews them online. Every visit booked through PrimeCarers is insured, either by the carer's own policy or by cover PrimeCarers arranges where they do not hold one.