Adult Epilepsy Specialist Nurse Team

Safety and daily living

Bathing

• Showers are generally safer than baths due to the risk of drowning if a seizure occurs.
• Always leave the bathroom door unlocked and keep it open if possible.
• Consider changing the door to open outwards for easier access in an emergency.
• If you're supported by a commissioned service or care provider, a risk assessment and safety plan should be in place.
• You may be eligible for a Disabled Facilities Grant to help adapt your home. You can refer yourself for this.

General safety

Epilepsy Action has a helpful leaflet on staying safe at home and outdoors.

Living safely

Epilepsy Action: https://www.epilepsy.org.uk/living/safety-equipment/medical-id-products 

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Driving

• For general driving advice, contact the Epilepsy Action Helpline: 0808 800 5050.
• You must notify the DVLA if you are advised not to drive.
  • To report epilepsy to the DVLA: Report your condition
  • To reapply for your licence: Reapply for your licence
• DVLA Medical Enquiries: 0300 790 6806
  • Monday to Friday, 8am to 7pm
  • Saturday, 8am to 2pm
• If you have questions about DVLA forms sent to your neurologist, contact their secretary (details are on your care plan).
• Epilepsy nurses are not involved in the DVLA process.

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Work and education

• Let colleagues and friends know about your epilepsy so they can support you if you have a seizure. What to do when someone has a seizure.
• Employers must make reasonable adjustments. More information for employers.
• Access to Work Scheme: Contact Jobcentre Plus or visit Access to Work.
• Disability Employment Advisors can support you if your condition affects your ability to work.

Jobcentre Plus contact details:

• Telephone: 0345 606 0234
• Textphone: 0345 605 5255
• Welsh language: 0345 606 7890
• Monday to Friday, 8am to 6pm

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Health and wellbeing

Osteoporosis

• Some epilepsy medications can affect vitamin D levels and increase fracture risk.
• Ensure you get enough calcium and vitamin D.
• Take the NHS osteoporosis risk quiz and speak to your GP if concerned.

Epilepsy and wellbeing

A free 2-hour online course is available to help you manage epilepsy and improve wellbeing. It covers:

• Seizure triggers
• Medication
• Memory
• Stress

First aid

This free online module is available covering seizure types and what to do in an emergency.

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Benefits and entitlements

Benefits

• Visit Epilepsy Action's benefits page or call 0808 800 5050 for advice.
• Use existing evidence such as your care plan and clinic letters.
• The NHS may be contacted by the DWP for further information.
• Keep copies of all application forms.
• Your local Citizens Advice Bureau can help with applications.

Useful documents:

• PIP toolkit
• PIP assessment guide - Part 1
• PIP assessment guide - Part 2

Entitlements

• Free prescriptions: Request exemption form FP92A from your GP.
• Concessionary bus pass: Available if you're unable to drive due to seizures.
• Disabled Persons Railcard: 1/3 off travel for you and a companion.
• CEA Card: Free cinema ticket for a companion.

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Assistive technology (AT)

Advice is available on assistive technology options and assessment:

• Self-referral: Call 0344 800 8020

For commissioned services:

• Phone: 0344 800 8020
• Email:  assdassistivetechnology@norfolk.gov.uk

For existing assistive technology equipment and servicing, call Enable on 01603 894120. 

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Apps and technology

Recommended apps:

• what3words - for location sharing in emergencies
• EpSmon  - seizure monitoring
• Medisafe  - medication reminders
• Set up ICE (In Case of Emergency) contacts on your phone

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Sports and leisure

See Epilepsy Action's sports and leisure leaflet.

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Support and Resources

Epilepsy courses and support

Visit Epilepsy Action's training page for free and paid courses.

Epilepsy Support Group

• Meets on the third Monday of each month, 2pm to 3:30pm
• Café Marzano, Millennium Library, The Forum, Norwich 
• Book via Eventbrite or just turn up - volunteers can help you register on arrival.

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Family planning

Preconception counselling

If you're planning a pregnancy, it's important to speak to your consultant neurologist before trying to conceive. They can review your treatment and make any necessary adjustments to your medication.

You should also be prescribed folic acid 5mg once a day, which helps reduce the risk of neural tube defects.

• NHS guidance on epilepsy and pregnancy
• Epilepsy Action: Fertility and planning a baby

Pregnancy

Pregnancy can affect epilepsy in different ways. Some people experience no change, while others may have more frequent seizures. It's important to continue taking your medication unless advised otherwise by your specialist.

Useful resources:

• Epilepsy medicines and pregnancy
• Epilepsy and having a baby
• Practical safety guidance during pregnancy
• Caring for children

Epilepsy Pregnancy Register

You can help improve care for others by joining the Epilepsy Pregnancy Register. Your contribution helps doctors understand the effects of epilepsy medicines during pregnancy.

• Join the register

Contraception

Some epilepsy medicines can affect how well contraception works. It's important to speak to your GP or epilepsy specialist about the best options for you.

• Contraception and epilepsy - Epilepsy Action
• iCaSH - Integrated Contraception and Sexual Health services

Medication

• Always take your medication exactly as prescribed. Missing doses can lead to breakthrough seizures.
• If you struggle to remember your medication, try using the  Medisafe app (free) for reminders.
• Speak to your pharmacist if you need help-they can refer you to the Norfolk Medicines Support Service.

Timing your doses:

• Twice daily: 12-hour gap between doses
• Three times daily: 6-hour gap between doses
• If you miss a dose, you have a 4-hour window to take it. After that, wait for your next scheduled dose.

Running out of medication:

• Call NHS 111 for an emergency 5-day prescription.
• You can also visit any dispensing pharmacy with your date of birth to request an emergency supply.
• Discuss repeat prescription options with your pharmacist.

Medication supply issues:

• If your medication looks different, the pharmacy may have changed the brand. For some people, switching brands can lead to increased seizures or side effects.
• The MHRA groups epilepsy medicines into three categories based on the risk of switching brands.
• Please refer to this guidance on switching epilepsy medicines.

Need advice?

Epilepsy Action offers a medication advice and support helpline: 0808 800 5050

Process map for problems gaining medication

 

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High or low body temperature 

• Infections (e.g. dental, ENT, chest, or urinary) can trigger seizures.
• If you feel unwell and this is a known trigger, contact your GP for a review.
• NHS: Fever in adults
• Recognising illness
• Staying cool in hot weather (see advice for managing your epilepsy section) 

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Feeling unwell or nauseous

If you notice symptoms of nausea, you can see advice from your GP pharmacist. If you vomit within 1 hour of taking medication and you can tell that you have vomited them up (you can see the medication), you can take another dose of your medication once vomiting has stopped.

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Bladder and bowel health

• Constipation can affect how your medication is absorbed.
• Maintain good hydration and fibre intake unless advised otherwise.
• Monitor bowel movements and speak to your GP if you have concerns.
• NHS: Constipation
• Bristol Stool Chart

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Sleep

• Sleep deprivation is a common seizure trigger.
• Aim for a consistent sleep routine.
• NHS: Sleep and mental health
• The Sleep Charity

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Alcohol and recreational drugs

• Small amounts of alcohol may not trigger seizures, but binge drinking increases risk - especially 6 to 48 hours after drinking.
• Recreational drugs can interfere with seizure control and medication.
• Epilepsy and alcohol - Epilepsy Action
• Talk to Frank - Drug advice
• Epilepsy Society: Alcohol and drugs
• NHS: Calculating alcohol units

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Wellbeing and mental health

• Stress, anxiety, low mood, and depression can all affect seizure control.

Mental Health Support

Get advice from 111 or ask for an urgent GP appointment if: 

• you need urgent help for your mental health 

Get help from 111 online or call 111 and select the mental health option.

Call 999 or go to A&E now if: 

• someone's life is at risk - for example, they have seriously injured themselves or taken an overdose or seizures are prolonged as per epilepsy care plan 
• you do not feel you can keep yourself or someone else safe 

A mental health emergency should be taken as seriously as a physical one.  

Call: 999

Other ways to get help with your mental health

Free listening services

These services offer confidential support from trained volunteers. You can talk about anything that's troubling you, no matter how difficult: 

• Call 116 123 to talk to Samaritans, or email: jo@samaritans.org for a reply within 24 hours
• Text "SHOUT" to 85258 to contact the Shout Crisis Text Line, or text "YM" if you're under 19
• If you're under 19, you can also call 0800 1111 to talk to Childline. The number will not appear on your phone bill. 

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Photosensitive epilepsy

 Affects around 3% of people with epilepsy.

• Triggered by flashing lights or high-contrast patterns.
• Tonic-clonic seizures are the most common type triggered.
• More on photosensitive epilepsy - Epilepsy Action

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Menstrual cycle

• Hormonal changes can trigger seizures (catamenial epilepsy).
• Track your cycle and seizures in a diary.
• Contact your epilepsy nurse or neurologist if you notice a pattern.

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Missing meals

• Skipping meals can cause blood sugar fluctuations, which may trigger seizures.
• Eat regular meals and stay hydrated (6-8 glasses of fluid daily unless advised otherwise).
• Diet and epilepsy - Epilepsy Society
• NHS: Water, drinks and your health

Seizure diary

• Keep a seizure diary: Record date, time, duration, and what happened before, during, and after.
  • Keeping a seizure diary - Epilepsy Action
  • Seizure diaries - Epilepsy Society
• Bring your diary and medication list to appointments.
• Store your care plan somewhere accessible-consider keeping a photo on your phone.
• Video your seizures (if safe) to help your care team.
  • How to film seizures - Epilepsy Action

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Appointment with a consultant neurologist or epilepsy specialist nurse

When attending your appointment, please bring:

• Your seizure diary
• A list of your current medications
• Any questions you would like to ask

If your appointment is for an Emergency Medication Epilepsy Care Plan review, the following documents will be sent with your appointment letter:

• Appointment information
• Emergency Medication Epilepsy Care Plan

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Sudden unexpected / Unexplained Death in Epilepsy (SUDEP)

SUDEP is a rare risk, but there are steps you can take to reduce it. For more information and guidance on managing your risk:

• Call SUDEP Action: 01235 77285
• Visit: SUDEP Action website

You can also download the EpSMon app for smartphones. It helps you assess your personal risk factors and provides advice on how to reduce your risk.

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Hot weather

Staying cool: hot weather and epilepsy

• Epilepsy Action:  https://www.epilepsy.org.uk/news/stay-cool-hot-weather-and-epilepsy 

Staying safe in the heat - Advice from Epilepsy Society 

• Epilepsy Society: https://epilepsysociety.org.uk/news/keep-your-cool-staying-safe-heat

How to cope in hot weather - Advice from the NHS

• https://www.nhs.uk/live-well/seasonal-health/heatwave-how-to-cope-in-hot-weather/  
   
  How to cope in hot weather and stay safe - Advice from the government:
• https://www.gov.uk/government/publications/beat-the-heat-hot-weather-advice/beat-the-heat-staying-safe-in-hot-weather  

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Additional support from epilepsy charities

Epilepsy Action

• Helpline: 0808 800 5050
• Available Monday to Saturday
• Offers advice on benefits, driving, employment, and general epilepsy support
• Visit Epilepsy Action

Epilepsy Society

• Helpline: 01494 601 400
• Available Monday, Tuesday, and Wednesday
• Offers emotional support and a listening service
• Visit Epilepsy Society

The epilepsy nursing service can provide training to individuals and parents or carers who do not receive commissioned support.

If you have been prescribed emergency medication, you must have an Emergency Medication Epilepsy Care Plan. This plan is reviewed every year.

Epilepsy nurses give carers instructions on the individual's care plan. This includes information about:

• the type of emergency medication prescribed
• when and how to give it

The epilepsy nursing service is not commissioned to provide epilepsy or emergency medication training to commissioned services such as:

• care homes
• supported living environments
• personal assistants
• non-profit voluntary sector organisations

Local companies offer this training. The epilepsy nursing service cannot recommend specific providers, but they are easy to find online.

The Epilepsy Specialist Nurse Association (ESNA) provides a competency checklist you can use:

• Epilepsy Action
• Epilepsy Society
• ESNA Midazolam Guidelines
• ESNA Competency Framework

Confidentiality during training

During training, remember that the content of any Emergency Medication Epilepsy Care Plan is confidential. It contains personal patient information.

Only review the document with a member of the epilepsy specialist nurse team or another healthcare professional providing direct care.

Buccal midazolam information

If you have been prescribed buccal midazolam, you can find more information here:

• Epistatus - for patients and carers
• Buccolam - Neuraxpharm UK

Support for patients with a learning disability