How to contact us
Opening hours:
Monday to Friday, 8.30am to 4.30pm
Phone: 01603 216021
Email: epilepsynurses@nchc.nhs.uk
Areas we cover
We support patients across Norfolk, including:
- North Norfolk
- South Norfolk
- West Norfolk
- Norwich City
Who can refer to us
- Consultant neurologists
- GPs
- Learning disability teams
- Health and social care professionals
What we do
We support people aged 16 and over who have a confirmed diagnosis of epilepsy.
We work closely with hospital neurology departments and GPs to provide joined-up care. Our support includes:
- Discussing lifestyle, medication, and epilepsy management
- Creating a personalised epilepsy care plan, including seizure types, triggers, risks, safety advice, and first aid
- Providing specialist advice to health and social care teams
- Signposting to services for welfare and accessibility
- Offering support and advice to colleges, universities, and employers
How we contact you
We can offer support in a range of ways, including:
- Telephone calls
- Virtual appointments
- Home visits (where appropriate)
Referrals
Please send referrals to:
Norwich Central Hub
Norwich Community Hospital
Bowthorpe Road
Norwich
NR2 3TU
Or email: centralbooking@nchc.nhs.uk
Support letters
We're unable to provide supporting letters. However, your epilepsy care plan can be used as evidence of your condition and how it affects you.
You can also include:
- Clinic letters from your consultant neurologist (available from their secretary)
- Correspondence from other healthcare professionals
For guidance on benefits, visit Epilepsy Action.
To request a copy of your care plan, call us on 01603 216021.
Seizure information and first aid
Before your appointment with the Epilepsy Specialist Nurse team, you can read our Seizure Information and First Aid leaflet. It gives an overview of different types of seizures and what to do in an emergency.
Living with epilepsy
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.
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.
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
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.
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:
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.
Assistive technology (AT)
Advice is available on seizure alarms.
- Self-referral: Call 0344 800 8020
For commissioned services:
- Phone: 0344 800 8020
- Email: assdassistivetechnology@norfolk.gov.uk
Ensure all equipment is tested and serviced regularly.
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
Sports and leisure
See Epilepsy Action's sports and leisure leaflet.
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.
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.
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.
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
Common seizure triggers
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
Feeling unwell or fever
- 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
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
Sleep
- Sleep deprivation is a common seizure trigger.
- Aim for a consistent sleep routine.
- NHS: Sleep and mental health
- The Sleep Charity
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
Wellbeing and mental health
- Stress, anxiety, low mood, and depression can all affect seizure control.
- Speak to your GP or epilepsy nurse for support.
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
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.
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
Advice for managing your epilepsy
Seizure diary
- Keep a seizure diary: Record date, time, duration, and what happened before, during, and after.
- 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.
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:
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.
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
Further support
Support for patients with a learning disability
- Visit the Community Learning Disabilities Team for more information and support.
Social Support
- Norfolk Social Services: 0344 800 8020
- Carers Needs Assessment: Helps identify support tailored to your role as a carer.
- Norfolk Swift Response: 0344 800 8020
- 24-hour urgent support at home (non-emergency).
- Carers Matter Norfolk: 0800 083 1148
Mental health support
Samaritans: 116 123 (24/7 support)
Shout: Text 85258 - https://giveusashout.org/
Anxiety UK:
- Phone: 03444 775 774
- Text: 07537 416 905
Wellbeing Service (Norfolk): 0300 123 1503
In a mental health crisis
- First Response: 0808 196 3494
- Samaritans: 116 123
- Contact your GP
Charities and condition-specific support
Stroke
- Stroke Association
- Helpline: 0303 3033 100
- Email: helpline@stroke.org.uk
Brain tumour
Encephalitis
- Encephalitis Society
- Support line: 01653 699599
Traumatic brain injury
- Headway
- Helpline: 0808 800 2244
- Email: helpline@headway.org.uk
Support for non-epileptic seizures
- FND Action: http://www.fndaction.org.uk/
- Information and videos on functional neurological disorders (FND), including:
- What FND is
- Functional seizures
- Diagnosis and treatment
- Living with FND
- Information and videos on functional neurological disorders (FND), including:
- FND Guide: A patient-led charity offering self-help resources and treatment guidance. https://neurosymptoms.org/en/
- This website was created by a group of healthcare professionals interested in developing effective treatments for non-epileptic attacks.
Support following sexual abuse
- Norfolk County Council: Help following sexual abuse
- Sue Lambert Trust:
- https://www.suelamberttrust.org/
- Phone: 01603 622406
- Email: info@suelamberttrust.org
- Self-help resources
Social Prescribing
A social prescriber (also known as a link worker or community connector) helps improve health and wellbeing by connecting people with community-based activities and services.
What they do:
- Link people to local groups and services (e.g. gardening, arts, support groups)
- Address non-clinical needs like loneliness, housing, or financial concerns
- Create personalised care plans
- Work with GPs and community organisations
- Support and grow local community groups
How to access:
Contact your GP surgery directly to request an appointment with a social prescriber.
Help with health costs
If you're referred to hospital or other NHS premises for specialist NHS treatment or diagnostic tests by a doctor, dentist or another primary care health professional, you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS). Find out more about the HTCS.
How are we doing?
The quality of our services and the experience of our patients is what counts, so we regularly ask you to tell us if you’re satisfied with the care you’ve received and how we can further improve our services. You can read more about our commitment to encouraging patients to share feedback about their experiences on our patient experience page.