• Adult Epilepsy Specialist Nurse Team

    Adult Epilepsy Specialist Nurse Team

    The Adult Epilepsy Specialist Nurse (ESN) service supports people with epilepsy. We work with you to co-create a personalised care plan, so you have the advice and guidance to manage your condition and know what to do in an emergency.

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.

Seizure information and first aid


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.
  • 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

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

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


Assistive technology (AT)

Advice is available on seizure alarms.

  • Self-referral: Call 0344 800 8020

For commissioned services:

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 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.

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

Process map for problems gaining medication


Feeling unwell or fever


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


Alcohol and recreational drugs


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.


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

Advice for managing your epilepsy

Seizure diary


Appointment with a consultant neurologist or epilepsy specialist nurse

When attending your appointment, please bring:

  • Your seizure diary
  • 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:

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


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


Charities and condition-specific support

Stroke

Brain tumour

Encephalitis

Traumatic brain injury

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
  • 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

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.