Adult Epilepsy Specialist Nurse Team

Bathing

It is advised that having a shower is safer due to the risk of drowning if a seizure occurs whilst in the bath. Always leave the door unlocked and if able keep the door open. Consider changing your bathroom door so that it opens outwards and allows access if needed. Risk assessments and safety plans should be in place for those people being supported in commissioned services or services within the home. You may be entitled to a disabled facilities grant to help you adapt your home. Find out more and refer yourself.

Driving

Epilepsy Action Helpline 0808 800 5050 is an excellent resource for general driving questions. Please also refer to the GOV.UK website for all DVLA driving regulations regarding epilepsy. If you are informed not to drive, it is your responsibility to notify the DVLA and voluntarily surrender your driving license.

For information on how to apply for your driving license please see the website above, or if you are having difficulties with a delay after applying for your licence, please contact the DVLA directly on 0300 790 6801 or online.

If you need to enquire about DVLA forms sent to your neurologist, please contact their secretary.  Epilepsy nurses are not involved in the DVLA process.

Work/school/college/university

Make sure colleagues and friends are aware of your epilepsy diagnosis, they can support you in the event you have a seizure: What to do when someone has a seizure.

• Take a look at the Epilepsy Action website for more information. 
• Employers can find more information here, including details on reasonable adjustments that should be made.
• Access to Work Scheme – contact Jobcentre Plus or see here for more information. Reasonable adjustments are required first.

Osteoporosis

It is important to ensure adequate calcium and vitamin D within your diet. Please check the Epilepsy Action website for more information. Some epilepsy medications can increase the risk of fractures because they interfere with Vitamin D metabolism. You can take an NHS quiz to assess your risk of osteoporosis. Please discuss with your GP if you have concerns.

Benefits

Please refer to the Epilepsy Action website for more information about benefits. The Epilepsy Action Helpline 0808 800 5050 can also help with any questions relating to benefits.

You are only required to forward supporting evidence you already hold, evidence must be factual. For example, your epilepsy care plan and clinical letters from consultants are good examples of supporting evidence. The sssessor may contact our Adult Epilepsy Specialist Nurse team if they require further evidence.

The NHS has a contract with the Department of Work and Pensions to complete requests for further information when sent from the assessors. The assessors are looking at a person being able to undertake these tasks reliably, safely, repeatedly and to a satisfactory standard in a reasonable timescale. It will be helpful for you to ask for copies of clinic letters with healthcare professionals.

Always keep a copy of any application forms you submit. Your local citizens advice bureau can signpost you to local organisations who can provide support to complete your application form.

Useful documents:

• The Personal Independence Payment (PIP) toolkit - A guide to help organisations and people in support roles explain Personal Independence Payment (PIP) and changes to Disability Living Allowance (DLA) to claimants.
• PIP assessment guide part 1: the assessment process
• PIP assessment guide part 2: the assessment criteria

Entitlements

You are entitled to free prescriptions and should request exemption form FP92A from your GP. You may also be entitled to:

• Concessionary bus pass: You can apply for this if you are having seizures and would not be able to drive. See here for more information about concessionary bus passes. The pass will need to be renewed yearly and entitles you to free travel on all off-peak services (from 9:30am-11pm) Mon-Fri and at any time during weekends and bank holidays. Some rural services will accept travel before this time on weekdays.
• Rail Card: Entitles you to a 1/3 off travel along with a carer if relevant. There is an associated cost for this. See here for more information about the disabled persons railcard and reductions available:
• The CEA Card: (Cinema Exhibitors' Association) is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema. See here for more information. There is an associated cost for this.

Assistive technology (AT)

Advice provided on seizure alarms. Self-referral can be made to the AT Team by calling 0344 800 8020.  For commissioned services advice can be sort direct from AT by either phone or email: 0344 800 8020 assdassistivetechnology@norfolk.gov.uk

It is important that any AT equipment is tested and serviced in line with manufacturers recommendation. Further information is available through the Epilepsy Action website.

Apps

Useful apps we recommend are what3words, EpSmon and Medisafe. We also recommend setting up ICE contacts.

Sports

See this leaflet from Epilepsy Action on Sports and Leisure.

General safety

Epilepsy Action has a useful leaflet that looks at keeping you safe inside and outside the home.

Epilepsy courses and support

See the Epilepsy Action website for different courses that can be accessed (found if you search for "training for people with epilepsy").

Epilepsy and wellbeing

This free, 2-hour online course aims to teach you how to take simple steps to manage your epilepsy and improve your wellbeing. It covers the links between epilepsy and your wellbeing, seizure triggers, taking epilepsy medication, memory, and stress.      

First aid

This free online module covers all the different seizures and what to do in the event a seizure occurs.

Epilepsy Support Group

There is an Epilepsy Support group organised by Epilepsy Action which meets on the third Monday each month from 2pm until 3.30pm at Café Marzano (Millennium Library the Forum, 2 Millennium Plain, Norwich NR2 1TF).

You can book via Eventbrite, but if you have any difficulties doing this you can just arrive and the volunteers will help you book on when you are there.

Preconception counselling

We recommend that any pregnancy is planned and that before becoming pregnant you speak to your consultant neurologist to review your treatment. You will need to be prescribed folic acid 5mg once a day at this time. Please see the following website for more information. Please see here for more information.

Pregnancy

Epilepsy medicines and pregnancy:

• www.epilepsy.org.uk/living/having-a-baby/epilepsy-medicines-and-pregnancy

Epilepsy and Having a Baby – Epilepsy Action:

• www.epilepsy.org.uk/info/daily-life/having-baby
• www.epilepsy.org.uk/info/daily-life/safety/practical-guidance
• www.epilepsy.org.uk/info/caring-children

Epilepsy pregnancy register. Your valuable contribution will help doctors give the best advice possible to you and to other women who are thinking of becoming pregnant:

• www.epilepsyandpregnancy.co.uk

Medication

Take your medication as prescribed, missed doses can lead to seizure breakthrough. If you are having difficulties in remembering your medications, consider downloading the MEDISAFE app (free) which can provide reminders. If you are still having difficulties, please speak with your pharmacist who can refer you to the Norfolk Medicines Support Service if they are not able to help.

If your medication is prescribed to be taken twice daily there should be a twelve-hour gap between doses and if it is prescribed three times daily, it there should be a six-hour gap between doses. Any alterations to this should be discussed with your neurologist or epilepsy nurse.

If a dose is forgotten there is a four-hour window to take the medication, after this time you will need to wait until your next dose. If you run out of medication out of hours, you can call 111 who will be able to issue an emergency five-day prescription. You can also go to any dispensing pharmacy, provide your date of birth and they will be able to issue you with a five-day emergency prescription. Discuss repeat prescription options with the pharmacist. If there are difficulties in taking your epilepsy medications, please contact your GP/pharmacist straight away to avoid any missed doses. Please see below for what you can do if you have supply difficulties with your medications.

If when you collect your medications it looks different the pharmacy may have changed your brand.  Many people with epilepsy have no problems when switching between different versions of their medicine. But for some people, switching between different versions of their medicine could cause them to have an increase in seizures, or have a breakthrough seizure after being seizure free. The Medicines and Healthcare products Regulatory Agency (MHRA) has published guidance that puts epilepsy medicines into 3 categories, based on the risk that switching between brands could lead to seizures or side-effects. 

Please refer to this guidance for specific epilepsy medications.

Process map for problems gaining medication

Feeling unwell/high temperature

If your seizures increase this could be a sign of underlying infection e.g., dental infections, ear, nose and throat infections, cellulitis/pressure areas, chest infection, or urine infection. If you see signs of infection particularly if this is a known seizure trigger, please ensure you have a medical review with your GP.

Bladder and bowel

Constipation can affect the absorption of your epilepsy medication therefore it is important to avoid this. We would recommend monitoring your bowel movements and contacting your GP for advice if you encounter problems. Having an adequate fluid and fibre intake can support good bladder and bowel health unless otherwise indicated by a healthcare professional (e.g. fluids restrictions).

Sleeping

It is important to have a good sleeping pattern as sleep deprivation can be a trigger for a seizure. For further information please see:

• www.nhs.uk/every-mind-matters/mental-health-issues/sleep/
• https://thesleepcharity.org.uk/national-sleep-helpline/

Alcohol

Drinking small or modest amounts of alcohol is unlikely to make you have more seizures. But moderate to heavy drinking over a short space of time can make you more likely to have a seizure.  You are most at risk of having a seizure between 6 and 48 hours after you have stopped drinking.

• www.epilepsy.org.uk/info/daily-life/alcohol

Wellbeing

If you are experiencing a change to your wellbeing emotional issues, such as low mood, anxiety, depression or stress further support can be sought here or by speaking with your GP.

Flashing and flickering lights

Photosensitive epilepsy is rare and affecting just 3% of people with epilepsy.  It is a type of epilepsy in which seizures are triggered by flashing or flickering lights, or high contrasting patterns. Most people with photosensitive epilepsy also have seizures at other times. Some people only have seizures that are triggered by flashing or flickering lights, or high contrasting patterns. Any type of seizure could be triggered, however, tonic-clonic seizures are the most common. There are several ways to reduce the risk of a seizures occurring. Click here for more information.

Menstrual cycle

You might have more seizures than usual at certain times in your menstrual cycle. This could be at the start of your period, around the middle of your cycle (when you ovulate) or in the week before your period. When changes in the hormones that control your menstrual cycle cause you to have more seizures, it’s called catamenial epilepsy. It is important to record your seizures in your diary and if you notice an increase in seizures each month because of your menstrual cycle you can either contact your Epilepsy Nurse to discuss or wait and speak with your Neurologist.

Missing meals

Some people report seizures triggers due to missing meals. It is important to eat regular meals to avoid fluctuations in your blood sugar levels.

Top tips for managing your epilepsy

Keep a seizure diary that includes the date, time, duration of your seizures. It is also helpful to write down exactly what happened before, during and after your seizures and if there were any triggers.

• Epilepsy Action
• Epilepsy Society

If you are having an increase in seizures and this is due to identifiable triggers, increasing your medication will not help. It is important to think about your triggers and lifestyle putting in place a way of managing these.

When you have an appointment with your Epilepsy Nurse or Consultant Neurologist ensure you have your seizure diary, list of medications and any questions you want to ask them.

Keep your epilepsy care plan in a safe place where you can access it and where others know where it is. If you are unable to keep a copy with you take a picture and have a copy on your phone. 

It can be really helpful for your Consultant and Epilepsy Nurse to view videos of your seizures. Please see this website for information about how to do this.

Seizure diary

• Keeping a seizure diary can help monitor seizure activity, this would include the date, time, and duration. It is also helpful to write down exactly what happened before, during and after your seizures and if there were any triggers.
  • Epilepsy Action
  • Epilepsy Society
• If you are having an increase in seizures and this is due to identifiable triggers, increasing your medication will not help. It is important to think about your triggers and put in place a way of managing these.
• Keep your care plan safe so that you can access it and others know where it is. If you are unable to keep a copy with you take a picture and have a copy on your phone. 

Appointment with a Consultant Neurologist or Epilepsy Specialist Nurse

When you have an appointment with your Epilepsy Nurse or Consultant Neurologist ensure you have your seizure diary, list of medications and any questions you want to ask them ready.

Sudden Unexpected / Unexplained Death in Epilepsy

SUDEP (Sudden Unexpected / Unexplained Death in Epilepsy) is a rare risk, there are changes that you can make to reduce the risk further as explained above. For information about how to reduce your risks and take control; Tel 01235 77285 or visit SUDEP Action.

You can also download a free app for smartphones. EpSMon helps you assess your personal risk factors and tells you how to reduce your risk.

Additional areas of support available from epilepsy charities

• Epilepsy Action. Helpline 0808 800 5050 is very good for advice on benefits, driving and employment, Monday - Saturday
• Epilepsy Society. Helpline 01494 601 400 Monday, Tuesday and Wednesday, provides more of a listening service providing more emotional support.
• The Epilepsy Space

Support for patients with a learning disability

Social Support

Mental Health

What to do in a mental health crisis

What do I do if I feel my mental health has changed suddenly, I am in crisis and I experience despair or am suicidal?

• Telephone First Response on 0808 196 3494
• If you feel you are in crisis, experiencing feelings of despair, or are suicidal, contact the Samaritans on 116 123
• You can also call your GP

Charities

Stroke

Stroke society - https://www.stroke.org.uk/

Stroke Helpline 0303 3033 100 please see website for opening times

Email helpline@stroke.org.uk

Brain tumour

National Brain Tumour Society - https://braintumor.org/

The brain tumour society aims to discover a cure, deliver treatments and advocate for patients.

Encephalitis

Encephalitis Society - https://www.encephalitis.info/

Support line 01653 699599

Traumatic brain injury

Headway - https://www.headway.org.uk/about-brain-injury/individuals/types-of-brain-injury/traumatic-brain-injury/

Helpline 0808 800 2244

Email helpline@headway.org.uk

Other

Support for non-epileptic seizures

The charity FND Action provides information support for anyone diagnosed with non-epileptic seizures and is also termed as functional neurological disorders. It also includes along with videos on a variety of topics:

• What is Functional Neurological Disorder (FND)
• Function seizures
  • What causes them
  • How they are diagnosed
  • How people are affected
  • How they are treated
• Living with FND
• Support available

FND Guide is an international patient-run registered charity for patients with functional neurological disorders:

In addition to up-to-date information, this site - created by a group of healthcare professionals interested in developing effective treatments for non-epileptic attacks - contains many self-help ideas and suggestions about what you should or shouldn't try doing in the self-help guides.

Sexual abuse

• www.norfolk.gov.uk/safety/domestic-abuse/how-to-get-help/help-following-sexual-abuse

• www.suelamberttrust.org/
• 01603 622406
• info@suelamberttrust.org