Bedfordshire Community Epilepsy Specialist Nurse Service

Bathing

Having a shower is advised because it is safer due to the risk of drowning if a seizure occurs while 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 would allow access if needed. It is advisable that risk assessments and safety plans are in place for those people being supported in commissioned services or services within the home.

Driving

Epilepsy Action Helpline 0808 800 5050 is an excellent resource for general driving questions. Please also refer to the GOV.UK website for more information about regulations relating to driving and epilepsy, including information about applying for your driving licence.

If you are having difficulties with a delay after applying for your licence please contact the DVLA direct on 0300 790 6801 or online.

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

Work/school/college/university

If colleagues and friends are aware of your epilepsy diagnosis they can support you if you have a seizure: What to do when someone has a seizure.

See Epilepsy Action for useful information and resources about being a young person with epilepsy at school, college, university and work.

Useful information for employers can be found here, including details on reasonable adjustments.

Access to Work Scheme – contact Jobcentre Plus or visit GOV.UK for more information. Reasonable adjustments are required first.

Contraception/family planning

Epilepsy itself is a condition for which there are no restrictions on the use of contraceptive methods, but restrictions may apply if certain antiepileptic drugs (AED) are used. It can be overwhelming to try and choose which method of contraception is best. Here are some resources that may help:

Epilepsy Action

Epilepsy Society

To ensure healthy future pregnancies we advise you to have pre-conception counselling. This is an appointment with a medical professional, for example your Epilepsy Specialist Nurse, GP, or Neurologist. This is to review your epilepsy and epilepsy medications and ensure you are on the safest drugs for you and your future baby.

Further information:

Epilepsy Action

Epilepsy Society

Osteoporosis

It is important to ensure adequate calcium and vitamin D within your diet. Please refer to Epilepsy Action's resources on Osteoporosis and Epilepsy for more information. Some epilepsy medications can increase the risk of fractures because they interfere with Vitamin D metabolism. Patients can undertake an NHS quiz to assess their risk of osteoporosis. Please discuss this with your GP if you have concerns.

Benefits

Please see here for more information on benefits.

There is also the Epilepsy Action Helpline 0808 800 5050 who can help with any questions relating to benefits. Although we are unable to provide individual supporting letters this seizure care plan can be used as supporting evidence as it will detail your diagnosis and how your epilepsy affects you.

It will be helpful for you to ask your neurologist for a copy of their clinic letters, which may also be sent as evidence. Always keep a copy of the application forms you send for reference. Your local Citizen’s Advice Bureau can signpost you to a local organisation that can support completing your application forms.

Entitlements

You may be entitled to the following entitlements, for which we can provide a letter of support if required.

You are entitled to free prescriptions.; Request exemption form FP92A from your GP.

A concessionary bus pass 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. You can apply for this if you are having seizures and would not able to drive. See here for information about restrictions on the use of bus passes. See here for information about the Disabled Persons Railcard and the reductions available. The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables disabled cinema guests to receive a complimentary ticket for someone to go with them when they visit a participating cinema.

Assistive technology (AT)

Bedford Borough: Please email telecare@bedford.gov.uk for self-referral or contact your health professional

Central Bedfordshire: A referral through a professional is required.

Apps

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

General safety

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

Epilepsy courses

We recommend exploring the Epilepsy Action website for different courses that can be accessed.

Epilepsy and Wellbeing is a free 2-hour online course that 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.      

Epilepsy and You is a free online self-management course that gives people the skills to manage their epilepsy. The course is designed to be done over 8 weeks, taking about 2 hours per week.

First aid. This free online module covers the different types of seizures and what to do when a seizure occurs.

Medication

Take your medication as prescribed, missed doses can lead to seizure breakthrough. If you are having difficulties 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 GP hours, you can call 111 who will be able to issue an 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.

When you collect your medication, if it looks different the pharmacy may have changed the brand. Many people with epilepsy have no problems when switching between different versions of their medicine. But for some people, this 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.

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 an appropriate practitioner e.g. GP

Bladder and bowel

Becoming constipated can impact on the absorption of your epilepsy medication therefore it is important to avoid this. We would advise 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.

Alcohol/drugs

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. The use of recreational drugs may not only trigger seizures but can also increase the frequency as well as interact with other medication you may be prescribed. Please see here for further advice and support.

Wellbeing

If you are experiencing a change to your wellbeing or emotional issues, such as low mood, anxiety, depression or stress further support can be found through the wellbeing service (https://www.elft.nhs.uk/bedfordshire-talking-therapies) or speaking with your GP.

Flashing and flickering lights

Photosensitive epilepsy is rare and affects just 3% of people with epilepsy. It is a type of epilepsy in which seizures are triggered by flashing or flickering lights, or highly contrasting patterns. Most people with photosensitive epilepsy also have seizures at other times. But some people only have seizures that are triggered by flashing or flickering lights or high contrasting patterns. Any type of seizure could be triggered, but tonic-clonic seizures are the most common. There are several ways to reduce the risk of 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.

Social Support

Central Bedfordshire Social Services - 0300 300 8301

Bedford Borough Social Services- 01234 718700

Carers Needs Assessment: The assessment looks at the impact that caring has on your life. It's used to identify advice and assistance, tailored to you, that can support you in your role as a carer while also managing your own health and wellbeing.

Carers in Bedfordshire

https://carersinbeds.org.uk/

Providing support and advice for carers on a range of topics that affect daily life.

Mental Health

Samaritans - 116 123

Whatever you're going through, a Samaritan will face it with you. Available 24 hours a day, 365 days a year.

Shout – Text 85258

https://giveusashout.org/

UK's free, confidential, 24/7 text support service. It's a place to go if you're struggling with loneliness, self-harm, suicidal thoughts, anxiety or depression, stress and even abuse.

Anxiety UK - 03444 775 774

Text 07537 416 905 (can take up to 1 working day to respond)

Offer support, advice and information on all anxiety, stress and anxiety-based depression conditions.

Wellbeing - 01234 838771

yourwellbeingbedfordshire.org.uk

The Wellbeing Service offers help and support to improve wellbeing and manage stress, low mood, and anxiety. We aim to reduce the onset of mental ill-health, prevent deterioration, and promote recovery by offering a range of flexible services tailored to specific needs.

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 111 and press option 2

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

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.

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.