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EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

EPILEPSY HEALTH SERVICES REPORT Epilepsy Action wanted to find out about healthcare services for people with epilepsy to see where improvements are being made and where gaps still exist. In 2017, we made FOI requests to 244 health boards and provider trusts in the UK. Of those, 236 responded (97%). A total of 143 (61%) said that they provide a diagnostic, outpatient or ANXIETY AND EPILEPSY OCD Action - Tel: 0300 636 5478. OCD UK - Tel: 03332 127 890. Rethink Mental Illness - Tel: 0300 5000 927. If you would like to see this information with references, visit the Advice and Information references section of our website or contact our Epilepsy Action freephone helpline on 0808 800 5050. CARING FOR SOMEONE WITH EPILEPSY AND A LEARNING DISABILITY The link between epilepsy and learning disabilities and guidelines for treatment. Things to help avoid injury inside and outside the home. Also sudden unexpected death in epilepsy and how to reduce the risks. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We EPILEPSY AND EMPLOYMENT The Epilepsy Action Helpline offers information, advice and support on a range of issues, including employment. As well as offering advice for employees, our trained advisers can advise employers wanting to learn about epilepsy. Call the Epilepsy Action Helpline on 0808 800 5050, or email helpline@epilepsy.org.uk. DISABLED PERSONS RAILCARD AND EPILEPSY RENEW YOUR EPILEPSY ACTION MEMBERSHIP Alternatively you can: Pay by credit / debit card or Paypal. Contact our team at membership@epilepsy.org.uk or call +44 (0)113 210 8810 to discuss alternative ways to pay. If you currently pay for, or would like to buy, an increased level of personal accident insurance, please call the membership team on 0113 210 8810. Your email address *. TRANSITION FROM PAEDIATRIC TO ADULTS’ SERVICES Open: Transition from children's to adults' services, NICE Guidance, or The Walton Centre transition animation Transition from children's to adults' services Children and young people with epilepsy may have to negotiate more hurdles and obstacles than their peers when making important future plans and decisions. Epilepsy Action Transition from paediatric to adults’ services MENOPAUSE AND HORMONE REPLACEMENT THERAPY About hormone replacement therapy (HRT) HRT involves using hormone treatment to control the hot flushes and night sweats that some women experience during the menopause. It is helpful for women who find that the symptoms of the menopause are worsening their EPILEPSY ACTION CYMRU In Wales approximately 32,000 people have epilepsy. Epilepsy can affect anyone at any age and from any walk of life. Services include: Raising awareness and increasing understanding of epilepsy. Lobbying and campaigning for a better future for people with epilepsy. Representing the voice of people with epilepsy in Wales at strategic

bodies.

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

bodies.

HISTORY OF EPILEPSY ACTION: 1950-2010 For thousands of years people didn’t understand what epilepsy was. They were scared of it and they treated anyone with epilepsy as an outcast. More knowledge and understanding in the first half of the 20th century meant that attitudes began to improve. But change was slow and life was still very hard for most people with epilepsy. Epilepsy Action History of Epilepsy Action: 1950-2010 EPILEPSY HEALTH SERVICES REPORT Health services in the UK for people with epilepsy are not good enough. While some people receive high quality healthcare to help manage their epilepsy, others receive a poor service which does not meet their needs. This can mean long waiting times, limited access to epilepsy specialists and unplanned hospital admissions. It means that there are some people with epilepsy experiencing seizures CARING FOR SOMEONE WITH EPILEPSY AND A LEARNING DISABILITY The link between epilepsy and learning disabilities and guidelines for treatment. Things to help avoid injury inside and outside the home. Also sudden unexpected death in epilepsy and how to reduce the risks. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We COVID-19 AND PHYSICAL ACTIVITY AND MENTAL HEALTH SURVEY Study title COVID-19 and physical activity and mental health survey What’s it about? Researchers are hoping to better understand the impact of COVID-19 and government restrictions on the physical activity and mental health of adults living with long term conditions in the UK. The aim of this study is to assess the impact of physical distancing/self-isolation/shielding on physical activity MEMORY PROBLEMS AND EPILEPSY This information has been adapted from the booklet Memory and epilepsy, produced by Epilepsy Action and written by Professor Gus Baker and colleagues at the University of Liverpool.It has been updated by Epilepsy Action’s advice and information team, with input from people living with epilepsy. EASY READ EPILEPSY INFORMATION FOR PEOPLE WITH A LEARNING Easy read epilepsy information and audio files for people with learning disabilities and epilepsy to read online or download. SELF-LIMITING AND PHARMACORESPONSIVE FOCAL EPILEPSY IN There is little information about this epilepsy syndrome. The International League Against Epilepsy includes self-limiting and pharmacoresponsive focal epilepsy in infancy within the syndromes called ‘self-limiting familial infantile seizures’ and ‘self-limiting infantile seizures (non-familial)’. BEAUTY TREATMENTS AND EPILEPSY Treatments using lasers. Treatments using lasers include laser hair removal, laser skin resurfacing and laser tattoo removal. If you don’t have photosensitive epilepsy, there’s no reason why laser treatment would trigger a seizure. If you have photosensitive epilepsy, you may wish to check with the salon if the light used in

the treatment

GOING TO COLLEGE OR UNIVERSITY If you have epilepsy and you’re thinking about going to college or university it’s a good idea to plan ahead and think about the support you might need. You might be entitled to financial and practical support to help you get the most out of your studies. This information will help you ask the right questions and get the right

things in place.

PUBLIC HEALTH ENGLAND REPORT HIGHLIGHTS INCREASING RATE OF Public Health England (PHE) has found that death rates in people with epilepsy have risen by 70% between 2001 and 2014. This is compared to a 6% drop in deaths overall over that period.

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

BENEFITS FOR PEOPLE WITH EPILEPSY Access to Work. If your epilepsy affects your ability to do your job or means you have to pay work-related costs, Access to Work grants can help pay for practical support. Attendance Allowance. A benefit to help with personal care if you have a disability and have reached state pension age. Blue Badge scheme. EPILEPSY HEALTH SERVICES REPORT Health services in the UK for people with epilepsy are not good enough. While some people receive high quality healthcare to help manage their epilepsy, others receive a poor service which does not meet their needs. This can mean long waiting times, limited access to epilepsy specialists and unplanned hospital admissions. It means that there are some people with epilepsy experiencing seizures SAFETY ADVICE FOR PEOPLE WITH EPILEPSY Safety advice for people with epilepsy. Cymraeg. This information looks at possible risks in and outside the home if you have epilepsy. It describes how to do a safety check. It covers how you approach risk and how to help yourself feel more confident about going out. Finally it offers some practical tips on staying safe wherever you are. RENEW YOUR EPILEPSY ACTION MEMBERSHIP Alternatively you can: Pay by credit / debit card or Paypal. Contact our team at membership@epilepsy.org.uk or call +44 (0)113 210 8810 to discuss alternative ways to pay. If you currently pay for, or would like to buy, an increased level of personal accident insurance, please call the membership team on 0113 210 8810. Your email address *. BONE HEALTH AND EPILEPSY These pages are about bone health and epilepsy in the UK. If you are looking for information about osteoporosis and epilepsy in another country, please contact your local epilepsy organisation. Epilepsy Action would like to thank Dr Aza Abdulla, Consultant Physician, Princess Royal University CORONAVIRUS (COVID-19) AND EPILEPSY Last reviewed 29 April 2021. Does having epilepsy put me at increased risk from coronavirus? A recent study published in the British Medical Journal suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from

coronavirus.

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

coronavirus.

SEIZURE ACTION PLANS, RISK ASSESSMENTS AND REASONABLE Alternatively, it might mean working a particular shift pattern, or working longer hours on some days with time off on others. Reasonable adjustments have to be reasonable to the employer and to you. Many reasonable adjustments involve little or no cost. If there are costs involved, funding might be available from Access to Work. WEST SYNDROME (INFANTILE SPASMS) BENIGN MYOCLONIC EPILEPSY IN INFANCY SAFETY ADVICE FOR PEOPLE WITH EPILEPSY Safety advice for people with epilepsy. Cymraeg. This information looks at possible risks in and outside the home if you have epilepsy. It describes how to do a safety check. It covers how you approach risk and how to help yourself feel more confident about going out. Finally it offers some practical tips on staying safe wherever you are.

SEIZURE TRIGGERS

Here are some of the seizure triggers that have been reported by people with epilepsy: Not taking epilepsy medicine as prescribed. Feeling tired and not sleeping well. Stress. Alcohol and recreational drugs. Flashing or flickering lights. Monthly periods. Missing meals. COVID-19 AND PHYSICAL ACTIVITY AND MENTAL HEALTH SURVEY Study title COVID-19 and physical activity and mental health survey What’s it about? Researchers are hoping to better understand the impact of COVID-19 and government restrictions on the physical activity and mental health of adults living with long term conditions in the UK. The aim of this study is to assess the impact of physical distancing/self-isolation/shielding on physical activity EPILEPSY ACTION'S INFORMATION QUALITY STANDARDS 1. We follow a strict process to make sure all our information meets the same, high standards. This process makes sure that the end product is accurate, balanced, easy to read and easy to understand. 2. We use the best available evidence. We base all our information on evidence taken from sources that are robust, credible and reliable. SEIZURE ACTION PLANS, RISK ASSESSMENTS AND REASONABLE Alternatively, it might mean working a particular shift pattern, or working longer hours on some days with time off on others. Reasonable adjustments have to be reasonable to the employer and to you. Many reasonable adjustments involve little or no cost. If there are costs involved, funding might be available from Access to Work. MEMORY PROBLEMS AND EPILEPSY This information has been adapted from the booklet Memory and epilepsy, produced by Epilepsy Action and written by Professor Gus Baker and colleagues at the University of Liverpool.It has been updated by Epilepsy Action’s advice and information team, with input from people living with epilepsy. PEOPLE WITH EPILEPSY ARE INCLUDED IN PRIORITY GROUP 6 OF People with epilepsy are included in priority group 6 of the COVID-19 vaccine roll-out, Epilepsy Action has confirmed. This comes after the organisation received a number of questions around priority groups for epilepsy, and heard about contradicting information being given by

some GPs.

EPILEPSY AND EMPLOYMENT The Epilepsy Action Helpline offers information, advice and support on a range of issues, including employment. As well as offering advice for employees, our trained advisers can advise employers wanting to learn about epilepsy. Call the Epilepsy Action Helpline on 0808 800 5050, or email helpline@epilepsy.org.uk. SAFETY AIDS AND EQUIPMENT Safety aids and equipment. There are many products available to help people living with epilepsy. Find out more about the different types of aids and equipment, including where you can buy them and possible sources of funding. Epilepsy Action does not endorse any LIVING WITH EPILEPSY AND A LEARNING DISABILITY SUDEP. People with epilepsy and a learning disability are more likely to die early than other people. So it’s especially important, for you as a carer, to know about sudden unexpected death in epilepsy (SUDEP). Here is the NICE guideline that underlines that: 1.16.3.7 Healthcare professionals should be aware of the higher risks of

mortality

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

ANXIETY AND EPILEPSY Panic attacks. Some people get sudden, intense episodes of anxiety called panic attacks. Symptoms of panic attacks include feelings of fear, nervousness, a fast heartbeat, flushing skin, sweating, deja vu and very fast breathing. EPILEPSY HEALTH SERVICES REPORT Health services in the UK for people with epilepsy are not good enough. While some people receive high quality healthcare to help manage their epilepsy, others receive a poor service which does not meet their needs. This can mean long waiting times, limited access to epilepsy specialists and unplanned hospital admissions. It means that there are some people with epilepsy experiencing seizures SEIZURE ACTION PLANS, RISK ASSESSMENTS AND REASONABLE Information on care plans, risk assessments and reasonable adjustments for people with epilepsy at work EPILEPSY AND EMPLOYMENT Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare, fund research and campaign for change. RENEW YOUR EPILEPSY ACTION MEMBERSHIP Thank you for choosing to renew your membership with Epilepsy Action! As well as spreading the cost of your subscription across the year, you can help us save vital funds on administration by setting up a Direct Debit. Payments can be taken from your account monthly or annually. Alternatively you can: DISABLED PERSONS RAILCARD AND EPILEPSY GOING TO COLLEGE OR UNIVERSITY To be 16 is to be at an exciting crossroads in your life. Should you stay on at school, go to college, apply for an apprenticeship or start planning for going to university? MENOPAUSE AND HORMONE REPLACEMENT THERAPY These pages are about women and epilepsy in the UK. If you are looking for information about women and epilepsy in another country, please contact your local epilepsy organisation Epilepsy Action would like to thank Dr Janine Winterbottom, advanced nurse specialist in epilepsy at

the Walton Centre

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

the Walton Centre

EPILEPSY ACTION CYMRU Prif gyswllt Epilepsy Action yng Nghymru yw Jan Paterson, rheolwr Cymru. Mae Jan yn gweithio ar draws Cymru yn datblygu ac yn cefnogi gwasanaethau cymunedol Epilepsy Action Cymru. CHILDHOOD EPILEPSY SYNDROMES What is a syndrome? A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they experience difficulties with learning.

VIRTUAL GROUPS

Virtual groups from Epilepsy Action are a great way to connect with others who have experiences of epilepsy, in a safe and relaxed environment. Attend a virtual meeting Our virtual groups are open to anyone in the UK who is over 18. You might be living with epilepsy yourself, or you might be a parent or carer of someone living with

epilepsy.

disadvantage.

CORONAVIRUS (COVID-19) AND EPILEPSY Last reviewed 29 April 2021. Does having epilepsy put me at increased risk from coronavirus? A recent study published in the British Medical Journal suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from

coronavirus.

MEMORY PROBLEMS AND EPILEPSY This information has been adapted from the booklet Memory and epilepsy, produced by Epilepsy Action and written by Professor Gus Baker and colleagues at the University of Liverpool.It has been updated by Epilepsy Action’s advice and information team, with input from people living with epilepsy. GOING TO COLLEGE OR UNIVERSITY To be 16 is to be at an exciting crossroads in your life. Should you stay on at school, go to college, apply for an apprenticeship or start planning for going to university? BEAUTY TREATMENTS AND EPILEPSY We’re not aware of any specific warnings about using botox when you have epilepsy, but the British National Formary (BNF) does advise caution for people with neurological disorders. If you are looking into getting botox, we would advise making sure you use a qualified and trained healthcare practitioner and discuss any concerns with them

first.

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

BARNSLEY 10K

Brand new for 2021, the Epilepsy Action Barnsley 10K is a closed road, chip timed run suitable for all abilities. "It's wonderful to have such a fantastic new running event coming to Barnsley. It's a great, undulating, out and back course. Having taken part in Epilepsy Action events before, they are always well organised and I'm sure the people TOPIRAMATE AND CONTRACEPTION Natural birth control. Note: the makers of topiramate say that if you take 200mg or less daily, some hormonal contraception may be effective in preventing pregnancy. If you take topiramate and want to consider hormonal contraception, to avoid an unplanned pregnancy, please check with your GP, epilepsy specialist or epilepsy specialist nurse. EPILEPSY ACTION SHOP Buy T-shirts, wristbands, epilepsy information booklets and many other items from the Epilepsy Action shop

EPILEPSY ACTION

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare and campaign

for change.

BARNSLEY 10K

EPILEPSY TRAINING

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare, fund research and campaign for change. Epilepsy Action is the working name of British Epilepsy Association, a registered charity in England and Wales (No. 234343) and a company INFORMATION FOR PEOPLE NEWLY DIAGNOSED A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The result is an epileptic seizure. There are many different types of

seizure.

ANXIETY AND EPILEPSY OCD Action - Tel: 0300 636 5478. OCD UK - Tel: 03332 127 890. Rethink Mental Illness - Tel: 0300 5000 927. If you would like to see this information with references, visit the Advice and Information references section of our website or contact our Epilepsy Action freephone helpline on 0808 800 5050. MY STORY | EPILEPSY ACTION Everyone’s epilepsy story is unique, and sharing your story helps others know they are not alone. These are inspiring stories; of being diagnosed, over-coming challenges, fundraising and much, much more. Please share your story too. Love me, cajole me, comfort and console me, anything is welcome

SEIZURE TRIGGERS

families.

WEST SYNDROME (INFANTILE SPASMS) The combination of the infantile spasms, age of onset and EEG pattern defines the epilepsy syndrome called, ‘West syndrome’. It is called this after Dr William West, who first described the condition in his 4-month-old son in 1841. West syndrome happens in about one in 2,500-3,000 children. This means that about 350-400 children will

HARROW BRANCH

Miller and Carter Steakhouse, Leefe Robinson,Uxbridge Road, Harrow, HA3 6DL, United Kingdom Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. We give advice, improve healthcare, fund research and campaign for change. Epilepsy Action is the working name of British LAMOTRIGINE AND CONTRACEPTION The possible effect of the combined oral contraceptive pill, contraceptive patch and vaginal ring on your lamotrigine and your epilepsy. The Pill, patch and vaginal ring may reduce the amount of lamotrigine in your bloodstream. This would make you more at risk of having seizures. So your doctor may need to increase the amount of

lamotrigine you

HEADGEAR, PILLOWS, PRAMS AND DOGS Headgear, pillows, prams and dogs. Epilepsy Action cannot recommend any of the companies or products listed on this page. Protective headgear. Protective headgear can be helpful if you need to protect your head during seizures.

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