Bristol Epilepsy Social Support Group

Bristol Epilepsy is a social support group in Bristol, that offers support to people and their families whose lives are affected by Epilepsy and Seizures.


Welcome to Bristol Epilepsy

Bristol Epilepsy is a social support group that offers support to people and their families whose lives are affected by Epilepsy and Seizures.

Coronavirus News :

Bristol Epilepsy Support Group – are now following NHS guidance regarding the Coronavirus.

OUR MEETINGS HAVE BEEN CANCELLED

Our meetings in April, May and June 2020 – are all cancelled due to the Coronavirus (COVID-19)

We shall update you soon, when possible, with new dates.

Epilepsy and the coronavirus (COVID-19) FAQs

Dr Simona Balestrini is the Muir Maxwell Research Fellow at the Epilepsy Society. Here, she has put together an FAQ factsheet for those with epilepsy about the coronavirus (COVID-19).

Please note that the guidance around coronavirus is changing on a daily basis. We will update this page on a regular basis and will be sharing the latest information via Facebook and Twitter. Please also refer to the following sites for the latest information.

www.nhs.uk/conditions/coronavirus-covid-19/


1. Do I have a higher risk of getting the coronavirus if I have epilepsy?

There is currently no evidence of increased risk of coronavirus infection in people with epilepsy compared to the general population. The risk is increased in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.The Government has included people with chronic neurological conditions in their ‘at risk’ groups. However, they have not specified epilepsy.  While those whose seizures are well controlled may not be at any greater risk than the rest of the population, those with uncontrolled seizures and particularly seizures triggered by fever or infection, may be more vulnerable. We suggest everyone takes stringent measures to follow the Government guidelines on social distancing and self isolation. If you have concerns please contact your GP or epilepsy specialist.

2. Do people with epilepsy have a weakened immune system?

There is no evidence that people with epilepsy have a weakened immune system, therefore they should not be considered ‘immunocompromised’ or to have an ‘immune deficiency’. Obviously, there are individual differences, e.g. some people with epilepsy might have a weakened immune system due to co-existing other health conditions and associated immunosuppressive treatment.

3. Does treatment with antiepileptic medications increase the risk of coronavirus infection?

There is no evidence of increased risk of coronavirus infection in people taking antiepileptic medications. Therefore, it is important to keep taking your epilepsy medicine as usual throughout any illness.

4. What should I do to avoid the infection?

There are a number of measures that might help in reducing the risk of infection. These include: avoid close contact with people who are unwell; hand hygiene (wash hands with soap and water, or use alcohol hand gel, often, especially after using public transport and at any time before eating); cover the mouth and nose when coughing or sneezing with a tissue or a sleeve; try to avoid touching your eyes, nose or mouth if your hands are unclean. Try to keep healthy by following a nutritious diet and taking gentle exercise. Keep your home well ventilated by keeping the window open.

5. What should I do if I have symptoms?

At present, it is recommended to stay at home for 7 days if you have either a high temperature, or a new persistent cough and you live alone. If you live with others and you, or one of them, have symptoms, then the whole household must stay at home and not leave the house for 14 days. This will help protect others in the community while people are infectious. Please follow the advice from Public Health England (PHE) which is updated daily: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public. If you do become unwell and suspect you could have coronavirus, use the NHS 111 coronavirus service or ring 111 for advice.

Most cold medicines that you might consider for symptom relief (typically paracetamol to control fever or muscle aches) are fine.  But take advice before using products containing diphenhydramine (such as Benadryl). Just check the label before purchasing any products. If in doubt, check with your GP or epilepsy specialist.

6. Are people with epilepsy likely to be more severely affected by coronavirus than the general population?

We do not have any information at the moment that would suggest people with epilepsy are likely to be affected more severely by the coronavirus. Public Health England has produced  guidance around those  people who are considered to be at greater risk. Although this includes some neurological conditions, epilepsy is not currently included. We are in contact with the Department of Health and PHE and are seeking further clarification on this. For most people, coronavirus should only result in mild symptoms, and they should recover within  a few days. 

7. Is coronavirus likely to trigger a seizure?

There is currently no evidence to suggest that coronavirus will trigger seizures in people with epilepsy. However, infections, fever (particularly in children), sleep deprivation and in general being unwell can trigger seizures in some people with epilepsy. If you are in this category, please take extra measures to social distance or self isolate and call your GP or epilepsy specialist if you are concerned.

8. Do I need any specific treatment if I catch coronavirus?

You should be able to reduce any flu symptoms with over the counter medications.  Sometimes doctors may recommend other treatments such as antivirals, antibiotics or other specific treatment.  Occasionally these may interact with your epilepsy medication, reducing their effectiveness or resulting in side effects.  It is important to let your doctor know which anti-epileptic medications you are taking, the type of preparation and the dose. 

9. Will the situation with coronavirus lead to shortages of my epilepsy medicine?

The Department of Health and Social Care is working hard toreduce any impact of coronavirus on drug supplies and we meet with them on a regular basis so that we can bring you  the latest updates. In the run up to Brexit, drug manufacturers were asked to ensure a minimum of six weeks supply of medications. These stockpiles are still in place which should help to avoid any shortages if there are subsequent disruptions to the supply chain. We provide regular updates on our homepage and via our social media channels. As always, the advice is not to stockpile your medication in case you have to self-isolate. This could cause shortages of medications and put others at risk of a seizure. It is best to carry on as normal.

10. If I have to self-isolate how will I get my medicines?

The NHS is currently advising people who may have been exposed to coronavirus to self-isolate. Just in case you need to do this, you may wish to think now about how you would get your medicines.  You may wish to ask someone  to pick up your prescriptions for you. Or you could call your pharmacy to find out whether they arrange home deliveries. If they offer this service you should ask how you could sign up to it. Most prescriptions are now signed, sent and processed electronically.

Make sure you are registered for online services through your GP. This will enable you to book, check or cancel appointments online and order repeat prescriptions. Take your prescription to your pharmacy in plenty of time – up to seven days before you need your medication. This will allow your pharmacist to call other pharmacies or suppliers if there are any delays in getting your medication. Ordering your prescription in good time will also enable you to visit another pharmacy if your own pharmacy is temporarily closed due to the coronavirus.


More About Our Epilepsy Support Group :

Our meetings are somewhere to chat in a relaxed atmosphere. It’s a chance to get together each month to socialise and discuss how living with Epilepsy and Seizures affects us.

We talk about Awareness, Stigma, Medications (AEDs), Welfare and other subjects. We invite specialists in Epilepsy/Seizures and other Neurological Conditions – professionals in the field of Healthcare and Academics to come and talk at our monthly meetings. In each of their case the speaker’s aim is to share their experience and knowledge, to help face the challenges that epilepsy can create.

Epilepsy is a very common neurological disorder – that’s 1 in 100 people in the UK, 1 in 25 people in the USA – figures that make the amount of people affected by Epilepsy worldwide is over 65+ Million People (that’s more than HIV !) who will have a seizure in their lifetime.

Epilepsy affects people of all ages, Children and Adults alike. March the 26th of each year is known as ‘Purple Day’ and is celebrated around the world. But why Purple ? Purple / Lavender is the awareness colour for Epilepsy.

All our meetings are open for Children, Young Adults, Adults, and Family’s. The venue is Disability Friendly and is Accessible. 

This #Epilepsy group is based in Bristol, SW England – it is supported by Southmead Hospital Charity, North Bristol NHS Trust and Tap2Tag Medical ID.

The meetings are held on the 1st Tuesday of the month. Please check the CALENDAR for dates and times of our next meeting.

FOLLOW US ON TWITTER AND FACEBOOK :

www.twitter.com/BristolEpilepsy

www.facebook.com/BristolEpilepsy

Website Credits : We would like to thank Sam Downie for maintaining this site, that’s built upon WordPress – which YOU too can use for FREE via this link . Sam adds news, podcast, videos and links to latest research in Epilepsy, Seizures and other co-morbidities.