Talking about your epilepsy
In a fast moving world where communication is instant, time to really talk and be heard is rare. But sharing your anxieties can make a real difference. Epilepsy society's Helpline manager Christine Brock explains how dialling their number can be the first step for people in taking control of their epilepsy and control of their lives.
‘Many people with uncontrolled seizures feel they have few choices in life. They don’t know when a seizure will happen. They may not be able to work or drive because of the nature of their epilepsy. Even claiming benefits is something which is determined by a third party, someone who will appraise their life and decide what their entitlement is or maybe isn’t.
‘But making the decision to call us, especially if you are at a low ebb, can prove a big boost to your self confidence. The minute you pick up the phone, you are taking control. To say “This is my choice, I am going to talk about my epilepsy or I am going to find out about something that is worrying me” can actually be very empowering.
Dealing with daily challenges
‘We are not about helping people, or advising them what to do, we are about empowering them to help themselves and to make sense of their situation. We provide time and a safe place to sort through feelings and emotions; a place to stop fears from spiralling out of control; a place to get some sort of perspective on the daily challenges that people with epilepsy often face.
‘Many people who call us will never have spoken to anyone other than a healthcare professional about their epilepsy or the epilepsy of a loved one. And internalising problems can have a devastating impact.
‘Sharing with someone who is there solely to listen to you can be quite emotional but we are warm, relaxed and non-judgemental. We have time to give. Talking through issues can help to make people feel validated and understood.
Need to talk
'The Helpline takes an average of 600 calls a month. Calls come from those who are newly diagnosed, from people who have been living with epilepsy for perhaps 20 years or more and suddenly find they need to talk, from friends and carers of people with epilepsy and from healthcare professionals.
'Issues range from worries about benefits - especially if someone has had their application turned down - to concerns about medication, side effects, loneliness and employment. The Helpline team is knowledgeable about all the information produced by Epilepsy Society and can talk through different issues with callers. If necessary we will also signpost to other organisations.
'The Helpline is both confidential and caller led. Our operators don’t record or share the names or details of anyone who calls. If a caller requires information through the post, their contact details won’t be kept on file after the information has been sent out. Calls are charged at the national rate but being caller led means the caller can talk for as long as they wish.
'Listening is an active, not a passive skill. You cannot truly listen if you are doing anything else at the same time. Consequently the team doesn’t use computers to access information for callers during a conversation. When you call the Helpline you will have the full attention of trained and experienced staff.
'The team is not medically trained and cannot answer specific medical questions but they have a deep understanding of the condition and the impact that it can have on a person’s life and those around them.
Calls from healthcare professionals
‘It really helps people to explore their own lives and situation with someone who understands epilepsy, the unpredictable nature of seizures and the complexities of living with perhaps memory problems or anxiety and depression.
‘We also get regular calls from epilepsy specialist nurses, neurologists, social workers and employers. Often they are grateful for a chance to talk about issues in complete confidence so that they can then give their patient or employee the best support possible.
‘Every call is different but underpinning them all is a need for human support, time and a listening ear. And that is what we provide.’
Epilepsy Society Helpline 01494 601400
Wednesday 9am to 8pm
Confidential. National call rate.
What you can expect to hear if you call Epilepsy Society’s helpline
You will hear the following message during opening hours. You will not be asked to select a keypad option but will be put straight through to a Helpline operator. If all the lines are busy, please try again.
‘You have reached the Epilepsy Society Helpline. Limited calls will be recorded for training purposes only and will remain confidential within the Helpline.
The Helpline is open from 9am to 4pm on Monday to Friday and till 8pm on Wednesday evenings. The Helpline is closed on bank holidays and twice a year for staff training.
Please hold while I try and connect you.’
If you would like to talk to the Helpline using a different language, please ask for the language line.
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