Epilepsy Support

For many people, one of the greatest challenges of living with a low-grade glioma is coping with seizures. Finding the right balance of anti-convulsant medications can take a while to establish and is likely to need to be changed a number of times over the years. Whilst some GPs are experienced in this field, it is usually best to ensure that your medication is reviewed at least annually by the Neurologist at your hospital. If you notice a change in your seizure pattern at any time, it will be worth asking for an appointment. A vital key worker for you will be your Epilepsy Nurse Specialist at the hospital; if you are not sure who this is, do ask.

When you attend an epilepsy clinic, it is helpful to have somebody with you who has seen you have a seizure and can accurately describe what happens. Keeping a seizure diary (a note of when and what happens) is also very useful.

Epilepsy Society supplies a wide range of information and support services. Their UK Helpline is open 10am-4pm, Monday to Friday, on 01494 601 400.

Epilepsy Action has an extensive network of branches throughout the UK which provide local support to people with epilepsy, their family and friends and professional carers. Run by volunteers, most branches hold regular meetings and offer a mixture of social events and informative talks and discussions for both adults and teenagers with epilepsy.
Helpline: 0808 800 5050

Schemes to help you feel more secure when you are by yourself

Some people are concerned that they may have a seizure and be misdiagnosed by an ambulance crew, if one is called to attend.

The Medic Alert Foundation can supply you with a tag to go on a necklace or a wristband, which gives a very brief outline of your medical condition. There is also a telephone number on the tag for paramedics to call in order to discover more details about you such as emergency contact details, treatment centre, medications and so on.
Tel. 0207 833 3034 or freephone 0800 581 420
Website: www.medicalert.org.uk

Medical ID Alert is another company who also provide a brief outline of your medical condition on a tag for a necklace or bracelet, backed up by an Online Medical Registry.
Tel. 0800 055 6504
Website: www.universalmedicalid.co.uk

MediPAL® is a plastic card the size of a credit card, to fit in your purse or wallet.  It is printed with details of the medicines you are taking, your GP’s contact details, and emergency contact details for your family. You simply submit your medical history to the company and they send you a personalized card. You can update your card at any time online and a new card will be created and sent out immediately. You can also display the MediPAL® logo in your car or at your front door to let people know that they can find your medical history if they need to.
Tel. 0845 603 4604
Website: www.medipal.org.uk

East Anglian Ambulance Service have launched a national “In case of Emergency (ICE)” campaign. The idea is that you store the word “ICE” in your mobile phone address book, and against it enter the number of the person you would want to be contacted “In Case of Emergency”. In an emergency situation ambulance and hospital staff will then be able to quickly find out who your next of kin are and be able to contact them by accessing your mobile phone.

If you are concerned about being left alone at home you may want to consider having a Lifeline Alarm Unit or a Piper Alarm Service fitted in your house. Usually used for older people, they are also available for you if you have seizures and may need medical assistance. The Alarms consist of a button which you can wear around your neck and press to alert the Operator and Mobile Warden Service that you need help. There are private versions available, but the least expensive option is probably to contact the Welfare Officer at your local council and ask for an assessment. The cost varies between areas but would be a weekly charge, which includes having the unit installed and all the support services that go with it. To find the number of your local council, use yellow pages or www.yell.com