Your information
If you would like to find out what happens to personal information held about you, please read the your personal information section on our privacy policy page for more information.
Who we are
We are a team of specialist nurses with expertise in the care and treatment of epilepsy supported by our administrative team. We offer a service to clients across Kent and Medway.
We provide a link between the person with epilepsy, the consultant neurologist and the GP or practice nurse giving advice and monitoring medicine changes.
What do we offer and how can we help?
We provide education, advice and support to empower our clients, relatives and carers to manage their condition. Our goal is to achieve optimal seizure control.
We offer assessments and support via video or telephone appointment and we will offer you a face-to-face appointment if we need to see you at a local clinic or your home.
At your first appointment, we will complete an assessment of your epilepsy and help you understand all you need to know about being newly diagnosed and the on-going management of epilepsy. We share explanations and information on investigations and treatment options. We also provide lifestyle advice including maintaining good seizure control and first aid information to keep you safe. We help you to identify triggers for seizures, advise on managing and preventing prolonged seizures and share support and advice in special situations, for example pregnancy and rescue medication guidelines.
If you meet the referral criteria, we will offer you a follow up appointment. If you do not meet the criteria we may make onward referrals to other services or providers to support you further.
We would like to offer you a video or telephone appointment with one of our team. We will be able to let you know the different options available to you when you call in to book your appointment.
If able, we would encourage you to accept a video call which will allow you to meet and see your clinician. You will need a desktop, laptop, tablet or smartphone with a good connection to the internet, a private area where you will not be disturbed and a web camera, speakers and microphone.
There is no need to create an account and no information about you is stored on the video system. You can find out more information about video calls on our virtual appointment advice page.
We regularly signpost our clients to the following resources. We would recommend taking a look to support you in letting us know what is important to you as well as thinking about what you would like to get out of your first appointment. We can provide communication support or information in different formats. Please tell us as soon as possible, or ask someone to tell us on your behalf, before your appointment, if you need any support, including the following:
- an interpreter, a British Sign Language (BSL) interpreter, or information in another language
- information in large print, Braille, Easy Read (using pictures) or audio.
Epilepsy Society
www.epilepsysociety.org.uk
Epilepsy Society is the leading charity for epilepsy research and support. The website provides information and education; take a look at What is epilepsy? and the Living with epilepsy pages which cover a wide variety of topics and what help and support you could be entitled to. Want to hear more from other people living with epilepsy? Take a look at the Personal stories page to read some real-life experiences.
Epilepsy Action
www.epilepsy.org.uk
Epilepsy Action is a charity that aims to improve the lives of everyone affected by epilepsy. You can speak to trained advisers via the Epilepsy Action Helpline. The website provides advice and information; take a look at the Driving, Benefits and Safety pages. There are also links to the epilepsycast, Epilepsy Today magazine, an online forum and local support groups for people with epilepsy, their family, friends and carers.
SUDEP Action
www.sudep.org
SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. They aim to provide information on SUDEP and risks in epilepsy, offering support when someone has dies, involving people to help effect change, sponsor research and education and capture data across the UK and internationally through the Epilepsy Deaths Register.
Help Kent and Medway
www.helpkentandmedway.co.uk
The Help Kent and Medway is a free NHS funded service that provides counselling and talking therapies. Therapy can help you accept your diagnosis, support with phobias and also provide you with strategies to manage stress and anxiety. Take a look at their interactive map of Kent to find services in your local area.