FOR PARENTS / CARERS

Welcome to the parent and carers information page of the South East Thames Paediatric Epilepsy Group (SETPEG). The Parents Information leaflet is designed to help you think about what information you need from health professionals working with you and your child. It also lists helpful and reliable sources of information about epilepsy and services. It contains a lot of useful links to other websites for parents, carers, children and young people. By following these links we hope you will be able to find information about a wide range of topics related to the different types of epilepsy, including care, first aid, treatments and education. Some of these links can also be found below.

You are of course welcome to browse the pages within this site but most of the other information is designed for neurologists, paediatricians, specialist nurses and other professionals working with children and young people with epilepsy.

Please note; It is with regret SETPEG cannot offer advice to individual queries about a child’s treatment or management. We recommend you contact your child’s primary paediatrician or GP in the first instance.

If you need more immediate advice contact NHS direct www.nhsdirect.nhs.uk or by dialling 111 or 0845 4647 from some areas.

Information for Children and Young People

The leaflet on this page is written for parents and carers, but you may also find it useful to have a look at and jot down any question you have. You could print the leaflet off and take it along to your next appointment when you meet your Doctor or Nurse.

Resources for parents and carers

 

  • BPNA (British Paediatric Neurology Association) – the professional organisation for doctors who specialise in the care of children with neurological disorders.
  • Dravet Syndrome UK – an independent UK charity dedicated to improving the lives of children and adults living with Dravet Syndrome.
  • Epilepsy 12 – A national three-year audit to help improve patient outcomes and the quality of care and service provided.
  • Epilepsy Action – A community of people committed to a better life for everyone affected by epilepsy.
  • Epilepsy Society – a comprehensive resource of information regarding Epilepsy.
  • Genetics and Epilepsy – this link above gives nice explanation of the role of genetics in epilepsy
  • ILAE (International League Against Epilepsy) – the world’s preeminent association of epilepsy health professionals.
  • Joint Epilepsy Council – an umbrella charity providing the representative voice working for the benefit of people affected by epilepsy.
  • Matthews Friends – a UK charity specialising in medical Ketogenic Diet therapies.
  • Medicines for Children – medication information sheets to download
  • NICE (National Institute for Health and Clinical Excellence)
  • Young Epilepsy – a national charity supporting children and young people with epilepsy.
  • VNS Therapy – information about Vagus Nerve Stimulation therapy

 

Other National & Regional Networks

 

Scotland & Ireland

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