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Provision of care
Questions from healthcare professionals
Q: Are there epilepsy specialists working in Wales and England?
A: There are epilepsy specialists working in the UK. For a list of specialist epilepsy centres and services see the useful addresses tab on this website and look under 'Epilepsy clinics -Adults' and 'Children'. Epilepsy Information Services.
August 2008
Q: I am a Pharmacist working for a group of GPs. We planning to set up an annual epilepsy review clinic in the surgery. Do you have any information to help us start a clinic?
A: You might like to look at the National Institute for Health and Clinical Excellence (NICE) guidelines: 'The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care'. These Clinical guidelines were written in October 2004 and they set out what should be done in an annual review. You can find the guidelines on the NICE website by searching for 'epilepsy'.
October 2007
Q: Has any research been done or any thresholds generally established concerning the point at which people with intractable epilepsy would need to be cared for in specialist residential care rather than in their own home?
A: This depends on individual assessment of need and whether suitable alternatives to residential care are available. We are not aware of any research in this area.
February 2006
Q: I work in a prison and we have a lot of female inmates who are epileptic. We are keen to provide these inmates with the best of care. Can you advise regarding a care-plan approach for patients living with epilepsy, support we can provide from within the prison, and further referral to services on leaving the prison and going back to the community.
A: Inmates with epilepsy should have the opportunity to access local neurology services, including those specifically for people with epilepsy. If there are a number of inmates with epilepsy it might be possible to arrange for a local epilepsy nurse to be released to visit them. Care plans can be devised in consultation with the neurologist who will have knowledge of each individual’s epilepsy. If inmates are able to make phone calls, they may find it helpful to contact Epilepsy Society's epilepsy helpline, which offers information and listening support. It is open Monday to Friday, 10am to 4pm and the number is 01494 601400. Once inmates have been released, registration with the local GP will ensure continuity of medication, and referrals can also be made to neurology services in the area where the person will be living. More information on these issues can be found on this site in Library of articles. There is also useful information in the NICE guidelines and other reports, which can be accessed from the links page on this site.
May 2005
Q: National guidelines currently being produced for the care and management of people with epilepsy mention 'specialists in management of epilepsy' or 'specialist epilepsy services.' Not all state the definition of these terms and those that do are very broad. Is there a universal UK definition of these terms?
A: No, there is no clear definition.
January 2005
Q: How many epilepsy specialists are there in the UK?
A: In the UK there are around 320 consultant neurologists. Of these, around 30 have a special interest in epilepsy.
November 2004
Q: With the new GP contract in mind how best do we investigate/manage patients who are not seizure free for more that 12 months without inundating secondary services unnecessarily?
A: Recent best practice guidelines recommend that patients are fully involved in all aspects of their epilepsy management and decision-making. Therefore each patient’s situation should be considered on an individual basis with them, and a decision made as to whether it is a priority for them to be referred. The GP toolkit for epilepsy states that ‘patients should be referred to a specialist for review of their epilepsy if seizures are persisting’. Other possible reasons for referral are also discussed in the toolkit. The SIGN guidelines also contain best practice recommendations.
November 2004
Q: How much training in epilepsy do neurologists receive?
A: This depends very much on how long ago they finished their training. Since 1999 those in training should get at least four months experience.
November 2004
Q: Do you routinely counsel about sudden unexpected death along with the discussion of other general issues when diagnosing epilepsy and commencing medication? Are there any information leaflets that include this topic?
A: There is no consensus about when to inform people about SUDEP, even among medical professionals specialising in epilepsy. The decision about how and when to talk about SUDEP may also depend on the individual and their particular circumstances. Epilepsy Society's leaflet ‘Epilepsy: Risk’ includes information on SUDEP. You can view copies online or order them from the Epilepsy Society shop.
October 2004
Please note: Epilepsy Society is unable to provide a medical opinion on specific cases. Responses contain information relating to the general principles of investigation and management. Answers are not, and should not be assumed to be, direct medical advice.
