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Two of Epilepsy Action's objectives are to raise awareness in our target audience about epilepsy and about us and our work, and to bring about permanent change for the social and medical benefit of people with epilepsy.

Below you can find more information on the various campaigns that Epilepsy Action is currently running, as well as campaigns we have run recently.

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Automatic substitution of anti-epileptic drugs (updated 5 February 2010) ›

Comments

Re. Free Bus Passes

I am on Incapacity Benefit due to epilepsy, although I am not considered qualifying for DLA. However, because I only have seizures in my sleep once every lunar month I am also in posession of a full (3 year) driving licence.

If I were in receipt of DLA I would automatically be entitled to a Free Bus Pass, similarly if I were to be refused a driving licence on medical grounds.

The problem is that being on such a limited income there is no way I would be able to afford to run a car with the prohibitive insurance premiums alone, to say nothing of the other running expenses, such as tax, fuel & general maintainance.

I believe the government should be lobbied to extend the qualifying conditions to entitle anyone in similar situation to one of the Free Buss Passes.

Submitted by Jerry Gamble on 6 December, 2008 - 08:28.

My adult daughter has tonic-clonic seizures which are normally well controlled with Sodium Valproate. Her consultant is currently changing her to Lamotrigine, for sound medical reasons. The changeover is taking place gradually. However, the changing dose of Lamotrigine does not appear to be communicated to my daughter's GP, instead, she is expected to remember the dose and regime. Her drug packets are simply marked "To be taken as prescribed". Recently, she was admitted to a hospital away from her home town after several days of dizziness, nausea and nystagmus, which had been misdiagnosed as labyrinthitis. Her condition rapidly deteriorated to the point where she was unable to walk, stand or sit upright. Her dizziness became so severe that she needed to wear a blindfold to prevent any vision and she was unable to tolerate anything by mouth. In addition, she began to suffer bizarre seizures which appeared similar to tonic-clonic seizures, except she was fully conscious thoughout. For two days she gradually deteriorated, until the consultant neurologist recognised her condition as the result of an overdose of Lamotrigine. After retrieving her notes from her home-town hospital, it transpired that she had been taking 6 times the correct dose, due to a misinterpretation of instructions.

Fortunately, once the error was corrected, she recovered quickly and is now well again. Until there is a robust system of communication between consultants and GPs, accidents like this are bound to occur. Even intelligent, educated patients like my daughter cannot be expected to memorise a changing regime which is not committed to writing or communicated to their GP. I wonder if anyone else has had a similar experience?

Submitted by Annabel Lloyd on 27 May, 2009 - 19:01.