New ‘innovative information packs’ rolled out for people diagnosed with epilepsy in Milton Keynes

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People diagnosed with epilepsy in the Milton Keynes area are to test the usefulness of innovative information packs that could ensure they avoid an unnecessary visit to an A&E department when experiencing an epileptic seizure.

The pack contains details of their medical history and will be held by the patient or their carer so that ambulance crews from South Central Ambulance Service will have a better understanding of the patient when they are called to their home in the event of them suffering from a seizure.

The idea came from Milton Keynes-based CNWL specialist epilepsy nurse, Alison Taylor, otherwise known as a Sapphire Nurse.

Alison realised there was a gap in the treatment of patients with epilepsy as currently ambulance crews have a difficult choice to make when they are confronted with a patient experiencing an epileptic seizure. They can either leave them at home once they have fully recovered or take them to hospital when there may be no medical need.

She approached Epilepsy Action who teamed up with health business Simplyhealth to fund 100 pilot packs starting off with a small pilot study.

Based on feedback from patients, carers, ambulance crews and clinicians, the aim is to roll out the packs next year.

The pack contains up-to-date care plans, the last epilepsy clinic letter, any medication changes or plans for medication changes as well as a protocol detailing with medications to use an emergency situation

“I am not aware this has ever been done before for patients with epilepsy so it’s a truly innovative idea,” said Alison.

“Obviously an ambulance crew member will need to stay with them during an episode but often there is no clinical need for hospital attendance following an epileptic seizure. Nor does the patient particularly want to be in the hospital environment if it can be avoided so this is better for patient outcomes.

“We hope that through these packs we will be able to avoid admissions and help patients to better manage their condition.”

Peri O’Connor, healthcare projects co-ordinator at Epilepsy Action, said: “Many people with epilepsy face significant difficulties when having a seizure and being admitted to hospital unnecessarily can create further challenges. This pilot scheme could make a real difference to their lives and help health professionals to deliver the best epilepsy care.

“We hope that the epilepsy packs will have a positive impact on patients’ experience and that the scheme can be rolled out to other parts of the UK as a beacon of best practice to deliver a better and more efficient service for people with epilepsy.”