5 September 2016

For immediate release

Improving the care of epilepsy patients

People diagnosed with epilepsy 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.

This will allow them to decide whether or not the patient needs to go to an accident and emergency department or whether the patient can safely recover at their home. This could not only avoid an unnecessary admission, but also potentially free up hospital beds.

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.

After chatting through her idea with neurology colleagues she approached Epilepsy Action who teamed up with health business Simplyhealth to fund 100 pilot packs starting off with a small pilot study.

Among those who would find the packs useful is Jenny Franchi, 47, from Stoke Hammond, who was diagnosed when she was 40.

She has experienced "three to Four" unnecessary admissions since then because her then neighbours nor the ambulance crew were aware that a seizure had happened.

On being admitted there is a follow up of routine checks.

She said: "It's really frustrating because time could be so much better used. This sort of thing would have been really useful."

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

Alison and her colleagues have about 700 patients known to their services, though not all of these require active support and involvement.

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 (in some but not all cases). General information personalised for the patient would also be included. It also contains an emergency contact number for ambulance crew to ring to gain further help for the patient - often a family member or friend to stay with them until they have recovered safely. This frees up the crews to leave.

Patients will be encouraged to keep all their epilepsy information together so if hospitalised they can give accurate and up to date information about their condition, which will empower them to be a part of any decision making process.

The information should also help other medical professionals in making decisions or providing advice.

Alison said: "I am not aware this has ever been done before for patients with epilepsy so it's a truly innovative idea.

"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."

The team is linking up with the Lions Message in a Bottle scheme. This is a simple, but effective, way to keep essential personal and medical details where they can be found in an emergency - the fridge.

Paramedics, police, fire-fighters and social services know to look in the fridge when they see the Lions Message in a Bottle stickers.

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."

Mark Begley, Area Manager for the Ambulance Service said: "SCAS is pleased to be part of this project which will assist our clinical staff in supporting their patients with epilepsy within the Milton Keynes area."

Editors' notes

Please contact Jeremy Dunning from CNWL on 02032145756 if you want to interview anyone mentioned in this release.

Pictures show Alison (left) and Jenny.

Central and North West London NHS Foundation Trust
Stephenson House, 75 Hampstead Road, London NW1 2PL
Tel: 020 3214 5756 e-mail:communications.cnwl@nhs.net