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'We heard some heartbreaking stories and realised the service was not good enough'

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Two specialist epilepsy nurses turned their service round to ensure it centred on patients’ needs

Vicki Myson and Malisa Pierri are living proof that the NHS is designed around patients. The duo, who are epilepsy specialist nurses at Cardiff and Vale University Health Board, are continually extending their role to meet the needs of patients, such as running specialist clinics and advising community teams on epilepsy issues.

Most recently, they started carrying bleeps so they are on call for suspected first seizures and epilepsy admissions that come in through the emergency unit.
The goal is to provide patients with access to specialist care in the emergency unit, prevent unnecessary admissions and maximise access to treatment.
As well as ensuring that people with suspected epilepsy are fast-tracked to appropriate care, this has reduced the average length of stay, releasing about 30 bed days a month and saving the health board £48,000 a year.

It was a desire to educate hospital staff about epilepsy and to improve care and begin it earlier that inspired them to start this service.
“We audited our practice, collected patient stories and maps and realised the service was not good enough,” says Ms Myson.
“We heard some heartbreaking stories, such as patients waiting 200 days to be seen by a specialist practitioner. We thought we needed to look at what we were doing and how could it be changed with the realistic expectation that we would have no extra resources to do it.”

Adaptability in providing care has always been a part of their portfolio since Ms Myson joined 18 years ago, and Ms Pierri eight years ago.
The Welsh Epilepsy Centre, which has around 13,000 adult patients, has two neurologists, one neuropsychiatrist and just two specialist nurses. With limited resources, they have had to think innovatively.

As well as a telephone advice line, they run an email advice service that patients, practice nurses and GPs can use to ask about anything from driving regulations for patients with epilepsy to how the contraceptive pill affects medication.

“People like using email as an easy, quick way of asking clinical questions. Patients can take time to articulate their questions and then have a written record of the information that has been provided,” says Ms Pierri.

“With clinicians working in different areas, discussing patients in person or over the telephone can be difficult. With email, we can receive and respond at times that suit.”

The duo also run four clinics each a week. Clinics range from general new cases and follow-up to specialist services such as pre-conceptual counselling, antenatal outreach.

Clinic consultations are undertaken in person and by phone, because patients are from a wide area and because not all of them can drive.
“At times, telephone consultations are easier for the patient - they can have the consultation in the comfort of their own home without the stress of travelling to the hospital,” says Ms Myson.

Clinics are tailored to patients’ needs. For example, families attending the epilepsy antenatal outreach clinic are seen as part of their normal antenatal visits.
“We can offer a uniquely nursing perspective in this environment,” says Ms Pierri. “Concentrating on issues such as how to care for a baby when seizures occur without warning or when bathing babies, or if a seizure occurs when a parent is on their own and can’t get to a crying baby. Mostly, it’s about reassuring families, alleviating concerns and ensuring that they have the same opportunities as any other new parent.”

The pair see demystifying epilepsy to clinicians, patients and the wider public as a large part of their role. There are 450,000 people with epilepsy in the UK and up to 70-80% of those newly diagnosed could be seizure free if the medication is right and they are treated at the right time.

Ms Pierri explains: “Evaluating the condition rests on talking to patients and their families; we have no investigations that can tell us how a patient is responding to treatment - this makes for interesting careers.”

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