Epilepsy Consortium Scotland

Epilepsy charities call for more choice on care

Today, 12 September, an association of organisations representing the epilepsy community in Scotland published a new report which calls on the need for people with epilepsy to be given the choice about their care.

In the report, titled Specialist Epilepsy Appointments, Epilepsy Consortium Scotland notes that in the wake of the COVID-19 pandemic the format of appointments for epilepsy has shifted with the growing use of remote appointments replacing in-person care.

In many cases, telephone and video appointments are now being used as default.

A survey, conducted as part of this report, found that 62% of patients would prefer to attend their appointments in person, while a further 24% would like a mix of in-person and remote.

However, since the pandemic, only 16% of respondents to the survey have been allowed the opportunity to choose the format of their recent epilepsy appointments.

The report concludes firstly that people with epilepsy, where possible, must be allowed the opportunity to make informed decisions about their care.

Secondly, remote consultations must not become the default format of epilepsy management. And finally, it highlights that face-to-face care is critical in providing holistic epilepsy support.

The consortium is putting a spotlight on this issue via the My Epilepsy, My Choice campaign.

Lesslie Young, CEO of Epilepsy Scotland noted,

“This report makes clear the need for patient choice. While the report does not seek to diminish the benefits of remote consultations it emphasises the significance of face-to-face care.

The impact of epilepsy is unique to each individual, so the care patients receive must be designed to meet their needs.

If care is to be truly person centred, the decision between in person and remote appointments must be the patient’s to make.

Additionally, giving patients that choice would also support Commitment 1 of the Scottish Government’s own Neurological Care and Support: Framework for Action 2020-25.”

Shirley Maxwell, Executive Director of Epilepsy Connections said:

“We know that remote appointments work well for many people with epilepsy much of the time, but our team note that in some areas these have become the only option offered.

Patients have told us that they don’t feel they can ask to see their consultant or Epilepsy Specialist Nurse in person.

Effective management of epilepsy, which can be a complex, lifelong condition, relies on good relationships between epilepsy specialists and patients. If patients believe that relationship benefits from seeing their specialist face-to-face then that option must be made available.”

You can read the full report by clicking here.