Epilepsy services need to resume as quickly and safely as possible, say leading epilepsy charities and health professionals. In a statement released last week, they have urged decision makers and clinicians to prioritise neurology, including epilepsy, as lockdown eases and services resume.
The coalition of organisations and neurologists includes the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and the Epilepsy Nurses Association (ESNA). Epilepsy Action, SUDEP Action, Epilepsy Research UK, Epilepsy Scotland and Young Epilepsy are also among the organisations involved, alongside a number of specialists, including consultant neurologist Dr Rhys Thomas and professor of neurology Prof Tony Marson.
The coalition say that health leaders need to act quickly to minimise additional risks for people with epilepsy, reverse reported falls in hospital attendance and prevent premature epilepsy-related deaths. They say at a minimum, people with suspected first seizures must have access to a consultation with an epilepsy expert. People should also be able to contact neurology services and receive a meaningful response.
Epilepsy Action chief executive Philip Lee said epilepsy services had understandably taken a back seat to maintain critical NHS capacity during the pandemic outbreak. However, he warned that current service provision could not be the ‘new normal’ for people with epilepsy.
Mr Lee said: “Health services were rightly reorganised at pace to maintain critical NHS capacity during the COVID-19 pandemic. The same pace and leadership initially shown, and subsequently demonstrated in restarting cancer and fertility services, must now be applied to restarting neurology services.
“We need to act quickly to minimise additional risks people with epilepsy continue to face. These include reduced access to services, telephone-only support, cancelled appointments and diagnosis delays.”
The NHS response to the pandemic has had a negative impact on diagnosis in neurology services, the coalition warns. People with possible seizures have not been assessed with speed or had access to all the usual tests. There is a risk if people remain untreated. Every week, 21 epilepsy-related deaths are recorded in the UK, nearly half of which are thought to be avoidable.
Telephone consultations have replaced face-to-face appointments in many cases, but Mr Lee stresses that assessing the effects of a neurological condition can be very challenging over the phone. “It is not appropriate for this to be adopted as the ‘norm’ in the longer term unless there is solid medical evidence to support this and no likelihood of worsening health inequalities.”
Epilepsy Action, Dr Thomas and Prof Marson have developed the statement with the support of the other members of the coalition. The document sets out expected service provision during the COVID-19 pandemic and it is hoped it will encourage clinicians and NHS decision makers to prioritise epilepsy services.
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Epilepsy Action regularly reviews and updates its coronavirus information. Our latest update talks about whether facemasks are safe for people with epilepsy.