‘Huge and unjust disparities’ across NHS neurology services

Published: February 12 2024
Last updated: March 26 2024

Grace Wood | There is one neurologist to every 755 people with epilepsy in the North East, but one to every 191 in London

These figures come from an Epilepsy Action report into NHS workforce data across EnglandLondon has almost four times more neurologists per person with epilepsy than the north east of England, according to new research from Epilepsy Action.

Rhys Thomas, consultant neurologist at Newcastle Hospitals NHS Foundation Trust, said patients in England face “huge and unjust disparities”.

There is just one neurologist to every 755 people with epilepsy in the north east of England (39 in total), but one to every 191 in London (326 in total).

The north east of England has the highest epilepsy prevalence rate of any area at 1.1%. In this region, 42 people out of 100,000 will be diagnosed with epilepsy every year.

Thomas added: “It doesn’t have to be like this. Good epilepsy care is dependent on helping patients access flexible and responsive service, as well as training and retaining excellent clinical staff.”

These figures come from an Epilepsy Action report into NHS workforce data across England. The charity sent Freedom of Information requests to 193 trusts across England (of which 174 responded) and then compiled the data.

The report (published in Epilepsy Professional) shows that where a patient lives impacts their access to neurology services, and even the better-served areas of England are significantly more understaffed than other countries in Europe.

The research also looked into the numbers of epilepsy specialist nurses. It found there are just two epilepsy specialist nurses per 500,000 people, which is 78% lower than the NICE-recommended rate of nine per 500,000 people.

The investigation also considered England’s neurologist workforce compared to the rest of Europe. England has one neurologist per 50,000 people. In France and Germany there is one neurologist for every 25,000 people.

Thomas added: “Neurology care across the country has not been designed, but has evolved based on geography and history and certainly not patient need. This imbalance affects some areas more than others. Smaller teams are more vulnerable to change, whether this is retirement, ill-health or maternity leave.

“There is no minimum standard for an epilepsy service. NICE guidance is helpful, but there are no penalties for failing to follow them, so we lack the ‘key performance indicators’ for secondary care, that could be used to improve equity and access.

“And we know there are huge and unjust disparities. Some patients don’t even have access to first seizure service, which is where people who are suspected of having a seizure are seen rapidly, ideally within two weeks.

“What’s needed is a strategic drive towards addressing health inequalities, by committing to provide significant additional financial support to allow trusts to employ sufficient neurologists.”

While the data only includes figures for England, available research shows in Northern Ireland there are five epilepsy specialist neurologists and 14 epilepsy specialist nurses, a ratio of one ESN to every 1,947 people with epilepsy. In Wales there are approximately 32,000 people with epilepsy, with 22.5 epilepsy nurses and 12 epilepsy specialist neurologists. That’s one epilepsy specialist neurologist to every 2,996 people with epilepsy and one nurse to every 1,598 people with epilepsy.

Epilepsy Action director of health improvement and influencing Alison Fuller said: “There’s no doubt neurology services have historically been underfunded and overlooked, but our new analysis shows that staffing levels are even more inconsistent than we thought.

“This means patients don’t have access to the same levels of care, facing extremely lengthy waiting times and ultimately risking their quality of life deteriorating. But this also has a huge impact on healthcare professionals, who are severely overstretched and juggling overwhelming caseloads.

“What’s more disappointing is that epilepsy has been left out of the government’s Major Conditions Strategy, and that there was no mention of measures to address shortages in the NHS Long Term Workforce plan against condition specific workforce.

“Our calls to include neurology, and epilepsy especially, as a priority, given the unique challenges both staff and patients face, have not yet been listened to by policymakers. But we will continue to shine a light on the impact these shortages are having on both people with epilepsy and healthcare professionals until they are.”