Covid-19: People with Neurological Conditions

Lord Vaizey of Didcot Excerpts

Thursday 27th May 2021 Grand Committee

[Lord Vaizey of Didcot (Con)]

My Lords, this debate is a salutary reminder of the range of neurological conditions that have been affected by the pandemic. I speak in my capacity as the president of SUDEP Action, a local charity in my former constituency of Wantage. SUDEP stands for “sudden death in epilepsy”; it is perhaps astonishing to learn that 21 people a week die suddenly of epilepsy, often in the prime of their life, and that 50% of those deaths could be avoided with proper treatment. In fact, epilepsy is the second most frequently reported potentially treatable cause of death. The number of women who are pregnant and dying of epilepsy has also doubled in the last few years.

SUDEP Action has led international research on the pandemic’s impact on epilepsy and bereaved communities throughout 2021, along with the University of Oxford and Newcastle University. These statistics will echo some that have already been cited for other conditions: 40% of people with epilepsy had worsening health during the first wave of the pandemic; almost all epilepsy sufferers have reported increasing mental strain; a third have experienced issues with accessing care; a quarter have trouble getting their medication; and one in five have not seen a health professional in a year.

Two decades ago, the Government had a national audit of epilepsy death, which brought these deaths out of the shadows, but only recently have steps been taken to implement some of its recommendations. Of course, as has been echoed in other speeches, the opportunity to implement those changes has been severely put back by the impact of the pandemic. SUDEP Action has put in place a number of protocols to help people suffering with epilepsy. It works with 1,200 health professionals to ensure that those suffering from epilepsy can use a checklist to check their health, and works with an app that allows it to monitor the condition of 4,000 patients. This wonderful charity that I work with would clearly like to see—like many other charities, I suspect—that, when the eventual inquiry into the Covid-19 pandemic takes place, we look not just at Covid deaths but at the deaths of people who suffered from other conditions and whose healthcare has been impacted.

More long term, we need to level up epilepsy services and care provision, providing access in the community to a named co-ordinator of care for each individual with epilepsy. A vital levelling up of tailored communications of the risk of epilepsy is also needed nationally, just as we broadcast the risks of asthma or diabetes. These resources already exist but they require national rollout and implementation, and support from government.