Passmore Edwards - revolutionising the treatment of epilepsy
On 24 March 1823, in a quiet village in Cornwall, a baby boy was born who would go on to help revolutionise the way that people with epilepsy were treated.
John Passmore Edwards is hardly a household name, yet on 22 April – coincidentally the anniversary of his death – people travelled from across the UK to mark the bicentenary of a man who was arguably one of our greatest Victorian philanthropists, albeit a largely unsung hero.
In spite of humble beginnings and one-time bankruptcy, Passmore Edwards, as he came to be known, funded the foundation of 70 buildings in England for the benefit of working class people, including libraries, schools, hospitals, convalescence homes and galleries.
Significantly, he funded the purchase of farmland in Chalfont St Peter, Buckinghamshire, which enabled doctors to found the National Society for the Employment of Epileptics – now the Epilepsy Society. It heralded a whole new era for the way people with epilepsy were treated.
Epilepsy in Victorian England
Victorian England was a hostile environment for those with the condition. Epilepsy was poorly understood. It was widely believed that the condition was both contagious and caused by demons. People with the epilepsy were hidden away, unable to work and often ended up in the workhouse, asylums or gaols.
But a group of pioneering London doctors recognised that, in between seizures, people with epilepsy could lead very normal lives and were as capable as the next person of employment. Many of the doctors – among them Sir William Gowers, Thomas Buzzard, David Ferrier, Henry Tooth, Victor Horsley – would fear discharging their patients with epilepsy from hospital, knowing that they were likely to end up destitute and incarcerated.
Their dream was to set up an alternative way of life for their patients, away from the city smoke and prejudices of London life. They wanted to provide people with epilepsy with fresh air, good nutrition, peer support and, above all, employment. The only thing that stood in their way, was finance. Step forward Passmore Edwards.
The Cornishman had already established a quiet reputation for philanthropy, believing that if he provided a ladder, the poor would climb up it. In spite of a period of bankruptcy in 1853, as a journalist and newspaper proprieter he had turned around his fortunes and was only too willing to share his own good luck with those he saw struggling. Health and education were the ladders that he saw as routes out of poverty.
When Edwards was approached in 1892 by Rosa Pearman, the wife of one of the lay founders of the Society and chairman of the Ladies’ Samaritan Society, to help fund a new life for people with epilepsy, he didn’t hesitate. He provided £4,000 for the initial purchase of Skippings Farm in Chalfont St Peter, and took on a large part of the financial burden of the new venture as the ‘colony’ found its feet.
Edwards became vice-president of the Society with the first home for women with epilepsy being named after his wife, Eleanor, and another being named after his much-loved mother, Susan. The administrative building for the Society – still is use today – is called Passmore Edwards House.
It is never known for sure whether Edwards had a personal connection with epilepsy, though it is likely that his term in debtors’ prison for bankruptcy may have given him an insight into the plight of inmates whose only crime was epilepsy.
Regardless, his financial commitment enabled the London doctors to realise their vision of a new life for their patients with epilepsy. Not a convalescence home but a community where they could work and lead fulfilling lives. And it worked.
People with epilepsy farmed the land, growing fruit and vegetables, worked on the dairy farm and learned skills as farriers, carpenters, builders, bookbinders. Many of the women worked in the laundry, kitchen or as seamstresses. Children were provided with a full education.
In the early days of the Society, just the change of environment, positive approach, good nutrition and peer support, saw an improvement in the frequency and severity of many people’s seizures. For most of the ‘colonists’ as they were known, it was the first time they had met others with epilepsy. It was the first time they felt understood and supported.
When the Society was established, the only treatment for seizures was bromide salts. However, in time, new drugs were developed, many of which were trialed at the Society.
Edwards died in 1911 and in the decades that followed, the Society acquired more land and houses, with around 500 adults and children living, working and studying on site. But in time the approach to the care and treatment of people with epilepsy changed again.
The campus lifestyle of a community dedicated to epilepsy was seen as outdated. Society attitudes to epilepsy had changed and with better medications resulting in better seizure control for some, those who were able to, returned to living in the community.
Passmore Edwards' legacy
Today, only those with the most complex epilepsy and associated disabilities live at the Society where the emphasis is on people-centred care with everyone supported to lead as full a life as possible.
The legacy of Passmore Edwards lives on through the world-leading epilepsy research centre now established at the site he purchased 131 years ago, in a pure leap of faith. Where Edwards invested in land for growing vegetables, the Society now invests in researchers from around the world and groundbreaking research that will continue to transform the lives of people with epilepsy in the same way that our founding fathers did.
We are at the forefront of genomics research into epilepsy. We have the only MRI scanner in Europe dedicated to epilepsy and our neuroimaging enables people with epilepsy to be assessed for brain surgery – the closest to a cure that there is for epilepsy.
The Society is a voice for the 600,000 people with epilepsy across the UK. We have campaigned for a new law – Zach’s Law – to be introduced to protect people from online trolling, a concept that could not have been imagined in Passmore Edwards’ time. This is the first time a law has ever been introduced specifically to protect people with epilepsy.
And the work of the charity is largely funded by our supporters. Every year, thousands of people bake cakes, shave their heads, jump out of planes, walk miles to raise money for us. On Sunday 23 April, the day after Edwards’ bicentenary celebration, 66 people ran in the London Marathon for us, raising over £125,000.
The ladder which Passmore Edwards provided in Victorian times has long over-reached its target. His personal philanthropy has enabled people and communities to become philanthropists themselves, with every penny raised deepening our understanding of the cause of epilepsy and improving the diagnosis and treatment of the condition.
Passmore Edwards’ grave lies in Kensal Green Cemetery in North London. He lies alongside Dukes and Duchesses, tightrope walkers, philanthropists and those whose stories can only be imagined.
It is an apt resting place for a man who helped revolutionise epilepsy, a condition which can affect anyone of any age, gender, ethnicity or faith.
Passmore Edwards 24 March 1823 – 22 April 1911