Chalfont St Peter charity celebrating its 125th anniversary
PUBLISHED: 09:32 03 October 2017 | UPDATED: 09:32 03 October 2017
As a national charity based in Bucks celebrates its 125th anniversary, Nicola Swanborough explains how it has become an integral part of Chalfont St Peter
Towards the end of the 19th century, in a small Buckinghamshire village, a quiet revolution took place that was to change forever the treatment of people with a largely stigmatised and misunderstood health condition.
In Victorian England, epilepsy was a word that was much feared. People who fell to the floor with convulsive seizures were thought to be both contagious and demonised. At best they were hidden away from society. At worst they ended up in institutions for the incurably sick, gaols or the workhouse. But this was also an age of brave new ideas, pioneering expeditions and scientific exploration. People were taking risks with a can-do attitude that was to shape the fast approaching 20th century.
And among those pioneers was a group of neurologists who were determined to turn the tide of medicine and society in a way that would give hope and a future to people with epilepsy. The specialists were based in London in what is now known as the National Hospital for Neurology and Neurosurgery, but they were looking for green fields, fresh air, good nutrition and employment prospects for their patients.
So they chose the little village of Chalfont St Peter in the Chiltern Hills. It was far enough from London to escape the smog and destitution of overcrowded living, but close enough to be in striking distance of the capital by private carriage or train and trap. And there was farmland aplenty to develop employment opportunities such as agriculture, dairy farming and fruit picking.
The neurologists felt that Chalfont St Peter could offer people with seizures a quality of life that society in general would not allow them. With the financial support and dedication of philanthropists and friends, the National Society for the Employment of Epileptics was formed and a ‘colony’ was established at Skippings Farm.
An initial £4,000 from the Society’s greatest benefactor, Passmore Edwards, funded the purchase of the farm, but other generous donors included more familiar names: John Lewis Roget, son of the compiler of the famous Roget’s Thesaurus, and Caleb Ashworth Tate, of the Tate Lyle sugar family and son of Sir Henry Tate, founder of the Tate gallery.
That was in 1892, and though times have changed the work of those founding fathers still continues in the leafy village of Chalfont St Peter. The charity, tucked away at the top of the valley, is now known as the Epilepsy Society and the term ‘colony’ has long been confined to the history books.
The landscape of epilepsy has changed completely. People with the condition no longer live in retreats but lead ordinary fulfilling lives out in the community – like everyone else. In the 21st century people with epilepsy are world record holders in the field of sports, game changers on the political platform, teachers, neurologists, artists, musicians and lawyers. But many with uncontrolled seizures still struggle, and the work of Epilepsy Society remains as relevant as in Victorian times.
Although at one time the charity was home to 400 ‘colonists’, today it has just 100 residents with the most complex epilepsy and learning difficulties. And the remit of Epilepsy Society has expanded significantly to support more than half a million people living in the UK with epilepsy through information and emotional support.
Over the course of a history that spans three centuries, the DNA of both the charity and the village have become intrinsically intertwined. The village is very much a part of the life blood of the charity.
The local community provides friendship and company for those living at Epilepsy Society. School children visit to bring presents and sing carols at Christmas. Volunteers from the village and neighbouring areas befriend residents and support them in activities, trips, sport and visits to the on-site coffee shop. Many local businesses make the charity a priority when fundraising. And Epilepsy Society is renowned dog walking territory.
But alongside residential care, Epilepsy Society has flourished into a world centre of excellence for the diagnosis and treatment of epilepsy, and for groundbreaking research into the condition. Behind a leafy facade of beech and laurel, hawthorn and hazel, a team of epilepsy experts not only provide specialised care for patients with uncontrolled seizures, often assessing them for brain surgery, but they are leading the world in exciting new research into the genetic causes of epilepsy.
In the early days of the ‘colony’, when Dr Aldren Turner cycled from London to Chalfont St Peter to see patients and carry out the first clinical research at the centre, the word ‘gene’ had not even been coined. But today scientists at Epilepsy Society are making life-changing discoveries by sequencing the DNA or genome of people with epilepsy.
By looking at the three billion letters of each person’s DNA, they are trying to understand why seizures happen and which medications will best bring them under control. They are working closely with Genomics England as part of the 100,000 Genomes Project.
At the same time scientists are using the most sophisticated MRI scanning techniques to painstakingly map the brain, investigating both its structures and the critical pathways that allow different areas to function and communicate. They hope that information and knowledge gained from a combination of both genetics and brain imaging will help them finally crack a condition that was first recorded by Hippocrates as long ago as 400BC.
Professor Ley Sander is medical director at Epilepsy Society and describes himself as ‘a frustrated historian’. He came to the Society as a research fellow from Brazil in 1985 and has dedicated his life to understanding more about epilepsy and alleviating the impact of living with uncontrolled seizures.
“Epilepsy Society has a very long and rich history in Chalfont St Peter,” he says. “I feel very proud that we are able to continue the innovative and groundbreaking work of our founding fathers on the very soil that they secured for people with epilepsy. We are fortunate to have the space to care for residents with very complex epilepsy, provide specialised medical care for people whose epilepsy doesn’t respond to medication, and carry out cutting edge research which offers the best hope of beating epilepsy.
“We always feel that we are standing on the shoulders of giants and are part of a very important journey that began here in Chalfont St Peter 125 years ago. Epilepsy Society has become part of the landscape in the Chiltern Hills. You only have to look at the age of our lime trees and horse chestnuts to see how long we have been here.
“But the story isn’t finished yet. With genomics we feel that we are entering one of the most exciting chapters in the history of epilepsy. And all from the village of Chalfont St Peter.”
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