the history of epilepsy society
The National Society for the Employment of Epileptics (NSEE) was launched in 1892 by a group of London philanthropists and medical men. The aim of the Society was to establish a 'colony' for people with epilepsy who were capable of work but couldn't find employment due to their condition and the prevailing social attitudes of the time. At that time, many people with epilepsy were confined to workhouses or asylums due to difficulties in finding work and lodgings.
Once sufficient money had been raised, the Society bought Skippings Farm near Chalfont St Peter. The first home was a temporary iron building and water was supplied through a horse driven pump. In 1894 the first patients (or colonists, as they were called) were admitted; they were all men and were charged 10 shillings a week, although financial help was provided from an annuity fund for those who couldn't afford the full amount. The original staff consisted of a lady superintendent, a bailiff, a male attendant, a nurse and a female servant.
Only people considered to be of 'reasonable behaviour and mental ability' were admitted to the colony. They worked six days a week on the land or did domestic work in the home. Later on the men undertook other work such as carpentry, plumbing, painting and bricklaying. It was believed that the fresh air and hard work was beneficial to the patients' health and well-being - perhaps more so than drugs and doctors. However the men were visited regularly by medical staff from the National Hospital for the Paralysed and Epileptic in London, some of whom had been responsible for the founding of the NSEE. At this time, the headquarters of the Society were in London and the colony was planned and run from there.
Chalfont Colony - The women's side
A home for women was set up some years later. These women spent the first part of each week washing hundreds of items; then from Wednesday to Saturday they did the ironing. In later years they would also help with fruit picking and haymaking in the summer.
The centre expands
By 1900 there were seven permanent homes accommodating 90 men and over 40 women. Men and women were strictly segregated, with a 'neutral zone' between their respective quarters. Colony residents were not allowed to marry.
From 1909, children were admitted to the colony, after two homes and a school had been built, funded by the local school authority. In addition to their school lessons, they also did manual work for 12 hours a week. Scouts and guides were set up, and the children had many treats and outings. In the 40s, a dozen or so blind children with epilepsy were also admitted, an initiative negotiated with the National Institute for the Blind. However, this only lasted a few years.
Over the years, the numbers of residents rose, reaching a peak of 575 in 1942 - this included around 100 children. Due to falling numbers, the school was closed in 1957 and the remaining children were transferred to Lingfield, to what is now Young Epilepsy (formerly the National Centre for Young People with Epilepsy).
Resident doctors appointed
There had long been a debate over whether to appoint resident physicians, but agreement had not previously been reached. However, in 1965, due to the high demand on the visiting doctors and the matron, the first resident doctors were appointed, with responsibility for assessment, treatment and rehabilitation. This was also a time of great advances in the treatment of epilepsy, and at the colony medical care of the residents improved.
From the late 60s, patients began to be admitted to Chalfont for short-term care. A therapeutic work centre for residents was set up and the homes were modernised. In addition, as part of the rehabilitation programme, a warden-supervised hostel with bedsits was opened in Lakeman House.
One of the most significant developments of the time was the setting up of the National Hospital - Chalfont Special Centre in 1972, in the wake of the Reid report into people with epilepsy. This provided a hospital and residential component to give social and medical assessment and rehabilitation. Most Special Centre patients stayed 3-6 months, but if they needed longer, they were admitted to residential care in the main centre.
A new name – The National Society for Epilepsy (NSE)
Around this time, the Society acquired a new name. At the beginning of the century the name had already been changed to The National Society for Epileptics, and now it was changed again, this time to The National Society for Epilepsy, as it was felt that use of the word 'epileptic' perpetuated stigma against people with epilepsy.
Advances in epilepsy research
In the 70s, there was a significant increase in the amount of epilepsy research being carried out at NSE by the resident physicians, particularly research into anti-epileptic drugs. This was seen as appropriate given NSE's first hand experience of epilepsy management.
By the 80s, the Society's medical and scientific staff had gained an international reputation in the field of epilepsy, and a further development was the establishment of outpatient clinics. The Society had always aimed to promote the welfare of people with epilepsy generally, and this now became part of NSE’s work. A health education and information service was set up, providing literature and videos, including information packages for professional groups.
The new millenium
The noughties saw many changes. NSE’s world leading research and medical services went from strength to strength. Our residential care focused on those with severe epilepsy and associated learning or physical disabilities. And our range of expert support services empowered more and more people to live independently. Epilepsy information services grew, including a country-wide support and information service in NHS hospital clinics. The epilepsy helpline developed, and information and support became available in a number of different languages. NSE’s range of information resources grew, embracing opportunities offered by new media.
2011 - Epilepsy Society
On 1 January 2011, we took on our new working name, Epilepsy Society. By shortening and simplifying our name, we hope to reach out to more people affected by epilepsy and, together, help fulfil our vision of ‘a full life for everyone affected by epilepsy’. We changed the way we look from NSE orange to Epilepsy Society purple – chosen, of course, because purple is the international colour for epilepsy. We remain the only UK epilepsy charity to deliver a full programme of medical research in epilepsy. And we continue to provide expert medical care, residential care and information services including our leaflets and videos, helpline and information clinics in NHS hospitals.
Now we want to work together with people affected by epilepsy on campaigns and awareness raising to influence society, government and the media. People affected by epilepsy still face too many challenges to living a full life, and we want to work with you to make that difference.
Will you make the connection to Epilepsy Society?