Beginnings
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.
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The
'colonists'
Initially, only people
of 'reasonable behaviour and mental ability' were admitted to the colony.
They worked 6 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.
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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.
Chalfont Colony - The Women's Side
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The centre expands
By 1900 there were
7 permanent homes accommodating 90 men and over 40 women. Men and women
were strictly segregated, with a 'neutral zone' between their respective
quarters; colony patients 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 the National Centre for Young People with Epilepsy.
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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.
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A new name
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 the NSE by the resident physicians, particularly research into
anti-epileptic drugs. This was seen as appropriate given the 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 policy
when a health education and information service was set up, providing
literature and videos, including information packages for professional
groups.
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The last decade
The last decade has
again seen many changes. Today the residents include many more people
with learning difficulties and other disabilities. Medical services and
research have gone from strength to strength, the most significant developments
being the purchase of a MRI scanner devoted exclusively to epilepsy. Information
and Education services have expanded, and now include an epilepsy helpline,
an epilepsy awareness training service and a network of epilepsy information
services - and, of course, this website.
At the beginning of
2002, a new purpose-built assessment centre was opened to replace the
outdated unit which had been used until then. The new centre has state-of-the-art
facilities, including 26 beds, five consulting rooms and four rooms wired
for EEG-video telemetry. We continue to pursue our aim of improving the
health and well-being of people with epilepsy.
The NSE’s
ambitious programme of fundraising seeks to raise awareness and understanding
of epilepsy while securing vital funds to underpin all aspects of our
work. You can help us continue this work by making an online
donation.
January
2003
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