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History of the Thalidomide Society
Early days
On Sunday, the 12th August, 1962, the parents of four thalidomide-disabled children met together in the Dolphin Hotel, Southampton. Their aim was to form a national society with the hope that by a united effort all thalidomide-impaired children might achieve a happy and satisfying adult life.
As a result of excellent press publicity, contact was soon made
with many other families and in October 1962 the inaugural meeting
of the Thalidomide Society was held in London. Following considerable
discussion on the future medical, social and educational needs of
the children, the parents resolved that an appeal should be made
for public support.
The work of Lady Hoare
Lady Hoare, then Lady Mayoress of London independently launched her own national thalidomide appeal early in August 1962 and founded her own Trust for physically disabled children in that year. Shortly after the inaugural meeting of the Society, Lady Hoare was invited to become President of the Society, a post which she retained until her death in 1973 when the special relationship between the Society and the Lady Hoare Trust ended.
Lady Hoare visited many hospitals and centres, both abroad and in
the UK, to examine training and treatment facilities for the children.
As a result of her visit to Heidelberg University, Germany, in 1962,
some of the children were fitted with the 'Heidelberg Arm'.
Two years later, following a visit by the Lady Hoare Trust to Russia,
an electronic forearm and hand weighing little more than a kilogram,
and driven by miniscule electric impulses from the wearer's
nerves, was introduced to the UK.
The Lady Hoare Trust also made grants to develop the facilities at the Oxford Centre and Chailey Heritage Craft School and Hospital, where a considerable amount of work had previously been carried out into the care and training of disabled children. A unit to accommodate mothers and children was provided at the Princess Margaret Rose Hospital, Edinburgh.
Structure and communication
Because of the wide geographical spread of the families, branches were set up throughout the country, enabling parents to meet each other frequently, with the Society co-ordinating activities. This included extending contact to other organisations that might offer support or help for the children.
Information was disseminated using a quarterly newsletter and the Society worked with other charitable organisations in gathering information.
By the late 1970s the initial need for the existence of the branches had been met and in 1978/79 the branches ceased to function.
In the early 1980s the Society undertook a survey into the problems experienced by artificial limb users. This research culminated in a conference on artificial limbs with people concerned with the researching, production and fitting of artificial limbs.
Education
The Society felt that the children should have access to the very best facilities in education, and that they would usually benefit from attending mainstream schools ñ and about three quarters of them did.
However, children with hand or arm impairment were experiencing difficulties with writing at speed once they reached secondary school. The Lady Hoare Trust provided two schools with Possum equipment, which enabled thalidomide-impaired children to keep pace with their able-bodied peers.
Regular contact was maintained by the Society with government ministers, particularly in the field of education and health, in order to enlist their support in overcoming any problems as they arose.
Welfare
The basic aim of the Thalidomide Society and the Lady Hoare Trust
was to enable thalidomide-impaired children to enjoy family life
in their own home and, as adults, to become full and active members
of the community. At that time, 90% of the children were living
at home.
Because of the practical problems faced by many of the children and their parents, the Lady Hoare Trust employed qualified welfare workers to visit families throughout the United Kingdom. The workers' brief was to ensure that any family that needed assistance or advice received it.
Growing up
As the children became teenagers, the focus of concern became employment, training and future prospects. The Society prepared a series of education handouts, including a guide to higher/further education and training. A number of other leaflets and papers were produced on subjects like money management, leisure, physical fitness, housing, and micro-technology.
Meetings were held with the Department of Employment and the then
DHSS, and the Society participated in a seminar on employment issues
for school leavers with 'limb deficiencies'. Approaches
were also made to examination boards to ensure that the needs of
thalidomide-disabled children during exams ñ particularly extra
time ñ would be met.
Present and future
Throughout its history, the work of the Society has been geared to meeting the needs of the children harmed by thalidomide as they have grown through infancy, childhood, and adolescence to adulthood.
Today, as they reach their forties, the majority of thalidomide-disabled people hold a driving licence, about half are in some form of employment, and many now have children of their own.
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