History of Epilepsy Action

The driving force for the creation of British Epilepsy Association (BEA) came from the work of Dame Evelyn Fox, who was General Secretary of the National Association for Mental Health (NAMH – now known as MIND) in the late 1940s, and Dr Tyler Fox (no relation) who was Medical Director of the Epilepsy Colony at Lingfield in Surrey. The third member of the group was Irene Gairdner, a social science graduate from the London School of Economics.

At this time the NAMH also covered epilepsy, although Dame Evelyn had always stressed that this was not appropriate because epilepsy is not a mental illness. In 1950 British Epilepsy Association was launched as an independent organisation at a Royal Society of Medicine meeting.

Since May 2002, BEA has worked under the name Epilepsy Action. However, its aims are still the same as those in 1950, namely to improve the quality of life for people with epilepsy. As well as campaigning to improve epilepsy services and raise awareness of the condition, Epilepsy Action offers assistance to people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences, an Epilepsy Helpline and website.

The following is a summary of some of the work that Epilepsy Action has been involved with over the years.

• 1950s
• 1960s
• 1970s
• 1980s
• 1990s
• 2000s

1950s

1950
British Epilepsy Association (BEA) formed 5 September

1953
BEA gave evidence for the Committee of Enquiry on the Rehabilitation of Disabled Persons (Piercy Committee)

1954
Scottish Epilepsy Association founded by BEA Glasgow and West of Scotland Branch. First BEA newsletter printed.

1955
Ministry of Health Cohen Committee set up to consider medical aspects of epilepsy.

1956
BEA lobbied Parliament on prescription charges, driving licences and the welfare of people with epilepsy in psychiatric hospitals. Cohen committee report published. Ten BEA social clubs set up.

1957
First BEA film launched - People Apart - shown on BBC Panorama programme. BEA ‘branch' formed in New Zealand. Similar organisations were set up in Australia, Canada, USA, France, Sweden, Peru and Switzerland.

1958
First National Epilepsy Week inspired and launched by BEA. People Apart shown at the House of Commons. BEA prepared evidence for the British Council for Rehabilitation's Working Party on the Handicapped School Leaver. Embarked on Employment Enquiry, a pilot scheme involving 700 people. Lobbied Ministry of Transport about driving regulations.

1959
HRH Princess Marina, Duchess of Kent became Patron of BEA. Number of BEA social clubs increased to 13.

1960s

1961
International Bureau for Epilepsy co-founded and established on BEA premises. BEA ‘branch' formed in Australia.

1962
BEA examined world-wide immigration regulations. Contributed to Child Health Research Joint Charities Committee examining research into disability.

1964
Lord Hastings became President of BEA. BEA incorporated as a charitable company limited by guarantee.

1965
Lord Hastings debated in House of Lords on ‘Medical Care of Epileptics'. Number of BEA social clubs increased to 30.

1967
BEA lobbied Ministry of Transport (MOT) on discrimination against people with epilepsy concerning driving licences. BEA successfully lobbied Ministry of Health (MOH) to set up sub-committee to advise on the welfare of, and social services for, people with epilepsy.

1968
After lobbying by BEA, MOT announced proposals to amend driving licence law. People free from awake seizures for more than three years would now qualify for driving licence. Prescription charges introduced. Mary Wilson, wife of the then Prime Minister Harold Wilson, launched British Epilepsy Research Fund appeal. MOH requested report from BEA on the welfare and social services for those with epilepsy. Joint Working Party developed plans for a hostel for people with epilepsy. BEA's Epilepsy Information Unit was set up.

1969 
HRH Katharine Worsley, Duchess of Kent became Patron in succession to the late Princess Marina.

1970s

1970
BEA launched a campaign to recruit volunteers. First residential training course held. This involved 23 courses and conferences organised for social workers, teachers, doctors and personnel officers.

1971
Study Epilepsy in Society published in conjunction with the Office of Health Economics. Department of Employment invited BEA to take part in training course for careers officers and disablement resettlement officers. New BEA film, Without Prejudice released.

1972
BEA co-hosted Fifth European Symposium with the International Bureau for Epilepsy and the International League Against Epilepsy. Organised national conference with the British Diabetic Association and the National Association for Mental Health. Investigated insurance cover for people with a history of epilepsy.

1973
Research Fund Appeal reached its target of £100,000. BEA addressed the Conservative Party's Committee on Social and Medical Services.

1974
BEA launched Parent Support Groups. Fifty Action Groups in operation.

1976
Eighty seven regional groups in action. BEA's Northern Ireland office established.

1977
Minister for the Disabled launched National Epilepsy Week.

1978
BEA moved HQ from London to Berkshire. Epilepsy - A Label for Life film launched. BEA involved with the government's Warnock Committee inquiry into Special Educational Needs. The Warnock Report, welcomed by BEA, recommended reforms for children in mainstream education and special schools. Sir Keith Joseph MP and TV and radio personality Terry Wogan launched National Epilepsy Week. BEA helped set up epilepsy self-help group in Canada. BEA presented paper at the 10th International Symposium on Epilepsy.

1979 
National Centre for Social Aspects of Epilepsy opened at HQ. Terry Wogan launched appeal for £50,000 for BEA's Children's Holiday Unit.

1980s

1980 
BEA launched personal accident insurance schemes for members. Ten thousand free school packs distributed.

1981
BEA contributed to consultation on epilepsy and employment to Manpower Services Commission. BEA reviewed driving regulations again with Department of Transport (DOT). Groups formed in Channel Islands and in Australia. BEA's Epilepsy Research Fund Report launched at the House of Commons by Lord Zuckerman. BEA and the Department of Manpower Services ran a work preparation course for 19 young people with epilepsy. BBC half-hour documentary film based on the course.

1982
MOH launched National Epilepsy Week. BEA successfully campaigned for a major change in the driving regulations, which meant that people who had been seizure free for two years (instead of three) could now apply or reapply for a driving licence. Also, people with an established pattern of three years' sleep seizures only could now apply for a driving licence. BEA co-sponsored the 14th International Symposium for Epilepsy in London with the International League Against Epilepsy.

1983
BEA motor vehicle insurance and BEA travel insurance schemes introduced.

1984
BEA lobbied Department of Health and Social Services (DHSS) about proposal to restrict availability of certain drugs on prescription - this secured revision of proposals. BEA campaigned with MIND to amend the 1964 Criminal Procedure (Insanity) Act following the Sullivan v Regina Appeal in the House of the Lords.

1986
BEA moved HQ to Leeds. After lobbying by BEA, a Transport Act was passed, which enabled local authorities to give travel concessions to people with epilepsy who had been refused driving licences on medical grounds. Further schools pack produced and sent to all educational centres and professionals.

1987
BEA presented paper on ‘Social Care Problems of Patients with Epilepsy’ in Poland.

1988
Duchess of Kent launched Epilepsy ‘88 for BEA. BEA's National Information Centre established and Epilepsy Helpline set up at the Irene Gairdner building at HQ. BEA expressed concern and lobbied government on changes to social security system after changes to the welfare grants scheme. Voluntary Contact Scheme established where volunteers could provide face to face information.

1989
BEA involved in joint campaign with British Diabetic Association and Asthma Campaign to provide information for education professionals.

1990s

1990
BEA service providing recorded telephone information on different epilepsy-related topics launched. Nearly 100 regional Action for Epilepsy groups now in operation. The Charter for People with Epilepsy launched at the 40th Anniversary Conference.

1991
As a result of hard work by BEA, the Law Society and other interested groups, changes to the Criminal Procedure (Insanity) Act 1964 gained Royal Assent. BEA launched new medical epilepsy journal Seizure.

1992
Reform of the powers of the courts in epilepsy-related offences came into force on New Years Day, following BEA's sustained lobby to remove injustice from the Criminal Procedure (Insanity) Act. BEA launched an electronic epilepsy information search service for professionals worldwide.

1993
BEA awarded £41,000 for the National Information Centre from the Roald Dahl Foundation. BEA contributed to the Department of Employment's ‘ability over disability' campaign.

1994
BEA and 40 other major charities launched national campaign to persuade MPs to vote for the Civil Rights (Disabled Persons) Bill – later to become the Disability Discrimination Act. BEA Chairman, Dr S Brown and Leeds MP, John Battle, announced the first standards of care for epilepsy services to the All Party Parliamentary Group on Epilepsy. BEA's Epilepsy Helpline became a freephone service. A change to the UK driving regulations meant that people with epilepsy or a history of seizures could now apply or reapply for a driving licence after a year of being seizure free (instead of two).

1995
BEA's 45th Anniversary and the Sapphire Nurse (epilepsy specialist nurse) project launched. The Department of Health launched National Epilepsy Week.

1996
Results of BEA's quality of life survey published. National Health Service Executive issued a document entitled ‘A Positive Approach to Epilepsy' to all relevant health agencies. Disability Discrimination Act came into the workplace. BEA staged an exhibition in the House of Commons.

1997
The Royal Society of Medicine hosted the launch of BEA's website and Under Secretary of State for Health, Simon Burns MP, became the first official visitor to the site.

1998
Ten Sapphire Nurses appointed, making a total of 31 in post throughout the UK. Education Working Group was established to address epilepsy related issues for schools and children. Lobbied film and TV production companies to introduce a policy about issues affecting people with photosensitive epilepsy.

1999 
BEA moved to new Head Office at New Anstey House in Yeadon, Leeds. BEA-Connect, an interactive internet-based community exclusive to people with epilepsy and their carers, was launched (now forum4e). A Vocational Certificate in Epilepsy was launched by BEA through Leeds Metropolitan University. 'WE can...' campaign introduced, to improve awareness of the special issues relating to women with epilepsy. The award winning video 'The Right Stuff' was produced and released.

2000s

2000
BEA celebrated its Golden Jubilee - 50 years of support and care for people with epilepsy. 'Agenda for Action' launched at the House of Lords, a detailed manifesto of what people with epilepsy need to improve the quality of their lives. Educational CD-Rom, Discovering Epilepsy launched, with the support of the Department of Health and the Department for Education and Employment.

2001
BEA Helpline was one of the first to be awarded the Telephone Helpline Association's Quality Standard Award. A member of BEA staff was appointed as the first lay member of the Secretary of State's Honorary Medical Advisory Panel on Driving and Disorders of the Nervous System. BEA provided support for the Westminster All Party Parliamentary Group for Epilepsy, which had highest ever number of MPs and peers. A multi-language booklet was produced to help people with epilepsy when travelling abroad.

2002
BEA introduced Epilepsy Action as its new working name. The name was intended as a positive, accessible identity for campaigning, education and advice and information.

2003
Campaign against the planned withdrawal of the drug Mysoline (primidone) resulted in the manufacturers guaranteeing production for another three years. Epilepsy Action developed a resource pack for GPs, to help them meet new quality markers for epilepsy care. Research funded by Epilepsy Action was carried out in Bradford: ‘South Asians and Epilepsy – Understanding health experiences, needs and beliefs’. Telephone translation service was launched, which enables the Epilepsy Helpline to provide information about epilepsy in 120 languages. Information pack about epilepsy in Urdu was published in co-operation with the National Society for Epilepsy and the Epilepsy Specialist Nurse Association.

2004
As a result of the Mysoline campaign, another manufacturer agreed to take over the production of the drug, for as long as it is needed. First annual Epilepsy Action Research Prize awarded. The ‘Take Control’ campaign launched. Epilepsy Actionawarded substantial lottery grant to expand its advice and information services.

2006
Epilepsy Professional magazine was launched. Less formal than a journal, the magazine provides a quick update on epilepsy from a professional viewpoint, together with feature articles, including contributions from well-known experts in the epilepsy field.