National Epilepsy Week - Changing Lives

Main Category: Epilepsy
Article Date: 12 May 2005 - 11:00 PDT

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A national membership survey, carried out by Epilepsy Action, the UK's largest member-led epilepsy charity, has revealed that one third of older people who responded have experienced stigma because of their epilepsy.

Older people are now emerging as the largest single group with epilepsy [2] and the theme of this year's National Epilepsy Week (15-21 May) is 'Epilepsy in Later Life'. The recent Epilepsy Action survey of members aged 60 and over also found that one third of older people who responded believe that epilepsy affects their relationships with family and friends. [1]

Broadcaster Angela Rippon commented: "As the Patron of Seizure Alert Dogs - a charity that works closely with people who have epilepsy - I'm aware of the devastating effect that the condition can have on people's lives. The older generation are most prone to feeling stigmatised and isolated within the community. A diagnosis of epilepsy can come as a complete shock and seriously affect a person's confidence and independence. I am very pleased that Epilepsy Action has launched this campaign to highlight the issues faced by older people, and that the charity is working to provide crucial information and support to those who need it most."

This picture of the problems experienced by older people with epilepsy is supported by the findings of a MORI Social Research Institute survey of geriatricians [3], also commissioned by Epilepsy Action. Of the geriatricians surveyed, 53 per cent believe that a number of social and psychological effects are more of a problem for older people with epilepsy than others with the condition. These may include lack of independence, lack of confidence and loneliness.

Sixty eight per cent of geriatricians recognise that physical effects are more of a problem for older people with epilepsy than others with the condition. These may include side effects from drugs/drug interactions, risk of injury from falls and confusion. In addition, the survey found that one third of geriatricians are unaware that NICE (National Institute for Health and Clinical Excellence) has recently issued guidance for the diagnosis and management of epilepsy.

The NICE guideline on epilepsy states that information on a range of issues should be made available to patients to empower them to manage their condition, yet older Epilepsy Action members highlighted a serious shortfall in advice and information. Nearly 40 per cent of respondents to the Epilepsy Action members survey [1] were not provided with adequate written information about epilepsy. This is despite the fact that older patients are particularly at risk of epilepsy drug side effects, and are more likely to experience cross-reactions between epilepsy drugs and other medications. [4]

As a consequence of stigma, many older people with epilepsy do not come forward to have regular specialist reviews and are resigned to the burden of unacceptable side effects and increased seizure frequencies. However, these can often be easily rectified and addressed by a specialist review. It is Epilepsy Action's belief that a change in attitudes towards epilepsy is essential before services can be improved and older people can live as fulfilling a life - with epilepsy - as possible.

Copies of Epilepsy Action's information booklet, 'New to Epilepsy in Later Life', are available via our Freephone Helpline, on 0808 800 5050, or our website, http://www.epilepsy.org.uk.

1. Survey of Epilepsy Action members aged 60 and over. The results are based on written questionnaires posted to a representative sample of 500 Epilepsy Action members on and around 22 March 2005. The closing date for the return of questionnaires was 29 April 2005. The response rate was 207 (41.4 per cent).

2. Old age is the most common time to develop seizures (Hauser 1992) and the number of patients diagnosed with epilepsy is set to increase dramatically over the next decade because of Britain's ageing population. Already approx 25 per cent of all new cases occur in this age group.

3. Survey of UK geriatricians (April 2005). Source: Market & Opinion Research International (MORI). The results are based on telephone interviews with a nationally representative sample of 103 geriatricians across the UK. Interviews were carried out from 19-29 April 2005. Data are weighted according to the national profile of geriatricians. Results that add up to more than 100 per cent are due to multiple answers. The survey of geriatricians was made possible by an educational grant from Pfizer Ltd.

4. Clinical Standards Advisory Group. Services for Patients with Epilepsy. 1999.

A front cover image of the booklet can be e-mailed upon request. We have numerous case studies willing to talk about their experiences. Please contact Ingrid Burns or Lucy Rollinson in the Press Office: 0113 210 8800 or email press@epilepsy.org.uk.

Epilepsy Action has around 18,000 members. As well as campaigning to improve epilepsy services and raise awareness of the condition, we offer assistance to local people in a number of ways including a national network of branches, regular regional conferences and a Freephone Helpline (0808 800 5050).

http://www.epilepsy.org.uk

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