Redhotcurry - Health. Study reveals South Asian Perceptions on Epilepsy

A study funded by Epilepsy Action has revealed that lack of information, language barriers and stigma are the main areas of concern for people with epilepsy from South Asian communities. The report of the main findings of the study - carried out by the Health Services Research Unit and lead by Professor John Wright at Bradford Teaching Hospitals NHS Trust was launched on December 1st 2003 at a special meeting in Bradford.

According to the report people with epilepsy from South Asian communities were very positive about the specialist services available in Bradford and Leeds but complained about a lack of culturally appropriate information materials at the time of diagnosis and at consultations with their GP.

Another major complaint was the lack of availability of interpreting services when seen by health professionals. One third of the patients involved in the study were not fluent in spoken English and were sometimes forced to rely on family members translating for them when seeing their doctor. This can be embarrassing and restrictive particularly for female patients relying on children or male relatives and raises the issue of patient confidentiality. Dr Nigel Hakin, Consultant Neurologist for Bradford Epilepsy Service agrees:

"This is not an ideal situation and makes it hard to assess the impact epilepsy has on a patient. Cultural and language barriers also raise another area of concern. There also appears to be a lower than expected reported prevalence rate of epilepsy in the Asian community1. The fact that so many Asian patients are unable to communicate with their doctors could mean that their diagnosis is being missed. We need impartial interpreters but unfortunately the resource just isn't there."

The report also shows that stigma and misconceptions surrounding epilepsy are still a major problem in South Asian communities and there has been little change in attitudes over the last 30 years. Although the South Asian community can potentially offer a strong network of support to those diagnosed with epilepsy, it can also mean stigma is more of an issue. People felt shunned and isolated from their wider community due to an outdated fear of 'catching epilepsy'. It was also felt that the condition could have a serious impact on a person's desirability for marriage.

Mrs Aneela Nadeem a 29 year old Muslim woman from Bradford said: "No one wants to marry a person with epilepsy as they think it's too much trouble as the person may be suffering from seizures quite often and not be able to look after themselves or provide for their family. Also people think if they have children with someone with epilepsy the kids are sure to inherit it. Some people also feel uncomfortable going near a person that's having a seizure as they think its something to do with spirit possession. Not everyone but some people still have these beliefs"

Another surprising finding was the high number (over half) of respondents turning to alternative therapies if their seizures were not controlled by anti-epileptic drugs. Mainly two forms of traditional South Asian therapies were used, religious healing and herbal treatments. All those who had used other therapies had seen no improvement to their seizure control and had continued to take their prescribed medication.

Finally the report highlights the need for local support groups in different communities and bilingual liaison workers who are aware of the cultural issues South Asian epilepsy patients face. Monica Cooper, Epilepsy Services Manager, Epilepsy Action says: " Community education and culturally specific information materials are vital in order to help de stigmatise epilepsy and remove many of the myths that still exist within South Asian populations. Cultural and language barriers may prevent patients accessing epilepsy services. To date we have produced in collaboration with the National Society for Epilepsy, an information pack in Urdu designed to help Health Professionals overcome language difficulties. We are planning similar resources in Punjabi and Bengali in 2004."

Further details of the report South Asians and Epilepsy: Understanding the health experiences, needs and beliefs in communities in Bradford are available on Epilepsy Action's website www.epilepsy.org.uk. For confidential advice and information on any aspect of epilepsy contact Freephone Helpline on 0808 800 5050. Language Line is also available enabling epilepsy information to be given in up to 120 languages.

About epilepsy

Epilepsy is the most common serious neurological condition in the UK. 1 in 20 people will have a seizure at some point in their life. Epilepsy can affect anyone, at any age, from any walk of life. There are approx 3,500 patients with epilepsy in Bradford of which out of a South Asian population of 85,500, approx 300 are South Asian (prevalence rate 3.6/1000).