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of everyone affected by epilepsy

Study reveals South Asians perceptions on epilepsy

3 December, 2003

A study, funded by
the charity 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.

According to the
report from the Bradford
Teaching Hospitals NHS Trust
, 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 [local
doctor].

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 community.
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to an outdated fear of 'catching epilepsy'.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 27 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 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.

Monica Cooper, Epilepsy
Services Manager at Epilepsy Action, commented:

"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."