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In 1971 Husne Ara, 2007
 
 
Interview 59 Husne Ara

Diabetes Lay Educator and family member. Also has diabetes.
Born in Bangladesh in 1953.


Overview: Husne Ara`s father was diagnosed with diabetes in Bangladesh in 1963. Although she was only 10, she gave her father his injections and became interested in diabetes. She came to England to get married when she was 17 in 1970. In 1990 she got a job as Diabetes Link Worker at the Royal London Hospital, to interpret for Bangladeshi patients in Tower Hamlets, translate information for them and educate her colleagues about cultural differences. She became a Diabetes Lay Educator in 2005 and runs courses for Bangladeshi people with Type 2 diabetes. She was diagnosed with diabetes herself in 2006.

Please note that Overview relates to date of recording 31 March 2007

 Short samples

1 When she started work, the dietitian said they must persuade people to avoid using ghee (butter) and Husne Ara explained that Bangladeshi people don’t use ghee because they eat fish, which cannot be cooked in ghee. They also eat large amounts of rice. [ 66 secs ]

2 Husne Ara’s mother was diagnosed with diabetes 14 years ago in Bangladesh, where there is no equivalent of the National Health Service and it is very hard for people with diabetes to afford adequate medication. [ 58 secs ]

 
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01 Father a vet. I stopped education at 16 – married & came to England. Father diagnosed 1963, when I was 10.
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02 Illness considered serious in Bangladesh. Father explained not so serious, but diet must change. Mother made us all change – I resented this.
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03 Father explained reasons. I took some responsibility for his diet. He went to Dhaka – long journey – only diabetes centre in Bangladesh.
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04 When started insulin, syringe & needle frightening. Father explained everything - I was interested. Insulin mixture. In lower leg – not advised now. He liked me to do injections – now advised to do it yourself.
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05 Father glad to share illness with me. Mother withdrew – just did diet. After I left, sister took over. After she married, he did injections. 1972 independence disrupted insulin supply.
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06 Donated insulin sold on black market. Re-used needles. I tested urine in tube over spirit lamp. He tested urine until 1977/8. I sent Refolux meter for blood-testing.
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07 At first thought father would die. Then realised he could work, but medication & equipment expensive - whole family affected.
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08 Out of £300 earnings per month, could spend £100 on medication - stressful. Mother diagnosed 14 years ago – can`t afford to take enough medication.
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09 Came to England 1970. English classes. Worked. 16 years at home with children. Did voluntary interpreting, sometimes at hospitals. Got contract working with health visitor at child health centre…
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10 …in Tower Hamlets. Then job as diabetes link worker at Royal London Hospital to work with Bangladeshis in Tower Hamlets, 1990.
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11 People don`t understand link worker`s role – advocate and explainer. 6 months training at hospital, alongside consultant, specialist nurses etc. I owe job to DSN who tested me.
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12 After training, didn`t work alone. Interpreted at clinic, accompanied nurses into homes, sometimes taught urine testing on own. No diabetes centre. Most work in homes – starting on insulin. I did phone follow-up. Eventually did visits on own. Conveyed information between patients & nurses.
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13 Diabetes centre opened 1993. More involvement in doctors` clinics & started link workers` & nurses` clinic. Community visits reduced. Started insulin at centre. Now home visiting stopped. Better for people to come to clinic.
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14 Patients mostly from Sylhet district. At first 70% didn`t speak English. Couldn`t understand my role, but came to accept me. When insulin prescribed, 75% didn`t want it. Hard to explain. Now I`m more experienced & people more knowledgeable.
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15 Many illiterate, especially women. Could recognise numbers 1 to 4, so used these as codes for urine test results. I drew different tablets & sun or moon to indicate morning or evening dosage.
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16 When people afraid of insulin, I used empty syringe on myself or them.
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17 Group education mixed. Group starting on insulin – men & women separate. Give women different examples of exercising.
Separate link workers` clinic – blood testing. 5 meters donated – lent to those new to insulin.
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18 Patients seen for years - HbA1c still high. Bengali leaflets - but many couldn`t read or could only understand Sylhet. From 1994, produced 10 short videos; then together in single video.
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19 Still using video – English, Bengali & Sylheti.
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20 Fears I wasn`t qualified to do classes alone, but got approved - well attended. Now do course called HAMLET, like DESMOND, for Type 2s.
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21 Most retired or unemployed, but will run courses for employed. Also, write to employers to ask for time off. Course simple. Two days re diet…
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22 …& exercise & Ramadan fasting. Qur`an exempts pregnant…
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23 …or ill. I teach re exemptions & tell patients to decide & seek advice. Good idea to educate imams re diabetes.
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24 Asians have bigger waists. Women don`t exercise. Bangladeshis used to eating rice. We don`t eat variety of fruit…
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25 - in Bengal only 1 fruit per season. Women don`t go out – Men shop. Need home-based exercise. I educate professionals.
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26 Previously saw patients with nurses – starting insulin & blood testing. Now I`m Lay Educator - do whole education alone. Baseline tests before course, then after 6 months – improvement due to changes in lifestyle. Seen again after 12 months. I translate materials.
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27 Once a week gives time to make changes between sessions. Exercise most important. How much fat to use in curry.
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28 Lucky I knew re diabetes from parents. A year ago, I was diagnosed – helps me understand more.
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29 Now 4-day courses at GPs` surgeries.
Also teaching illiterate patients to interpret food labels.
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