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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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