People with Diabetes
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With daughter at time of diagnosis

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With daughter at time of diagnosis Julia, 2004 22. 01 2003 - DAFNE handbook cover
22. 02 2003 - DAFNE timetable 22. 03 2003 HbA1c record card for DAFNE follow-up 22. 04 2003 DAFNE kit
 
 
Interview 22 Julia

Person with diabetes
Born in Coventry in 1963.
Diagnosed Type 1 in Birmingham in 1989


Overview: Julia was the first member of her family to go to university, and she taught in a primary school before specialising in teaching dance. Between her diagnosis in 1989 and the recording of this interview in 2004, she spent time in hospital for a variety of reasons, including the births of her three daughters. The biggest changes she noticed during these years were the increasing role of specialist nurses and also a shift to patient control: at first she was automatically put on a drip, whereas later the staff began to trust her to manage her own diabetes.

Please note that Overview relates to date of recording 25 October 2004

 Short samples

1 As the busy mother of three children, she sometimes feels that having diabetes is like having another baby [ 57 secs ]

2 When Julia moved from Birmingham to Northumberland in 2003, her GP sent her on a week-long course known as DAFNE (Dose Adjustment for Normal Eating). She was delighted to discover that she could adjust her insulin to suit her lifestyle [ 58 secs ]

 
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01 Born Coventry. At 5, parents split up. At 9, Mum remarried – car factory foreman. Diabetes in family. Means-tested place at grammar school. Teacher training. Met husband - works for BBC. Taught primary. Began to specialise in dance. Recently moved from Birmingham to Newcastle.
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02 Married & left university, 1985. 4 years teaching primary, then dance. Diagnosed with diabetes in 1st pregnancy, 1989.
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03 Daughter born Sorrento Hospital. Diabetic care at Selly Oak Hospital. Diabetic health visitor key figure - helped me overcome needle phobia & understood pregnancy & diabetes.
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04 At first taught “exchanges” by sight, not numbers. Insulin adjusted to usual carbohydrate intake. At first, diabetic products OK, then discouraged.
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05 Advice vague until recent DAFNE course.
Pregnancy helped avoid self-pity re diabetes (though sometimes fed-up since). Control for baby`s sake. Medics wanted epidural; I didn`t.
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06 1 hour labour, no pain relief, no injections. Used breathing techniques. Diabetes caused unnecessary panic among staff during labour.
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07 Control not so good 2nd time – bigger baby born 1994. All 3 babies induced. At Sorrento less knowledge than at Selly Oak: midwife cut too soon.
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08 Care not connected between hospitals. Breastfed all 3.
Sweet tooth before diagnosis. Envy friend who controls effortlessly.
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09 “Atypical & unstable”. DAFNE suits lifestyle. Even before DAFNE, 4 injections gave flexibility. Some doctors moralise, but sometimes chocolate helps!
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10 Not disciplined personality. Diabetes dominates life of friend with good control. I fit diabetes around busy life.
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11 Tablets tried 1991: didn`t work. Happy to return to injections – suited irregular lifestyle. Actrapid, then Mixtard, now Humalog Lispro. Mixtard meant more hypos. Never comatose.
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12 At 1st, Mars bar recommended or glucose tablet, now orange juice. Daughter says diabetes terrible. Hypo during bedtime story. Always warnings. People who`d been on animal insulin lacked warnings, but I went straight onto Actrapid.
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13 Children know what to do.
When 2nd baby big, doctor muttered re poor control. 3rd baby smaller – more experienced re diabetes & motherhood. In 2nd & 3rd pregnancies, more unified care at Queen Elizabeth Hospital, Birmingham.
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14 More staff with knowledge of pregnancy & diabetes, regular HbA1cs, results quicker, fewer appointments, less stressful. By 3rd pregnancy didn`t go automatically on drip. Over 15 years, shift to patient control.
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15 With 3rd baby, 2000, I controlled diabetes (until emergency hysterectomy). Emphasis now on education & empowerment. Didn`t hear of DAFNE in Birmingham. Younger staff with different training.
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16 1989 - new diabetes specialist nurses. Sceptical of certificate after 6-week course. Diabetic health visitor more experienced. But nurses gained experience. Now, expert team. In 1990s, Diabetic Association leaflets described care to expect. Needle tips on prescription. Graph software. Podiatry at annual review.
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17 Keep retina photo to compare. My GP interested. DAFNE follow-up. Patient representative at surgery. Change in NHS to listening. Diabetics treat themselves.
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18 Wouldn`t want insulin pump, but would like wristwatch blood monitor. Can`t go long without thinking re diabetes.
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19 Began diary before 1st baby. Diabetes seems like 4th baby – always have to think of it. 1997 wrote “I`m fed up”. Don`t let it control life.
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20 Can`t be irresponsible – but better than other illnesses. Now more flexible. Sometimes I get on well with it, sometimes not.
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21 When moved to Northumberland, GP recommended week-long DAFNE course. Went to Hexham General Hospital, 2003. New to staff.
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22 In canteen, chose what liked, then made calculations. Calculations hard work & some people struggled but worth it. At first took ages…
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23 but became easier. I hate numbers, but saw improvement quickly. After 3 months, sent blood to GP & diary & HbA1c to nurses. Good relationship with nurses.
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24 HbA1c down. Calculations included many factors. 10 people on course – shared experiences.
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25 Changed to Lantus. Learnt from others. Felt lucky not to have others` complications, but knew I could one day. Learnt for 1st time how insulin works.
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26 Learnt detailed information on hypos, Glucagon, different kinds of exercise, comas – individual & general advice.
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27 Learnt wholemeal makes no difference to blood sugar. Found nurse & dieticians more useful than doctor re daily life. Learnt insulin after vomiting. Follow-up. A few members couldn`t continue…
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28 Health professionals accepted their decision. Farmers found it hard. Different groups for different people? Smaller doses of information? But continuous week good. Follow-up important.
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29 Built friendships. Shared problems. Variety of people good. Needed varied delivery? Continuity enabled study of day-to-day implications.
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30 Maybe specialist sessions spread out? Worth experimenting. Grateful it was available. Slipped back slightly, but empowered by knowledge. Insulin more user-friendly. Learnt re “compensation doses”.
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31 Never have week of perfect blood sugars. Hard to fit in DAFNE revision. After husband gone to work & older children to school, take youngest to nursery.
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32 Pick her up, have lunch, go to park. Worst time cooking for 4 of us before husband home. When food served, 1st chance to do blood sugars. Children want attention. Fewer evenings out in new place. Red wine!
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33 Peace after everyone in bed. Tired in morning. Just re-started dance work. Hope to do more – exercise good for health.
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34 Life wouldn`t have been different without diabetes. Going to chat to GP re being 40. Put long-term complications out of mind. Sometimes diabetes weighs on me…
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35 …but non-diabetics get complications too. Hopeful re future. Free prescriptions, pens & monitors. Pay more for insurance.
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36 Kept going by my Christian faith. Can live fulfilling life with disease. Spiritual support plus family`s practical support. Grateful I live now – dad`s mum`s mum died young.
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Transcript
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Extras
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