Symptoms - I had been experiencing symptoms for about 18 months and I had been seeing my GP for over a year with various symptoms but no one did a test. I was literally on the floor, sleeping during lunch breaks in order to get through the afternoon’s work. I was drinking everything
Diagnosis - Eventually I was diagnosed with diabetes in September 1983.
Voice- Systematic account of the poor delivery of diabetic care following initial diagnosis One of my staff at work who had been diabetic for along long time said to me, you better go and see the occupational nurse. The nurse did the usual urine test and said by the look of this dark urine you could be dead. I saw my GP that same night he was a different character sitting up and taking notice.
Health service - Diabetes clinic - My GP has now taken over but was used to a multi-cultural service.
Self-management - I was put on a very severe diet, I could hardly eat anything but I stayed on that diet for about year and things improved dramatically. I don’t think the medical profession gave any thought to the psychological effects of being diagnosed, suddenly being told ‘You can’t do this and you can’t do that, you can’t have this, you can’t have that. It affects you in so many ways. You have to stop and think about when you eat, how you eat and you must do all these tests. They never pointed out the effect it could have on your eyes, gums or your feet.
Complications – visual impairment I have lost peripheral vision because all of that lasering. It prevents more blood vessels forming and maybe attacking retina. I have lost peripheral vision because all of that lasering. It prevents more blood vessels forming and maybe attacking retina.
Knowledge – Education - one or two of the people had ‘severe’ diabetes so from speaking to them; I learned that I had to look out for certain things.
Initiating treatment - I went on insulin in 2000 at my instigation. You have to be your own doctor. I have experienced so much.
Genetic predisposition - My father must have been in his late 30s, he developed what we know in the Caribbean as ‘a touch of sugar’. ...and cousins on father’s side – predisposition to the illness
Strength - Demonstrates strength of character, stoic, strong, fiercely independent, self-sufficient, strong coping skills, religion plays a role I come from a line of strong personalities and the women in both families have been very strong, strong minded even strong willed but determined to see things through and that was the way my parents brought me up as well.
Medical management - Complex diabetic regime. Struggles to make sense of latest physical developments but knows things are not right. I am not happy at the moment because one type of slow acting insulin is not working the way it should. Yesterday it was 10 something. I can’t explain it. Now I am on five injections four times a day I’m running out of spaces.
Expert - I feel I am really on my own right now because the GP doesn’t know much about diabetes; he used to argue with me until three to four years ago. UK- When I came to London in 1962
Work - Trained as the first wave of overseas managers
Trail blazing - I kept thinking that people will come after me; I don’t want them to go through what I am going through.
Being Guyanese - I have six nationalities running through me. We all look different.
Guyanese diet - The diet in Guyana was quite healthy. Root vegetables, lots of greens, beef, fish, fruit, plantain, cassava, yams, tania, eddoes, pablum, a sort of porridge. We used evaporated milk which is good but got lots of sugar but we were not aware of the problems.
Lifestyle change at work in UK - lovely crusty rolls and cheddar cheese and a nice slab of butter and coffee. steak and kidney pudding, potatoes, whatever soup and a sweet, etc Comparisons made between Western lifestyle and Guyanese lifestyle and differences highlighted.
Stress - Several losses occurring simultaneously leading to stress – aunt, sister and mother – shock work I went through some days when I could have put my coat on and walked out and never looked back, but I kept at it. There are stressful moments wherever you are. When my father died in 1979.In the middle of sorting out my mother’s situation with the Home Office my little niece got chickenpox and passed it on to me. The shock registers some little while down the line. The next thing I know Sonia has cancer and she died in 2004, exactly four months later my aunt died, she had cancer as well, at age 94. Then my mother died a year ago last February. Before she died she had dementia and I ended up looking after her.
Marjorie’s significant statements
Diagnosis - Ten years ago
Diagnosis - Shocked when diagnosed, diabetes like the end of the world.
Medical management - oral medications hypoglycaemics
Health Service – Diabetes Clinic
Knowledge - Diabetes genetic- is ‘fat’ but did not connect diabetes to lifestyle. Information contradictory UK/Guyana.
Self-management - So in that first year I learned to live with diabetes: I suffered with diarrhoea and I am pretty certain it had to do with the Metformin, but once I changed my lifestyle and started on the diet, eating smaller portions, having breakfast, lunch and dinner I felt I had more control. I know what I am doing; I can have cake if I want. Since 1999, I have made a lot of changes, mainly in my diet.
Transition - Learn to live with it. Lifestyle changes so you have to change with it. A similar thing occurs when you have diabetes you have to change with it otherwise you will be unhappy. I have had practice in adapting from Guyana to England.
Complications – hypertension
Health Promotion – Targeting family members that she think might be at risk
Guyanese - As Guyanese living in England we tend to stick together,
Guyana – Good memories – romanticised! I missed the sun, sea, friends and all the privileges too. Loves the food but has had to restrict her diet but still eats pepper pot, chow mein.
Guyanese diaspora – Maintained contacts
UK - I came to England at the age of sixteen. In England I came at the worst time when we had that fog and smog. It was a totally different world so it was strange and it was fun but sad as well.
Racial tensions - I was used to being the one on top in Guyana and then I came and I became the one underneath. Yes it was a reversal of roles.
Social preference - I would prefer to meet with a Guyanese group of women who are diabetic because you also have the other unique point of interest (cultural?)
Stress - Sometimes I wonder whether the diabetes or the blood sugar level is affected by other factors such as stress especially if you are stressed at work.
Strengths- I enjoy the little things in life before I die.
Medical management- I started with two Metformin, one in the morning and the other in the evening. I don’t like taking tablets but I do.
Health Service – I manage my diabetes with assistance from the Diabetic Nurse with whom I meet every six weeks. Lack of equipment to test, has to buy her own.
Knowledge-I used to have a diary to manage my diabetes and wrote a page every day but decided this year that I would take control. I try to have a lot of leafy green vegetables and water based fruit because that is what the body needs, more water. I know I can take care of myself. One of the best things I attended was my six week diabetic course because they gave me a book and the course was really instrumental in helping me to identify the foods that I could eat.
Self-management - I don’t worry about my diabetes. People ring me up and say how are you? I say ‘I’m fine’.I regularly check my glucose levels Getting diabetes was something extra that came along as I already self-managed fibromyalgia and arthritis Alternative medicine- my mother sought help from an alternative practitioner who was a qualified doctor called Nigel and he gave my mother herbal medicine that improved her eyesight and her diabetes. Has hypertension.
Transition - With friends we could talk about roti and curry, patties and all the Guyanese foods that I missed. I was mainly eating English food because I never cooked my traditional foods. As Guyanese we travel great distances to see each other. This happens regularly in countries such as Canada and America. My cousins travelled from Scarborough to Ottawa to attend a barbecue. We just love to socialise with each other and rarely worry about how far we need to do this.
Spiritual – Buddhist. I chant when I have a problem.
Guyanese - In Guyana we ate very well and were quite healthy
Guyana – Good memories – romanticised! Although had a very English upbringing with a beautiful home, lovely cushions, table cloths, china, silvers and lamps. Left due to the political upheaval.
Guyanese health beliefs - We regularly took medicines like Scots Emulsion, cod liver oil, cascara or castor oil, senna pods and everything, and we ate vegetables, fish and meat He would make us cough mixture, honey, glycerine, and would tell us, ‘if you keep your stomach clean you’ll never get sick’ so I have held on to these beliefs. I have a lot of support from Guyanese friends with whom I talk regularly.
UK - I came to England May 1962, it was cold and foggy at the age of twenty four. I remembered I used to live in Balham with my aunt but when my mother and sisters came the next year we got a house in Kent, so I used to go up on the train there. We had a lot of fun.
Strengths -I did not want to take any more tablets so I said to the nurse “I’ll bring it down”. I am quite determined.
Bea’s significant statements
Diagnosis - Eventually diagnosed - should have been picked up earlier. Why the delay?
Diagnosis – 20 ago
Medical management - Diet-hypoglycaemic medication and now insulin
Health Service – GP
Symptoms – Did not experience any, tried hard to keep to a diet and keep weight off due to family history.
Knowledge - Aware how to avoid of hypo and hyper glycaemia.
Self-management – Learn to live with the complications – careful with diet I really try hard not to put weight on, eat sugar, I don’t do this and I don’t do that and I try to lead a healthy life
UK - Guyanese nurses wanted 1950s/60s. Wanted to be a nurse so applied.
Work – midwife then lived abroad but returned to UK.
Racial tensions - 1960s
Trail blazing – first black person to be appointed for the job as community midwife
Stress - I believe stress can have an effect on you. I enjoyed my work but it was very hard and stressful.
Fear – diabetes, mother and father died in their sleep
Strengths - I took control
Jane’s significant statements
Diagnosis - 2000, 10 years ago
Symptoms - none but was aware of them
Medical Management – diet and during the first year given metformin, then insulin to take due to hypoglycaemic comas at night
Health Service – Sees consultant every six months
Knowledge – Was aware of the genetic link with diabetes because father and grandparents died from the condition. Took prevention action by checking regularly with GP before finally being diagnosed. Used to attend diabetic classes but stopped. Receives a diabetic magazine but has not found time to read them.
Self-Management – Has a routine, simple diet, eat a lot of salads and some of her Guyanese foods, do not ‘over eat’. Exercises regularly and attends tea dances. Made lifestyle changes.
Family history – father and grandparents had diabetes, from Chinese background.
Spiritual – Attends church regularly. Is a devout Christian and believes in God
Guyana – Comfortable life as a child but did not get a good education, left school at 14.
UK – Came to England in 1973 with son due to the political scene in Guyana, difficult experience initially due to the type of work available but the found a reasonable job in a large department store. Settled down to life in the UK but socialised with the Guyanese community.
Guyanese diaspora – Very active in the Guyanese community, arranges dances and has many contacts in the UK. Involved with son and family and with step siblings abroad.
Support – From family and a lot of friends. “If you stay here long enough, the phone will start ringing and won’t stop”.
Losses – Sister died of cancer overseas. Very upset when she received the news.
Strengths – Demonstrates strength of character, has taken control of her diabetes, expressed reluctance in joining the group as has a very busy lifestyle perhaps contributed to diabetes.
Shirley’s significant statements
Diagnosis – Eventually diagnosed in 1998, 12 years ago.
Diagnosis – Delayed diagnosis after seeing the doctor on several occasions. Shocked- like end of world
Symptoms – Recognised something was wrong , tiredness, blurred vision and losing weight rapidly
Medical Management – Metformin, things are different when first diagnosed to now 10-20 years .
Health Service – GP
Knowledge – Recognises that she needs to keep diabetes under control so test glucose levels on a regular basis, obtain information from balance magazine that she reads and son is a scientist.
Self-Management – Changed diet post diagnosis if not got a hypoglycaemic coma, used to be an erratic eater. No longer follows a proper Guyanese diet but eats peas and rice and cassava occasionally. Aware of the co-morbidities of diabetes e.g. heart problems. Made lifestyle changes. Testing sticks expensive, not free, a problem for many hence no testing.
Complications – hypertension, degenerative disease affecting all organs in the body
Family history - none
UK – Came at 23 to join husband and studied to be a teacher.
Work – Teacher, head of English Department, enjoyed teaching but became stressed with OFSTED so retired.
Emotional issues – Problems with marriage as husband worked overseas so got a divorce
Spiritual – A Methodist all her life but still attends Methodist church in UK. Praying helps.
Guyanese Diaspora – Active in the community, helps out at a club.
Feeling Low- Sometimes gets a low unexplained feeling, difficulties managing a long-term condition
Voice – Recognises the need for a more holistic service under one roof rather than having to attend podiatry clinics or retinal screening elsewhere. So many things to check – feet, eyes, you have to aware of these things yourself, take control. Doctors are blinkered, only see diabetes, need to be reminded about doing other tests e.g. kidney, liver.
Predisposition – Problems with black people with kidneys problems – needs another way to test
Strengths – Assertive lady and determined to take control of her long-term condition
Agnes’ significant statements
Diagnosis – 2007, 3 years ago
Diagnosis – Delay in diagnosis even though she was convinced that something was wrong, had to convince the GP. Shocked when she received the diagnosis.
Symptoms – Dizzy and blurred vision
Medical management – Diet, metformin and attendance at diabetic classes
Health Service – GP clinic
Knowledge – Attended diabetic classes, introduced to certain classes and told to eat less carbohydrates but more greens and the need for more regular exercises every day. Was given leaflets and books to read for example, case studies but haven’t read them recently.
Self-Management – Diet varies but normally eats less fried foods and does not follow a full Guyanese diet. Had to change lifestyle. Visits the clinic regularly for check-ups, weight is monitored, blood is checked and everything else.
Family history – Son has Type 1, husband had Type 2 before he died and twin sister Type 2
Alternative medicine – Husband and so used herbal remedies and herbal sticks from Guyana. Tried cinnamon water and okra juice but prefers to only take prescribed medication.
Feeling low- Not depressed but has ‘off’ days. Lonely following death of husband so has been tearful. Son visits and niece sleeps at her house.
Spiritual – Church helps her to relax. Has faith in God and God heals, keeps her going.
Guyana – Became a politician in the Guyana government when Forbes Burnham, Prime Minister was in power. Enjoyed the political life. Met her husband during that period and married him.
Guyanese Diaspora – Very active in the Guyanese community, on several committees, organises dances and attends many church events that fills up her day. Visits relatives on frequent bases that live abroad.
UK – Came to the UK to join her husband in 1977.
Guyana – Aware of the work re diabetes that had been going on, has a diaspora contact
Work – Admin for the local housing benefit office, job was a bit stressful but satisfying
Strengths – Very active lady who enjoys socialising with the Guyanese community – stayed connected.
Jillian’s significant statements
Diagnosis – 2002, 8 years ago
Diagnosis – Failed to recognise what was happening to her, a relative noticed loss in weight, took a reading of her blood glucose level and suggested she made an appointment to see her doctor. Surprised at being diagnosed.
Symptoms- None, did not have the usual ones like feeling thirsty
Family history – Yes, parents, two sisters, and husband with Type 2 and daughter with Type 1.
Medical management – Metformin, Glimepiride and Beretta to lose weight.
Complications - Hypertension
Health Service – Diabetic nurse at the hospital, followed up.
Self –Management – Follows a routine diet which consists partly of Guyanese foods. Had to change lifestyle. Monitors her diabetes closely by taking blood sugar levels regularly.
Knowledge – Information from Balance magazine, gets in touch if needs to.
Guyana – Good memories of life there, felt it was wonderful with servants and a large house.
UK – Came to England in the cold in 1964 and did not like it. Lived in a flat. Noticed a change in their circumstances so had to learn to live with the transition. Situation improved when they bought a house in a friendly neighbourhood. Husband was a diplomat so spent time living abroad and went back to live in Guyana for a period of time but then returned to UK in 1981.
Work – Admin for a small manufacturing company.
Guyanese Diaspora – Has stayed connected with Guyanese roots, attends reunions in UK and abroad and visits family members in UK and abroad
Support – Receives support from two daughters and a son who live near her.
Emotional Issues – Difficult and stressful relationship with her husband throughout their marriage, unfaithful, impotent, diabetes but cared for him when he developed dementia. Married for 51 years when he died in 2011 in a nursing home as she could no longer care for him.
Strengths - Enjoying life now, “can come and go she likes” enjoys the freedom.
I then wrote up the commonalities based on the significant statements for the eight participants. These are described as constructs:
DIAGNOSIS – women conveyed various experiences in receiving a diagnosis with three of them experiencing a delay – Vera, Shirley, Agnes, Marjorie and Bea
SYMPTOMS – nearly all of them were experiencing symptoms such as dizziness and drinking copious amounts of fluid except Jillian and were aware of them but the presenting symptoms were unrecognised by their GP
FAMILY HISTORY – nearly all the women had a family history except Shirley
GATHERING INFORMATION – lack of information/education except Pam and Shirley
SELF MANAGEMENT – focused on this and use of alternative therapies by some of the women.
EXPECTED LIFESTYLE CHANGES – women were learning to live with diabetes and it meant disengaging from old habits
COMPLICATIONS – all women were experiencing complications.
RELIGION/FAITH – this played a key role in helping them to cope with diabetes
DEPRESSED/FEELING LOW – experienced changes in mood
STRESS AND DIABETES – some of the women believed stress caused their diabetes, Vera, Bea, Marjorie and Agnes
Being GUYANESE – talked about their previous lives in glowing terms
PREOCCUPATION WITH FOOD – they loved to eat their traditional food
MAINTAINING CONTACT WITH THE DIASPORA – this was a survival strategy.
