Diabetes and Healthcare – The patient’s experience
Pink magazine, published by Allied Newspapers Ltd., 2009
INSPIRED BY WORLD DIABETES DAY, AND THE FACT THAT ONE IN EVERY TEN MALTESE SUFFERS FROM THIS CHRONIC CONDITION, ANTHIA A. ZAMMIT CHRONICLES “MALTA’S NATIONAL ILLNESS”.
If you happen to encounter a woman injecting herself in a restaurant bathroom, or even at the beach, she’s not necessarily a junkie. It could simply be Marisa Tabone – wife, mother, career woman and living proof that a successful life with diabetes is possible. Doctors claim she is lucky to be leading such a healthy life, despite being a diabetic for 36 years. But she retorts she is not! “I work hard to maintain a well-balanced diet, especially where it is not so easy, like at parties…”
“I was diagnosed with diabetes when I was 10 years old after falling ill with a sore throat. Although I exhibited all the common symptoms, including weight loss and excessive thirst, the doctor failed to realise that I was diabetic and prescribed a sugary cough syrup. The outcome was devastating. I barely survived and spent 15 days in hospital after falling into a coma. It was a difficult time as I was only a young girl and all alone in hospital, but with the right food and vitamins, I slowly recovered.
The diagnosis changed my family’s lifestyle. Although initially my condition came as a shock to my parents, as no one in my family is diabetic, they adapted and made sure I took my insulin and only ate the right food. However, it was a time when far less patient information about the condition was available.
The availability of educational material and advances in treatment for diabetes have improved over the years. As an insulin-dependent diabetic, I have greatly benefited from a new type that allows me to inject it after a meal, instead of 30 minutes prior. Most importantly, it reduces episodes of hypoglycaemia, which occurs when blood sugar drops so low as to cause profuse sweating and uncontrollable shaking – it is literally the body’s starvation of sugar and usually happens in the middle of the night. Hypoglycaemia can lead to a coma and must be treated immediately. Its symptoms diminish over time, making frequent blood glucose monitoring essential. I might be doing housework and barely realise that my blood glucose level is too low – but a non-diabetic person would be lying unconscious on the floor!
I’m very aware of my condition and always cautious about what food I eat. I make sure to consume small portions every three hours and avoid sweets, cake, and chocolate. I also avoid snacking if my blood glucose is at its correct level. Having said that, frequent blood glucose monitoring is essential and, on occasion, I have had to eat a chocolate bar just to bring up the sugar level to normal if it has fallen too low. I check my blood sugar level three times a day before meals and am happy to say I manage to maintain it at normal levels most of the time. This requires great effort and determination, but I know I will suffer the consequences if I’m not careful.
Doctors tell me I am lucky to be leading such a healthy life, despite the fact that I have been diabetic for 36 years. I am not lucky! I work hard to maintain a healthy lifestyle and a well-balanced diet, even on occasions when it may not be so easy, like parties and weddings. Unfortunately, the food served at such events is not necessarily suitable for diabetics. I usually limit myself to one glass of dry white wine, as I wouldn’t know what ingredients the hors-d’oeuvres contain. It would be helpful if the ingredients in a dish and the exact amount of pasta served are detailed in restaurant menus. I must know the serving sizes and calorie content to correctly determine the amount of insulin to inject after a meal.
I carry my insulin kit with me at all times. It contains a syringe, alcohol pad and a phial of insulin. The only private space available is often the bathroom, which is not the most hygienic to prepare an insulin syringe. I have overcome the common feelings of trepidation at injecting myself in public places, and discreetly do so at a restaurant and even at the beach in summer.
My greatest challenge and achievement so far, however, has certainly been my pregnancy. I had a healthy girl at 30 and only stopped working six weeks prior to the birth. It is imperative that the blood glucose level is well controlled before planning to have a baby because those born of diabetics are notoriously larger in birth size, which can be dangerous for both mother and child. Special precautions must, therefore, be taken.
Once I got pregnant, I was put on a strict diet, my insulin dosage was adjusted and my blood glucose had to be monitored four times a day. I was also required to visit the hospital’s Diabetes Clinic on a regular basis. Hypoglycaemia is more severe during pregnancy, and on one occasion, I actually fainted at the clinic.
I went into labour a week before my due date, but thankfully, did not require a Caesarean. However, I had to spend an extra week in hospital, where both myself, and my baby, were kept under observation. It was difficult for me to see mothers come to hospital after me to give birth and leave before me, but I’m sure the precautions taken were for my own good.
I believe it is my duty to share my experience, especially with young people. As a teenager, I could only drink soda water at social events as there were no diet drinks available at the time. Adolescence is a difficult time for many individuals, but can be even more distressing for teenagers with diabetes. When I met my [now] husband on a night out and told him I was diabetic, he replied that he had never imagined that was the reason I drank soda water. He has been incredibly supportive ever since.
I do hope a cure for diabetes will be found in my lifetime, but I would have to be certain it would be successful before I accept to undergo the treatment, or procedure. Until then, I accept the fact that I am diabetic and will continue to do my best to adapt to my condition.”
ALTHOUGH FEW FIELDS OF MEDICINE HAVE SEEN SUCH EXPONENTIAL ADVANCE IN TREATMENT OVER THE PAST 25 YEARS, MALTESE DIABETES ASSOCIATION PRESIDENT ANNA ZAMMIT MCKEON FEELS MORE AWARENESS AND PREVENTION ARE NEEDED IF CHRONIC COMPLICATIONS CAUSED BY DIABETES ARE TO BE REDUCED.
“Affecting 10 per cent of the population, diabetes is often referred to as ‘Malta’s national illness’. However, out of the 40,000 believed to suffer from this chronic condition, only 1,000 are registered members of the Maltese Diabetes Association. This in itself is a perplexing cause for concern, as a comprehensive up-to-date patient register would prove invaluable to the early detection and diagnosis of complications brought on by diabetes. The needs of individual patients would be clearly identified and the association would have a stronger voice as a patient representation group.”
However, this is far from Anna Zammit McKeon’s main concern as she explains the hardships many patients face on a daily basis as a result of the expense of the new lifestyle that comes with diabetes. “Acceptance of the condition is crucial to proper symptom management. The negative implications associated with injecting oneself in public often lead to embarrassing situations for youths on a night out.”
“Currently, a patient over 16 must use a syringe with a needle instead of the pen, which is not yet accessible to all patients because the new type of insulin is only available in phials from the hospital pharmacy, she explains. There are numerous advantages attributed to the pen as opposed to the syringe: it does not require preparation before use; the clicking sound, signalling the dosage, is beneficial to the visually impaired; and its discreetness allows easy use in public places. Furthermore, while a syringe is disposable, the pen can be used repeatedly as only its needle is thrown away.”
“Diabetes patients are only given 10 free syringes per month by the Maltese Health Department”, Ms Zammit McKeon points out. “This is terribly insufficient, considering it is unhygienic to use the same syringe twice – a diabetic must inject insulin four, or five times daily. Last year, the Health Department gave out 145,000 syringes for drug use alone”, she adds. “The blood glucose monitor is purchased by patients and the strips to test blood are given free until they are 36 years old, at which time they must return the monitor and purchase a new one, as well as the strips”.
“But diabetes does not end at 36. It is a chronic condition and there is no cure”, Ms Zammit McKeon insists. “Patients live with the condition for the rest of their lives. Providing a blood glucose monitor and strips free of charge would allow patients’ glucose level to be controlled, limiting long-term complications, which include poor eyesight, kidney disease, leading to renal failure, and nerve damage and poor circulation, causing blistering and sores in legs and feet”.
“The focus is markedly on treatment, rather than prevention of the condition and its complications, evidenced by the low priority to health education and physical exercise in schools”, Ms Zammit McKeon continues. “Malta lacks a comprehensive health education programme; it does not form part of the national curriculum. It is entirely at the discretion of the school head to educate children about health conditions, such as diabetes”, she notes.
“Furthermore, children do not partake in physical activity for the minimum one-hour a day as recommended by the World Health Organisation. As a result, childhood depression and obesity remain astronomically high – an unfortunate situation, given that preventive measures could substantially reduce one’s predisposition to chronic conditions, which although subject to genetic determination, are profoundly determined by environmental factors”, Ms Zammit McKeon maintains. “Treating chronic conditions, such as diabetes, high blood pressure and high cholesterol, places great strain on the nation’s resources, and yet the cost-effectiveness of prevention is not fully appreciated”, she continues.
“The promotion of healthier lifestyles is fundamental to reducing the incidence of diabetes on a national scale. Patient empowerment is part and parcel of good symptom management, and the Diabetes and Endocrine Centre at Mater Dei Hospital hosts weekly lectures, while the association is starting monthly educational talks at the Grand Hotel Excelsior in Valletta. It also hosts an annual summer camp for children between five and 18, who are taught about daily personal care, and how to self-inject insulin. The objective is to help them accept their condition and encourage them to be independent, and the experience is beneficial to their self-esteem as they realise they can participate in fun activities just like others – provided they monitor themselves”.
“Despite recent efforts at increasing public awareness, stigma is still attached to diabetes”, Ms Zammit McKeon stresses. “Some families even request that the association newsletter and monthly circular are not delivered to their house because they do not want anyone to find out that a member of their family is diabetic. Many take their condition for granted as diabetes is so widespread. More than a lack of awareness, there is a lack of public acceptance of the seriousness of diabetes”, she believes.
“Primary care is, indeed, the most cost-effective and efficient prevention measure in the case of diabetic patients”, Ms Zammit McKeon says. “The diabetes specialist nurse allows the delivery of accessible community care to the patient and the achievement of higher standards of care”. Ms Zammit McKeon recommends more individual attention by introducing a psychologist at health centres, who would help patients and their families accept their condition, and a dietician to educate them on calorie counting, which is essential if they are taking insulin. “The health professionals at the clinic work wonders and examine a countless number of patients on a daily basis, despite the need for more resources and personnel,” she says.