You have been diagnosed with diabetes and, in the absence of any medical breakthrough resulting in a cure, you will have this condition for the rest of your life. Your continuing good health is dependant on understanding your diabetes, your rights and your responsibilities.
The International Diabetes Federation (IDF) has identified three basic rights that you are entitled to
- You have a right to diabetes education.
- You have a right to receive the treatment required for good health and survival.
- You have a right to be a partner in your own treatment.
Education is a basic human right for people with diabetes. Access to diabetes education is inscribed in the United Nations Declaration of Human Rights. Diabetes education is an important component in the management of diabetes, along with a controlled diet, physical exercise, and access to good medication and care.
Diabetes education should give you an extensive knowledge of diabetes, its complications and treatment, the practical resources required for self-care including an ability to self-monitor, a positive attitude and self awareness.
You need to take an active role in sharing responsibility for your care and management of your diabetes. Diabetes education means education for all, and it should include your family.
It is vital that people with diabetes receive the treatment that they need for good health and prevention of complications. Action taken early in the course of diabetes is more beneficial in terms of quality of life and is more cost effective, especially if this can prevent hospital admission.
There is now clear evidence that good control of blood glucose levels can substantially slow the progression of diabetes and substantially reduce the risk of developing associated complications. The management of high blood pressure and raised blood fats (lipids) is equally important.
If you have Type 1 diabetes you will need insulin therapy. If you have Type 2 diabetes you may need tablets to help you regulate your blood glucose levels. You may also need insulin injections at some stage to help you control your diabetes. This should not be considered as a response to bad behaviour or failure on your part. It may simply result from the progression of your diabetes.
Conventional treatment of diabetes involves combining a healthy eating plan, physical activity and the right medication. Achieving a balanced treatment regime is entirely possible but often difficult. It takes a lifelong commitment and is only possible if you have had adequate diabetes education. Factors which can affect this balance include infections, illness, stress or surgery.
Diabetes differs from most other medical conditions in one significant respect: you have a central role in your diabetes treatment and you must make decisions that have an impact on your health. In many other conditions, the person affected is merely expected to follow their physician’s instructions and take medication as prescribed.
To allow you to take this central role in your treatment you have the right to be treated as an equal partner in deciding on your treatment.
You should receive all health services without discrimination because of age, lifestyle, gender, ethnicity, religion, disability, sexuality or your ability to pay. You are entitled to receive a copy of important laboratory tests and reports, and any agreed goals.
Your healthcare professionals should
- Treat you with respect and dignity.
- Treat you with skill and care, and regularly review your clinical needs.
- Answer any questions about the quality of the services you are receiving.
- Provide an interpreting service if English or Maori is not your first language and you feel this is needed, or if you have a sensory impairment or learning difficulties.
- Provide information about local health and support services and how to contact them.
- Keep you up to date about your condition, its care and treatment (and give you access to a second opinion).
- Be up-to-date and use evidence-based clinical practice.
Your diabetes healthcare team
To achieve the best possible diabetes care, you need to work with healthcare professionals and be a member of your diabetes healthcare team. It is essential that you understand your diabetes as well as possible so that you are an effective member of this team.
You need to discuss with your healthcare team the roles and responsibilities of those providing your diabetes care and to identify the key members of your diabetes team.
As well as you, the members of your diabetes healthcare team may include
- Your family, whanau or caregiver
- General Practitioner (GP)
- Practice Nurse
- Diabetes Nurse/ Diabetes Nurse Educator
- Diabetes specialist (Diabetologist)
- Other health professionals, such as a Midwife for gestational diabetes
- Diabetes support organisation, eg Diabetes New Zealand, or your local diabetes society/support group
You may need to see some members of your team more often than others.
Your annual diabetes review
It is important for all people with diabetes to get an annual check up with your GP or practice nurse, or your specialist (your GP or specialist may recommend you have more regular check ups). Your annual review is to enable you to lead a normal and healthy life. It must be about what you want and need as well as what your healthcare professionals recommend.
The following laboratory tests should be part of your annual review
- Blood glucose control: an HbA1c blood test will measure your long term blood glucose control.
- Kidney function: urine and blood tests to check for protein will show that your kidneys are working correctly. There should not be any protein in your urine.
- Blood fats (lipids, cholesterol and triglyceride levels): a blood test that measures your blood fat levels.
What is normal ranges from person to person. If you have any questions, ask your diabetes healthcare team to explain.
Blood pressure should be taken. Keeping your blood pressure down is important for people with diabetes. If it is at higher levels than considered appropriate, then this should be discussed with your diabetes healthcare team.
Weight is often calculated as a Body Mass Index (BMI) and your GP will record this. You will be advised if you need to lose weight to better control your diabetes.
Feet should be examined to check your skin, circulation and nerve supply. If necessary, you should be referred to a podiatrist.
An eye examintion at least every two years, where your pupils are dilated, will assist your optometrist/ophthalmologist to detect any early changes in the back of the eyes (retinopathy). Photographs will be taken to record the appearance at the back of your eyes.
The annual review should also provide sufficient time to discuss:
- Your general wellbeing and how you are coping with your diabetes at home, work, school or tertiary institution.
- Your current treatment.
- Your diabetes control, including your self monitoring results.
- Any problems you may be having.
It should include discussion about smoking, alcohol consumption, stress, sexual problems, physical activity and healthy eating issues. You should feel free to raise any or all of these issues with your diabetes healthcare team.
Effective diabetes care is normally achieved by good team work between you and your diabetes healthcare team. Looking after your diabetes and changing your lifestyle to fit in with the demands of your diabetes is hard work, but you are worth it.
You will not always get your care right, none of us do, but your diabetes healthcare team is there to support you. Ask questions and request more information especially if you are uncertain or worried about your diabetes and/or your treatment. Remember, the most important person in the team is you.
It is your responsibility to
- Take as much control of your diabetes on a day to day basis as you can.
- Learn about and practice self-care which should include dietary education, exercise, foot care, monitoring blood glucose levels and understanding the medication you are taking.
- Know when, where and how to contact your diabetes care team, to regularly talk with them and to ask questions about your care.
- Include the diabetes advice discussed with you in your daily life.
- Attend your scheduled appointments or reschedule any that you do miss.
Discuss any complaint that you have with your diabetes healthcare team, but also put it in writing. Each general practice and hospital will have internal procedures to deal with complaints. If you are unable to make a complaint yourself, then a relative or friend can do this for you.
If you receive your care in general practice and have been waiting longer than twelve months for your free annual diabetes check, contact your Primary Health Organisation (PHO). If you receive care in a hospital and have been waiting a long time for an appointment or a follow up appointment with a specialist, contact your GP.
A Creed for people with diabetes
- I am not sick.
- My diabetes is my responsibility.
- I must ask questions of my doctors and nurses.
- I want to know how well I am doing.
- I appreciate the help and support of my family and friends.
- I feel great when I am in control of my diabetes.
Diabetes New Zealand recommends that all people with diabetes adopt the following six point plan
- Take responsibility for the self-management of your diabetes.
- Understand what you need from your diabetes healthcare team.
- Prepare a diabetes management plan that meets your needs.
- Implement your diabetes management plan in your daily life.
- Be prepared to change your diabetes management plan as your circumstances change.
- Regularly review your diabetes management plan to ensure that it is still meeting your needs.