How do you know it’s time to break up with your healthcare team?

Living with type 1 diabetes (T1D) is a continuous journey that requires constant management and support. Unfortunately, some people with T1D encounter stigma and misunderstanding from healthcare professionals, who should be their allies.

Here’s how to address the challenges people with T1D might face in the healthcare system, as well as some tips on how to recognise when it’s time to seek new medical support.

What challenges might someone with T1D encounter in the healthcare system?

While healthcare providers are there to help and – obviously – provide healthcare, many people find that some are more equipped to provide care in a sensitive and caring way than others.

You might find yourself facing various forms of stigma. At worst, this can significantly impact the quality of your care and overall wellbeing. These stigmas often stem from misconceptions and a lack of understanding about T1D.

Some common stigmas include the following.

• Being blamed for blood glucose fluctuations. Your healthcare provider may unfairly criticise you for out of range blood glucose levels, not fully appreciating the complexity of T1D management. They might suspect you of not following your treatment plan, even when factors beyond your control are at play, or they may not understand the constant effort required to maintain the levels they want to see.
• Assumptions about your lifestyle choices. If your provider wrongly assumes that T1D is caused by poor diet or lack of exercise, getting it mixed up with type 2 diabetes, this is a red flag! Healthcare providers that aren’t diabetes specialists may confuse the two, leading to inappropriate treatment suggestions or advice about ‘reversing’ your condition through lifestyle changes. You might also face misconceptions about alcohol consumption or other lifestyle factors, leading to patronising and unwarranted lectures or advice.
• Dismissing mental health concerns. The psychological burden of managing T1D 24/7 is often underestimated or ignored, leading some healthcare providers to dismiss your symptoms of distress or burnout as straightforward non-compliance or lack of motivation.
• Judgement about your body weight or eating habits. You might face criticism for your weight, whether it’s ‘too high’ or ‘too low’, without any consideration of how insulin therapy can affect body composition. Your healthcare provider might also not understand the challenges of maintaining a balanced diet while managing blood glucose levels, or they might make assumptions about eating disorders without understanding the complex relationship between T1D and food.
• Oversimplification of diabetes management. Some providers may try to over-simplify your T1D management, suggesting that, if you ‘just follow the rules’, your blood glucose should always be stable. If only it was that easy!
• Age-related assumptions. If you’ve been diagnosed later in life, some healthcare providers may not believe you can have T1D, or you might encounter ageism when it comes to being able to use new technologies or treatments.
• Pregnancy-related assumptions. If you’re pregnant and you have T1D, you might find yourself dealing with excessive fear-mongering about pregnancy risks, rather than receiving supportive and informed care.

What are signs you may not be getting the best care?

Some indicators that you’re not getting the best care include the following.

• You feel like your concerns are consistently dismissed or minimised. Your healthcare provider might brush off your questions, downplay your worries about complications or symptoms, not take reports of symptoms seriously, or suggest you ‘toughen up’.
• Your healthcare team doesn’t listen to your experiences or preferences. If your provider doesn’t ask for your input about what works or what doesn’t for your own body and lifestyle, or if they dismiss your experience and preferences, you are not getting the best care. This is also the case if your provider dismisses cultural or dietary preferences in meal planning or insulin regimens.
• You’re not informed about new treatment options or technologies. Your healthcare provider may not be aware of the latest advancements in T1D treatment, or they may not discuss them with you. If you’re hearing of new treatment options from anyone apart from your healthcare provider, you might want to ask them why.
• You feel a lack of individualised care. Your treatment may feel generic and unrelated to your own specific needs and goals. If you’re being asked to change your work schedule, exercise habits, or other lifestyle factors to fit into a pre-set schedule, this is a sign you might need a more personal approach.
• You feel rushed during appointments. You might feel constantly hurried and like you don’t have the chance to explore health-related issues with your provider because they’re in a rush, or your follow-up appointments might be scheduled too far apart for your comfort.
• Your emotional needs aren’t being addressed. Managing T1D isn’t just about physical factors. There is a huge psychological impact that goes along with managing the condition – no matter how long you’ve been living with it. If your healthcare provider shows no interest in your emotional state, or if you’re made to feel like a failure if you’re not managing your treatment perfectly, it could be time to find someone else.
• Lack of coordination among your care team. It takes a village to care for someone with T1D! If your healthcare providers aren’t talking to one another and coordinating your treatment in a consistent way, this can lead to confusion and conflict.
• Lack of education and support. You have the right to expect comprehensive information about your treatment, and guidance on how to handle sick days, travel, or other special situations. Your healthcare team should be able to recommend support groups or provide educational resources for you.
• You’re not involved in decision making. You have the right to be involved in decisions made about your health and your treatment. Your provider should explain any treatment changes they’re recommending, and discuss the pros and cons with any treatment options with you.

What should a good healthcare relationship look like?

If you’ve decided to make the break and you’re looking for a new healthcare team, it’s important to ensure the move is a positive one. A good partnership is one that empowers you to live well with T1D, and it should include the following.

• Open, respectful communication. A healthcare team that practices open, respectful communication listens attentively to your concerns and experiences, explains concepts clearly without unnecessary jargon, and creates a safe space for honest discussions. They make you feel comfortable asking questions without feeling like you’re being judged.
• Collaborative decision making. Your healthcare team should ask for your input on your treatment options when there are decisions to be made, offering you balanced information on pros and cons. They should consider your preferences, lifestyle, and personal goals when creating your care plan.
• Recognising your expertise of living with T1D. Nobody knows what it’s like for you to live with T1D better than you do. A god healthcare team recognises that and acknowledges you as the expert in your day-to-day experiences, respecting your insights into how various factors affect your blood glucose levels. They take your self-management strategies seriously, incorporating them into your care plan, while valuing your problem-solving skills and encouraging you to trust your own judgement in managing your condition.
• Holistic care including your physical and emotional wellbeing. Holistic care goes beyond just blood glucose numbers and A1C results. Your healthcare team should also regularly check on your mental health and overall quality of life.
• Up-to-date knowledge of T1D management and technologies. Your team should stay informed about the latest developments in T1D care and be familiar with various insulin delivery systems and glucose monitoring technologies. They should be open to incorporating new, research-backed management strategies and provide education on emerging treatments and technologies that might benefit you.
• Encouragement and support for your self-management efforts. A supportive healthcare team celebrates your successes, offers constructive feedback when you’re struggling, and provides tools to enhance your self-management skills. They empower you to make informed decisions about your day-to-day diabetes care and acknowledge your efforts, even when outcomes aren’t perfect.
• Individualised care plans. Your healthcare team should tailor your treatment plan to your specific needs, lifestyle, and preferences. They can adjust the plan as your life circumstances or health status changes, taking into account things like your work schedule, exercise habits, and stress levels in management strategies.
• Proactive approach to care. Your team should work with you to prevent complications, not just react to problems. They should schedule regular screenings for complications and help you prepare for life events that might affect your diabetes management, such as travel or pregnancy.
• Cultural sensitivity. A culturally competent healthcare team respects and considers your cultural background, beliefs, and practices in your care plan. They understand how cultural factors might influence your diabetes management and work with you to find culturally appropriate solutions.
• Coordination of care. Your team should communicate well with your other healthcare providers and help coordinate your T1D care with the management of any other health conditions you may have.
• Accessibility and continuity of care. A good healthcare team is reasonably accessible for questions or concerns between appointments and has a clear protocol for handling after-hours emergencies. They provide consistent access to the same core team members, fostering your long-term relationship.
• Education and empowerment. Your team should provide ongoing education, keeping you informed about your condition and management strategies. They’ll support your efforts to take charge of your health, and offer resources for you to learn or find more support, if you need it.

How to find a new healthcare provider

When you’re looking for a new healthcare team, it can be helpful to:

• ask others with T1D for recommendations – try JDRF’s private Facebook group for people with T1D, which has members from all around Australia
• if you have any other healthcare providers you trust, ask them for recommendations that they work collaboratively with.
• shop around to find someone who is the right fit for you. Don’t be afraid to visit a few healthcare providers until you feel comfortable.
• read online reviews (but read critically and always take them with a grain of salt!).
• ask potential new healthcare providers about their experience in treating T1D specifically, their approach to collaborative care, how they approach the mental health aspects of living with T1D, and what resources they can provide for ongoing education and support.

Everyone deserves a healthcare team that shows respects, supports their efforts, and works collaboratively to help manage T1D effectively. If that’s not what you’ve got, you always have options. Don’t hesitate to seek new care if your current team isn’t meeting your needs.