When you live with a long-term condition like aspergillosis, ABPA, CPA, or severe asthma, you may face tough decisions about medication, side effects, and quality of life. Treatments like biologics can offer huge benefits—but they also carry risks, and no one knows your body, lifestyle, or priorities better than you do.
The NHS is clear in its long-term plan: you should be involved in every major decision about your care. This is known as shared decision-making (SDM), and it means clinicians and patients working together to make the best choices—not just being told what to do.
Here’s how you can become more confident in taking part in your own care—and how to help your clinical team include you.
🪜 Step-by-Step: How to Join the Decision-Making Process
✅ 1. Know You Have a Right to Be Involved
You are not being “difficult” by asking questions or wanting to be part of the decision. The NHS encourages shared decision-making—and it’s your health.
🗣 “I’d like to understand the options and be involved in deciding what’s best for me.”
✅ 2. Ask for the Options – Including None
Sometimes we are only offered one treatment, but most decisions have at least 2 or 3 choices. For example:
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Start or delay biologics?
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Try antifungals again or monitor symptoms?
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Continue with current care or make a change?
Ask:
🗣 “What are my options, including the option of not doing anything right now?”
✅ 3. Talk About What Matters Most to You
Doctors often focus on test results or scan findings. But you may be more concerned about fatigue, side effects, work, travel, or caring for family.
Let them know what your priorities are:
🗣 “My top goal is to stay out of hospital and manage breathlessness so I can keep working.”
🗣 “I can live with minor side effects, but I don’t want something that weakens my immune system too much.”
✅ 4. Understand the Risks and Benefits
Every treatment, including biologics, is a balance—they reduce inflammation but may make you more vulnerable to infection. That doesn’t mean you shouldn’t take them, but it’s important to understand the trade-offs.
Ask:
🗣 “What are the likely benefits of this treatment for someone like me? What are the possible side effects?”
🗣 “How will this affect my overall health and day-to-day life?”
✅ 5. Ask for Time to Reflect
You don’t need to make big decisions in a 10-minute appointment.
🗣 “Can I take this information home and think about it? I’d like to talk with family or other patients before I decide.”
It’s okay to not decide straight away.
✅ 6. Keep Track of Questions and Progress
Write things down before your appointment. You can even bring someone with you, or ask to record the discussion on your phone.
Apps and treatment diaries help you track side effects, symptoms, and goals, so you and your team can review how well things are working later.
✅ 7. Use Supportive Tools and People
Ask for:
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Leaflets, videos, or trusted websites to read later
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A follow-up call with a specialist nurse
You could say:
🗣 “Can you recommend a trusted place to read more about this? I’d like to understand it in my own time.”
🧠 A Shift in Thinking: It’s Not About a Quick Fix
We’ve all grown up with advertising that tells us “This treatment will fix the problem.” But in reality, every treatment is a trade-off—between the benefits it brings and the side effects or limitations it may cause.
Even doctors can fall into the trap of focusing only on what they can treat in their specialty—lungs, infections, skin—and miss how treatments affect the whole person.
You can help by:
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Gently reminding them of the bigger picture
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Asking them to explain in plain language
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Saying honestly how things are affecting your life, not just your lungs
🌈 Your Quality of Life Is the Priority
In the end, what matters is how you feel and function. For some, a small side effect might be worth the gain in lung function or fewer flare-ups. For others, it may not. Only you can make that call—with the right information and support.
📌 Good care means making decisions with you, not for you.
📥 Want to Take This Further?
Ask your clinic or GP about:
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Shared Decision-Making tools (they’re part of NICE guidelines)
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Getting written summaries of discussions and next steps
And remember: you’re not just a patient—you’re a partner in your care.
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