Thinking About Supportive (Palliative) Care

Support for living well with chronic aspergillosis

If you’re living with chronic pulmonary aspergillosis (CPA), ABPA, or a long-term lung condition, you may have wondered what help is available when things become harder to manage. You may be feeling more tired, more breathless, or just unsure what the future holds.

One type of support that many people find helpful is palliative care – though a better word might be supportive care. This isn’t just about end of life. It’s about making sure you have the right support to feel as well as you can, for as long as you can. Try to seek it out earlier rather than leaving it to late. Many patient find that they get a big improvement in their quality of life, and that is important for the carer as well as the patient.

💬 What Is Supportive (Palliative) Care?
Supportive care means looking after all parts of your wellbeing — not just the illness.
It helps with:

• Controlling symptoms like breathlessness, pain, cough, or fatigue
• Improving your daily quality of life
• Support for anxiety, low mood, or fear
• Making plans for your future care and treatment
• Supporting your family or carers

You don’t need to stop treatment (like antifungal medicines or inhalers). In fact, many people receive supportive care alongside ongoing treatment.

✅ When Might It Help?
You might want to ask about this type of care if:

• You’re having more flare-ups or hospital stays
• Your energy or breathing is getting worse
• You’re finding treatment difficult to manage
• You want to talk about the future, or make plans
• You’re feeling overwhelmed, low, or unsure what to expect

It’s about being proactive, not giving up.

📄 Planning Ahead: Being in Control of Your Care
Planning ahead helps you stay in control and gives peace of mind to you and your family.

This might include:

• Saying where you would like to be cared for (home, hospital, hospice)
• Writing down what matters most to you
• Choosing someone to speak for you if you can’t (Lasting Power of Attorney)
• Deciding whether you want to be resuscitated if your heart stops (DNACPR form)

You don’t have to decide everything at once — and your choices can change over time.

🏡 Where Can Supportive Care Be Provided?
You don’t have to go to a hospice to get help. Supportive care can be arranged:

• At home – with help from nurses or a palliative care team
• In hospital, especially if symptoms become hard to manage
• In a hospice, which can also offer outpatient care or short stays
• Through phone or video calls with nurses or support services

Ask your GP, hospital team, or nurse about what’s available in your area.

💛 Why Talking Now Can Help

• Many people delay talking about supportive care — but starting the conversation early can help you feel more secure and more in control.
• You’re not giving up. You’re choosing the kind of care that respects your values and helps you live well.

“I wish I’d asked sooner. It wasn’t about dying — it was about living better.”

📞 What You Can Do Next
Talk to your GP, consultant, or nurse and ask:

• “Can I speak to someone about supportive care and planning ahead?”
• Ask about local palliative care services or advance care planning
• Let your family or carers know your thoughts and wishes
• Supportive online resources