If you have concerns with how your condition is being managed, or any questions about aspergillosis and its treatment, you may find yourself needing speak up on behalf of yourself. Most people will be able to do this for themselves, or with help from family and friends, but some may need an independent advocate to help them express their wishes and make informed decisions about their condition. Here are our tips for advocating for yourself, or finding an independent advocate.
Phone your consultant’s secretary or a specialist respiratory nurse from your team (emails sometimes get buried). Use Next Generation Text Service if you struggle with hearing.
Contact the Patient Advice and Liaison Service (PALS) team at your local hospital. PALS will be able to help you answer questions and resolve any concerns you have about your healthcare.
Get in touch with an advocate via your local council or a disability organisation such as seAp.
Keep pushing until you get what you need.
For more information, see the NHS advice on getting someone to speak up for you