Last reviewed: July 2026
If you have concerns about how your condition is being investigated or managed, it can sometimes feel difficult to make yourself heard. This may be especially challenging with a rare condition such as aspergillosis, where healthcare professionals outside specialist services may have limited experience of the disease.
Advocacy means helping your views, questions and wishes to be understood. You may be able to advocate for yourself, ask a trusted person to support you, or use an independent advocacy service.
Speaking up does not mean being confrontational. It means working with your healthcare team to understand your care, participate in decisions and raise concerns when something does not seem right.
Before an appointment
A little preparation can make it easier to explain what matters most to you.
- Write down your two or three most important questions.
- Make a brief timeline of new symptoms, treatment changes or important events.
- Bring an up-to-date medication list, including inhalers, steroids, supplements and non-prescription medicines.
- Record how the condition is affecting everyday life, not only individual symptoms.
- Decide what you hope will happen next—for example, a clearer explanation, a medication review or a follow-up plan.
- Ask whether a family member, friend or carer can attend with you.
You can say at the beginning of the appointment:
“I have three things I particularly need to understand today. Can we make sure we cover them before the appointment ends?”
Questions you are entitled to ask
You can ask your healthcare professional to explain:
- what diagnosis they think you have and how certain they are;
- what your test or scan results mean;
- what the available treatment options are;
- the expected benefits, risks and side effects of treatment;
- what monitoring will be needed;
- what alternatives are available;
- what might happen if you decide not to have a treatment;
- who to contact if symptoms or side effects worsen;
- when your condition and treatment will next be reviewed.
If an explanation is unclear, it is reasonable to ask for it to be repeated in plain language. Before leaving, try to confirm the plan:
“Can I check that I have understood? The next step is … and I should contact … if … happens.”
Contacting your clinical team between appointments
Your clinic letter or hospital correspondence may include contact details for the consultant’s secretary or specialist nursing team. When contacting them:
- include your full name, date of birth and NHS number if known;
- briefly explain the problem and when it began;
- state whether it is getting worse;
- say what response you need—for example, advice, an earlier review or clarification of the treatment plan;
- keep a record of when you contacted the service.
Email can be useful because it creates a written record, but it may not be monitored continuously. If the matter is urgent, follow the urgent-care instructions provided by your clinical team rather than relying on email.
If you are deaf, have hearing loss or find telephone communication difficult, ask the service to record your communication needs and offer an accessible way to contact you. You may also be able to use Relay UK, which replaced the former Next Generation Text Service.
Ask someone you trust to support you
A family member, friend or carer can:
- help you prepare questions;
- take notes during an appointment;
- remind you about points you wanted to raise;
- help explain how the condition affects you at home;
- support you emotionally;
- help follow up agreed actions afterwards.
Healthcare professionals will normally need your permission before discussing confidential information with another person. Tell the team clearly if you want somebody involved and ask how your consent should be recorded.
Your supporter should help communicate your wishes rather than make decisions for you unless they have the appropriate legal authority.
If you are worried that something has been missed
Explain your concern as specifically as possible. For example:
“My symptoms have become worse despite following the treatment plan. I am concerned that something may have changed. Could you explain what has been ruled out and whether I need further assessment?”
You can ask whether your case should be discussed with another clinician, reviewed by a multidisciplinary team or referred for specialist advice. You can also ask about a second opinion, although access and referral arrangements vary and there is not always an automatic right to one.
Do not wait for a routine complaints process if you develop severe or rapidly worsening symptoms. Use the urgent contact instructions provided by your healthcare team, NHS 111 or emergency services as appropriate.
Contacting PALS
If you cannot resolve a concern directly with the clinical team, contact the Patient Advice and Liaison Service at the hospital providing your care.
PALS can:
- help resolve concerns informally;
- explain how the hospital’s services work;
- help identify the right person or department to contact;
- provide information about the NHS complaints process;
- tell you where to find independent support.
PALS is part of the NHS organisation, so it is helpful for resolving problems but is not the same as an independent advocate.
What is an independent advocate?
An independent advocate can help you understand information, communicate your views and participate in decisions about your care. Depending on the service and your circumstances, an advocate may:
- help you prepare for meetings or assessments;
- help you write letters or make phone calls;
- attend meetings with you;
- help you understand different options;
- support you during a complaint.
An advocate does not make decisions for you, provide medical advice or tell you what choice to make.
In some circumstances, a local council must arrange advocacy for a person who has substantial difficulty understanding or participating in decisions and has nobody appropriate to support them. The NHS provides more information about finding someone to speak up for you.
Finding an advocate
Advocacy provision varies between areas. Possible starting points include:
- your local council’s adult social care service;
- the hospital’s PALS team;
- your local Healthwatch;
- an independent NHS complaints advocacy provider;
- disability or condition-specific organisations.
You can find your local Healthwatch and ask which organisation currently provides advocacy in your area.
Named advocacy providers change between areas and over time, so it is safer to check locally rather than assume that one national organisation covers your location.
If informal efforts do not resolve the problem
Keep a brief written record of:
- what happened;
- the dates of appointments and contacts;
- who you spoke to;
- what was agreed;
- what remains unresolved;
- what outcome you are seeking.
If direct discussion and PALS do not resolve the concern, you can use the NHS complaints process. In England, free NHS complaints advocacy may be available to help you prepare a complaint and attend meetings. NHS England provides information about feedback and complaints about NHS services.
If you reach the end of the NHS complaints process in England and remain dissatisfied, you may be able to ask the Parliamentary and Health Service Ombudsman to review the complaint.
Complaints and advocacy arrangements differ in Scotland, Wales and Northern Ireland, so use the health-service guidance for the country in which you receive care.
Being persistent without carrying the whole burden yourself
If an important question remains unanswered, follow up calmly and clearly. Refer to previous contacts, explain why the issue matters and state what response you need.
However, patients should not have to manage complex healthcare systems entirely alone. If repeated attempts are getting nowhere, involve PALS, your GP, an independent advocate or another appropriate service rather than feeling that you simply have to “push harder”.
A simple advocacy checklist
- What is my main concern?
- What evidence or examples can I provide?
- What do I need explained?
- What outcome am I asking for?
- Who is responsible for the next action?
- When should I expect a response?
- Who can support me if the problem remains unresolved?
Important: This information is primarily about NHS care in England. It provides general guidance and is not a substitute for individual medical or legal advice. Seek urgent medical help if symptoms are severe or rapidly worsening.
