1. You are an expert in your lived experience.
You know your body, your mental wellbeing, and what is normal for you. Keep this in mind at appointments so that you can confidently express when you need help with something, or when something is wrong.
2. Make a plan.
Go into healthcare appointments with an idea of what you want to get out of them. Doctors won’t always ask the right questions, so try to prepare to express what you need from them.
3. Write notes to bring to medical appointments.
Writing notes can help clarify what you want or need from an appointment. Not having to keep everything in your head can make appointments less stressful. You can also show these notes to the doctor or health practitioner if you are finding it hard to communicate in other ways.
4. Consider bringing someone you trust with you.
Important appointments can be a lot less daunting if you bring a friend, carer or advocate, who can help with emotional support, act as a witness to what is being said and intervene if necessary.
5. Ask for what you need.
It’s so important to be able to ask for what you need from a doctor. Try to figure out the way that you’re most comfortable expressing yourself, whether on your own or with the help of someone else.
6. Keep records of your care.
It can be useful to keep your own records so that you can track any referrals, appointments, changes in medication or dosages, and other treatments. This can also help you monitor what is and is not working for you.
7. See if you can change what isn’t working.
If you’re facing barriers to receiving care, it’s sometimes best to see if there is anything you can change. Perhaps seeing a different GP at your practice or changing GP surgery altogether might suit your access needs better. Services like PALS (Patient Advice and Liaison Services) can also help you make a complaint or advocate for you when things go wrong.
8. Join online or in-person support groups.
There are lots of peer support groups that can offer practical and emotional support. Knowing others who have faced similar challenges can be comforting, and hearing about others’ experiences can help too.
9. Charities can offer help.
There may be charities in your area or nationally who can help you access additional help and support with a variety of things, such as applying for specific benefits, free or low-cost therapies, advocacy, support groups and more.
10. Do your research.
Knowing your rights, relevant information about your illness, condition or disability, and what to expect from referrals can help you to feel empowered in appointments. You can also bring printouts or notes to show doctors.