Tips for self-advocacy

Read our top tips for self-advocacy, particularly when preparing for medical appointments or meetings.

 

Keep detailed and organised records 

Dedicating a filing cabinet or some boxes to securely storing and organising all your personal records and paperwork is a great help. It’s essential to keep your records organised in a way that’s easy to use and to keep up to date. Chronologically is often the easiest, but you could also have colour-coded dividers for different categories, e.g., health, benefits etc. Try to acquire your own copies of important/official documents like hospital discharge summaries, specialist consultation notes, psychologist reports, therapists’ recommendations, scans, etc. Keep copies of things you send by post or email and hold onto the correspondence you receive back. You may want to post any particularly important documents by tracked delivery so there’s a record of sending and receipt.

Build up a fuller picture of your health in your records by adding to the official documents you keep. You might include specifics about managing your condition (descriptions and timing of symptoms, medications etc.); a diary of medical appointments; you could include audio recordings, or photos, or videos to show specialists things that happen outside of your appointment in your daily life. If you have phone conversations, record the first and last names of individuals you speak to, along with their job title and a reference number for the call and the date and time it took place. 

Hospital passports help share your medical history and health needs quickly: they can make a real difference during emergency or planned care. Hospital passports provide essential personal and medical details, ensuring faster, more suitable treatment. Learn about hospital passports and how to fill them out on our hospital passport webpage. You can also download a blank hospital passport, in standard or #EasyRead format, to add your details.

Ideally, you should let a trusted person know where all your records are, how to access them, and how you have organised them, just in case you need help in future.

 

Get informed and keep building your knowledge 

Think of learning as ongoing, life-long process, and take any opportunity to learn more.  
At Shine, we have specialist information and resources on our website. You can also call or email for specialist information, advice and support.

Use the professionals involved in your life and care as information resources to learn from. Whether a neurosurgeon, SEND teaching assistant, or benefits assessor, try to learn from everyone. Ask them for recommendations for books, articles, leaflets, websites, videos or even other people to speak to. Make notes to help you learn: jot down questions, and highlight parts you want to know more about. You might want to review these notes with the professional who recommended the reading/viewing material. You are entitled to the time and attention of the people involved in making decisions that affect your life.

It might benefit you to learn about the professionals that you see regularly too: What is their role, experience and expertise? Who is in charge? Who can help you with what, when, and how?

 

Prepare for meetings and appointments

It can be helpful to set out and bring along an agenda to each meeting and appointment. A good agenda should cover what you want to tell the professional, what you want to ask them, and what you want to happen.

It’s often useful to have a clear idea of what you want to achieve in a meeting as it helps plan what to discuss and keeps you focussed. If relevant, ask the professional what their aims are for the meeting and beyond – short and long-term. Professionals are knowledgeable and motivated, and they usually work best with people who are also informed and invested. Think of yourself and the professional/s as a team working on a problem together rather than it being you versus the professional. 

If you’re nervous, it can help to practice: plan what you want to say and the points you need to make. You can write down as much as you need to help you remember everything that you want to share and ask. You can memorise these notes but it’s worth keeping them with you at the appointment in case you forget and to help keep you on track. To build your confidence you could even practice what you want to say with friends or in front of a mirror.

 

During a meeting – stay focused and organised 

Express and assert yourself calmly and firmly. Say exactly what you want or need and explain why. Don’t raise your voice or shout, but do speak clearly, concisely, and with confidence. 
Ask your pre-prepared questions and make note of the answers. Listen to what the other person is saying and ask for as much clarification as needed to get to grips with anything you don’t understand. Keep taking notes, highlighting any actions -  who is responsible for doing what and when, including what you are responsible for. At the end of the meeting, run through the action list so everyone is clear. For instance, you might say, “So now you are going refer me for an MRI, and I should receive the appointment by x date. In the meantime, I will take this medicine and record these symptoms, and I should come back to you if x, y, z happens”. Remember to thank the person for their time and assistance, it’s easy to forget, especially after a long appointment. 

In some instances, it might be appropriate to send a follow-up thank you note or email that summarises your understanding of the meeting and what will happen next. The thank you is polite, but the correspondence also acts as a reminder for any agreed actions and provides assurance that you both understand the meeting’s result.

The NHS website has some good tips about how to get the most out of a doctor’s appointment.

 

Negotiating: Balancing trust with assertiveness 

Professional expertise is important, but when a decision concerns you, your thoughts and opinions matter. Ask people to explain and try to keep an open mind about their answers while not forgetting what you want and need. Sometimes, you may need to negotiate and/or change your position regarding what is possible and when.

The balance between assertiveness and trust is hard but you can get better with practice. If speaking up for yourself is something you find difficult because you struggle with confidence, you might find it helpful to imagine what you might say or do on behalf of a friend in the same situation. It can help you find the words and strength to say what you need to. 

The Hydrocephalus Association has a useful factsheet about assertiveness that might be useful for anyone who finds this difficult. On YouTube there’s an excellent video about self-advocacy being a state of mind from a TED Talk by Abbey Edwards. 

One important thing that everyone would benefit from is accepting that we may be wrong on something; this is true of you but also of professionals. Sometimes, there are clear rights and wrongs; other times, it may be more subjective, or there may be a more complicated balance of benefits and trade-offs. Keep an open mind, but also remember that if you need to compromise on something that affects you, you’re entitled to know why.