My Voice Counts
Self-Advocacy Toolkit
One of FTWW’s main aims is to give those we support the confidence and skills they require to speak up about their health and related needs.
FTWW’s ‘My Voice Counts’ self-advocacy toolkit has been coproduced with our members. It aims to provide you with tips, advice, and skills that could be helpful in accessing the care and support that’s right for you.
How to use the Self-Advocacy Toolkit
This toolkit includes information about why self-advocacy is important as well a practical tips, techniques, and examples to build your self-advocacy skills.
It is available in Welsh and English.
Scroll down to read each of the five sections of the toolkit below, followed by some useful animations, scenarios, and our My Voice Counts checklist.
Self-Advocacy Toolkit - My Voice Counts
Download and print the full toolkit to read in your own time
Learn about self-advocacy and build your skills
Section 1: Why are women’s health concerns not always heard?
Section 2: What is self-advocacy and why is it important?
Section 3: 4 easy steps to getting started with self-advocacy
Section 4: 15 practical self-advocacy tips
Section 5: 13 techniques to help handle health conversations
“I don’t like to admit I’m struggling. I don’t want to be the person that’s labelled as sick. Even though I know it’s not the case, I feel like I’ll be seen as weak, or as someone who’s just not strong enough to deal with things. So when I do finally admit that there’s a problem, I can end up quite emotional and close to tears which I feel doesn’t help with being taken seriously, particularly by health professionals who don’t know me. “
Self-Advocacy in action: ‘My Voice Counts’ animations and scenarios
See self-advocacy in action by watching a less and more successful healthcare appointment, and reading examples of how to use the skills you’ve learned.
An example of a difficult healthcare conversation where the patient isn’t heard:
An improved healthcare conversation where the patient uses self-advocacy skills:
Self-advocacy in action
The four scenarios below may be useful for understanding how self-advocacy skills can help you respond in a healthcare conversation.
Scenario 1
You’re having side effects, but you feel that the doctor dismisses your experiences by saying that this treatment is the best one for your condition.
‘Thank you for outlining the benefit of this particular treatment, which I understand. However, I’ve noticed that since starting it I’m having what feels like constant period pain and spotting. It’s making it very difficult for me to manage and I’m having to take time off work as a result. I’d appreciate us looking at different options, please.’
Scenario 2
You’ve read that a referral to secondary care should be offered for your condition, but your doctor is reluctant to make one as the waiting list is so long and they are concerned about you managing whilst waiting.
‘Thank you, I appreciate you explaining the length of the waiting list. However, I’ve tried a couple of different treatment options now and I’m concerned that my symptoms are getting worse. I think it’s best for me if I go on the waiting list for secondary care at this point. I’ve checked NICE guidance and it confirms this as a next step. Thank you for making the referral for me. I’d also welcome some support whilst waiting, if you could suggest any services available in this area.’
Scenario 3
You are struggling to follow all the details of what you’re told during your healthcare appointment.
‘Thank you for explaining all the details about my condition and treatment options. However, I find it difficult to remember everything we discuss and need some more time to think about it all. Please could you write down today’s key points or give me a leaflet so I can get back to you with my decision. Would it be possible to make a second appointment in two weeks’ time? Thank you for this.’
Scenario 4
You feel that your doctor is more focused on your mental health and that your physical health needs are being blamed on this.
‘I agree that my mental health isn’t the best it could be. However, living with the physical symptoms that I have is stressful and impacting on lots of aspects of my life. I feel that if we could work together on managing the physical symptoms, my mental health would improve.’
(And, if you would like, you could also ask for a referral to counselling or mental health support for those wider psychological impacts caused by living with a chronic condition).
FTWW’s self-advocacy checklist
We’ve designed a simple checklist for better self-advocacy based on the phrase MY VOICE COUNTS.
Making time for
You
Voicing your symptoms, needs, and wishes
Ownership – it’s your health; you are in control!
Information – have your notes ready in advance
Calmly and confidently asking for clarification
Expressing your expectations
Collating your notes after the appointment
Observing how you’re feeling
Understanding what happened
Not dwelling on negative feelings about yourself
Taking care of you
Seeking additional support if needed
Request your FTWW ‘My Voice Counts’ freebie:
This will help you prepare and remember the checklist at your appointments. Available while stocks last!
The FTWW My Voice Counts self-advocacy toolkit has been developed with funding from the National Lottery, and the generosity of Sarah Seddon’s family and friends.
Our thanks also to FTWW’s members, and colleagues at Epilepsy Action for their contributions and insights.
English (UK) 
Cymraeg