User involvement and speaking up groups
At The Advocacy Project, we believe user voice should sit at the heart of decision-making. We work alongside people to make sure their views are shared in ways that feel safe, accessible and meaningful.
Whether you’re nervous about your first meeting or you’ve been involved before, there are tools and support available to help you share your views. It’s your experience that makes change happen.
A deeper dive
Click below to find out about more about how user voice drives the work we do
User council and speaking up groups - getting involved and sharing your voice
What being involved can look like
User involvement is about making sure people’s voices are heard and taken seriously in decisions about health, care and community life.
People who use services are experts in what works and what doesn’t. Their lived experience brings insight that can’t be learned from reports or policies alone. When people are supported to speak up, services are more inclusive, fairer, and better designed.
User involvement takes many forms. One day, you might:
- Sit alongside commissioners or decision-makers to talk about access to healthcare or support services
- Share your experiences to help improve how services are run
- Help shape information so it is clearer and easier to understand
- Take part in discussions about housing, transport, mental health or community spaces
You don’t need special qualifications, just your lived experience and a willingness to share what matters to you. We support people to take part at their own pace, in ways that work for them.
Why user voice matters
When people are involved:
- Decisions are grounded in real experience, not assumptions
- Services are more responsive and accessible
- People feel valued, confident and connected
- Change is more likely to last
Our role
We support people to:
- Understand what’s being discussed
- Prepare what they want to say
- Feel confident speaking in meetings or groups
- Know that their views will be listened to with respect
We aim to work with kindness and honesty, and to create spaces where people feel believed, valued and supported to speak up.
Watch this video to see how user voice helps make sure that our health and social care services are accessible to everyone, and not just the few.
Top tips for speaking up
Meeting with others is a great way to share your views and have your voice heard. This can be online or in person and may be with a few people you already know or a group you haven’t met before.
Going to a meeting to speak up can feel daunting, especially if it’s your first time. Many people feel nervous, unsure what to expect, or worried about saying the “wrong” thing. That’s normal. These tips can help you feel more prepared and confident and make the experience more enjoyable.
Preparing for a meeting, noting what matters most to you, thinking about questions you want to ask, and asking for the communication support you need can help you make your voice heard.
Before the meeting
- Think about what matters most to you. You don’t need to say everything – just the key points you want people to hear.
- Write things down, use notes, or bring prompts if that helps.
- Ask in advance about access needs, such as breaks, easy read information, extra time, or someone to support you.
- It’s okay to ask who will be there and what the meeting is about.
During the meeting
- You have a right to be listened to. Your experience matters.
- Take your time, it’s okay to pause, ask for something to be repeated, or say you don’t understand.
- If something feels unclear, you can ask: “Can you explain that another way?or “What does that mean for me?”
- You don’t have to agree with everyone, different views are okay and are often how great change happens.
Meeting “codes” – how we work together
These are simple ways to help meetings feel respectful and safe for everyone:
- One person speaks at a time
- We listen without interrupting
- We use clear language, not jargon
- We respect different opinions and experiences
- We give everyone a chance to speak
After the meeting
You can ask what will happen next and how decisions will be shared.
- It’s okay to follow up later if you think of something else you wanted to say.
- If the meeting didn’t feel right, you can talk to someone about it, including an advocate.
Speaking up takes courage. Whether you say one thing or many, your voice makes a difference.
Find out more:
This summary is based on our own experience as well as guidance from Mencap. You can read their full guide for more detailed tips and support.
Support and tips for giving feedback
Feedback isn’t just speaking in committees – it’s also raising concerns and being heard at different levels.
An NHS survey of autistic people, people with a learning disability, and their families and carers found that feedback and complaints often did not feel meaningful. Nearly three-quarters (72%) felt their complaint had not led to any change in how services worked, and a further 19% were not told whether anything had changed as a result.
Giving feedback, raising concerns or making a complaint:
Everyone has the right to give feedback about services they use, whether that feedback is positive, negative, or somewhere in between. Feedback helps services understand what’s working well and what needs to change.
You don’t need to be an expert or use formal language. What matters most is your experience.
Why feedback matters
Feedback and complaints:
- Help services learn and improve
- Let people know when something has gone wrong
- Highlight what services are doing well
- Can lead to changes that help other people too
- You should be able to speak up without fear of being ignored, blamed, or treated unfairly.
You can give feedback in different ways
People communicate in different ways. Feedback should be accepted in the way that works best for you, including:
- Talking to someone face to face or over the phone
- Writing an email or letter
- Using Easy Read, symbols, or pictures
- Using communication tools or supported communication
- With help from a trusted person, carer, or advocate.
You can ask for information and responses in a format you understand.
Saying something positive
Letting a service know when something has gone well is important too. Positive feedback:
- Recognises good practice
- Helps staff understand what makes a difference
- Can shape how services continue to work.
You don’t need to make this formal, a short message or conversation can be enough.
If you’re unhappy about something
If something doesn’t feel right, you have the right to raise it.
In most situations:
- Raising a concern should not affect your care or support
- You should be treated fairly and respectfully
- You should receive a response within a clear timeframe
- You can ask for help to understand what happens next
Many issues can be sorted out by talking things through early, but you can ask for the concern to be taken further if needed.
How complaints usually work
While processes vary, most complaints follow similar stages:
Stage 1: Informal or early resolution.
You raise the issue with the person or service involved. They should listen, look into what happened, and try to resolve it.
Stage 2: Formal review.
If the issue isn’t resolved, a manager or senior staff member looks at what happened and responds in writing (or another agreed format).
Stage 3: Independent or senior review
If you’re still unhappy, someone not directly involved reviews how the complaint was handled.
Stage 4: External or appeal stage
In some cases, you can take your complaint to an external body, such as a commissioner, ombudsman, or regulator.
You should be told:
- What will happen at each stage
- How long it is likely to take
- What changes (if any) will be made
Getting support to complain
Some people may need extra help to raise concerns or understand responses. You can ask for:
- An advocate
- An interpreter (including BSL or Makaton)
- Support with writing or communication
- Information explained again in a different way
Advocacy support can be especially important if you feel anxious, unsure, or not being listened to.
Time limits
Many complaints need to be raised within a certain time (often within 12 months of what happened, or when you first realised there was a problem). If you’re worried about time limits, it’s still worth asking for advice.
Confidentiality and respect
Information shared during feedback or complaints should be:
- Treated confidentially
- Handled in line with data protection rules
- Used only to look into the issue and improve services
You should always be treated with dignity and respect.
Finding out more
This guidance is general. Each organisation will have its own feedback and complaints process, which should be available in accessible formats.
You can:
- Ask the service directly for their complaints policy
- Look on their website
- Ask for help from an advocate or advice organisation
👉 You can also find information about our own feedback and complaints process, and how to get support, here.
Jargon busting - what does it mean
At The Advocacy Project, jargon busting means making sure information is clear, honest and easy to understand. Health, social care and legal language can often feel confusing or overwhelming, and we believe this should never be a barrier to people understanding their rights or making choices about their lives.
Our jargon busting work is led by people with lived experience, including members of our SYNERGY team, who help break down complicated words and explain what they really mean.
We do this through things like Easy Read information, straight-talking workshops, and clear explanations that put people first.
By challenging confusing language and promoting clear communication, we aim to make services more inclusive, respectful and accessible for everyone.
Hear directly from one of our SYNERGY members about jargon-busting, and why it’s so important: