Peer advocacy: helping each other speak up

What peer advocacy means

A peer is someone with relevant experiences in common with you. For example, another person with a learning disability may understand barriers you face when dealing with services. Peer advocacy uses that understanding to help you express your wishes and exercise your rights. It may involve trained paid workers or volunteers. Shared experience can help build trust, but does not mean everyone has the same needs, culture, opinions or choices.

Self-advocacy, group advocacy and other peer support

Self-advocacy means expressing your own views and standing up for your rights, with support if wanted. Group advocacy brings people together around shared concerns, such as inaccessible transport. Peer advocacy helps another person have their say. These activities can overlap. Befriending focuses on company and friendship. Peer support within a mental health service can focus on wellbeing and recovery. Neither automatically includes independent advocacy. Ask what the particular role covers and whether it is independent of the service involved.

Help with a meeting, letter or everyday decision

You might practise asking for more support, prepare questions about a care plan or work out what a confusing letter means. With your agreement, a peer advocate could attend a meeting, remind you of your questions or help explain your views. Afterwards, check what was agreed, who will act and by when. A useful starting point is one change you want: for example, choosing when you go out. Ask for specialist advice when the issue needs it.

Support that fits your communication

Explain how you communicate. Ask about pictures, communication devices, signing, an interpreter, breaks or a quiet room. Ask for understandable information and time to consider it. Your views matter without a confident speech. A group should make room for different communication methods, rather than letting its most confident speakers decide for everyone.

Your wishes and decisions remain yours

Agree what your peer advocate may do and who they may contact. Being your advocate does not give someone legal authority to consent to treatment, sign a contract or control your money. A learning disability does not automatically mean you cannot decide. Capacity concerns a particular decision at a particular time, after support to decide. If someone cannot instruct an advocate, seek suitably skilled advocacy that explores their communication, preferences and rights. Other people should not simply choose what they prefer.

Privacy, sharing information and keeping safe

Before sharing personal information, ask what is recorded, where it is kept and who can see it. Agree what may be shared and with whom. An advocate should explain confidentiality and its limits, including safeguarding concerns or a legal requirement to disclose. Group members should agree privacy rules, but a group cannot promise that every member will keep information private. You can discuss sensitive matters separately.

Clear boundaries and independence

Ask who supports the advocate and what happens if they know someone involved in your complaint. A conflict of interest means another relationship or interest could interfere with supporting you. The organisation should address this, sometimes by finding someone else. Advocacy should not pressure you into agreeing with staff or joining a campaign. Agree contact times and what help is outside the role. Do not share bank passwords or PINs, or lend money as part of an advocacy arrangement.

Keep your right to statutory advocacy

Statutory advocacy means advocacy provided because the law requires it. Care Act advocacy generally applies to relevant care and safeguarding processes when you have substantial difficulty being involved and no appropriate person to support you; exceptions also exist. Mental capacity, mental health and NHS complaints advocacy have different rules. Attending a peer group does not automatically meet those duties. Ask the council or NHS to consider the correct entitlement. A peer advocate could undertake a statutory role only if the legal and service requirements for that role are met.

Find learning-disability-led groups in England

Learning Disability England links to a searchable map of self-advocacy groups. People First also lists member organisations. Speakup explicitly describes self, group and peer advocacy. My Life My Choice is a user-led self-advocacy organisation in Oxfordshire. Sunderland People First supports self-advocates in the North East. These are examples of different organisations, not a promise of individual advocacy everywhere. Ask each group what it currently offers, who can join, the area covered and whether it supports your particular issue.

Questions before you start

Ask whether you can approach the group yourself, whether there is a waiting list and whether any fees or activity costs apply. Check travel, online access, support-worker arrangements and any expenses available. Ask who will help if your usual advocate is away. Agree what success would look like and when you will review progress. If you face a legal deadline or urgent care decision, tell the organisation immediately and seek the appropriate specialist help alongside peer support.

Becoming a peer advocate

You can ask a self-advocacy organisation about paid work, volunteering or supported ways to begin. Roles vary; joining a group is not automatically a job offer. Ask for an accessible role description and training in listening, rights, communication, confidentiality, safeguarding and boundaries. You should have someone experienced to discuss the work with, manageable hours, breaks and emotional support after difficult situations. Agree pay or expenses and access support before starting. If you receive benefits, check how a particular paid role could affect them.

Review the support or raise a concern

Check whether your views are being represented accurately. You can ask for a different approach, request another advocate or end the arrangement. Ask the organisation how to complain and how to get support with doing so. A quality mark is not a guarantee that nothing will go wrong. If there is abuse, pressure or a threat to your safety, use safeguarding or emergency help as appropriate; you do not have to wait for the advocacy complaint to finish.

Peer befriending in mental health hospitals

BILD’s Buddies Project offers peer befriending to people with learning disabilities and autistic people detained in mental health hospitals. Trained volunteers have their own experience of detention. This can provide a connection with someone who understands hospital life. It is a different role from independent advocacy and does not replace any right to a statutory advocate. Ask the ward or BILD whether the project is available through the service; the information page does not guarantee a place.

Helping each other speak up

What you can do next

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