Participation and Advocacy

Scope of this chapter

People have a right to participate in all the activities and relationships of life as independently as possible. This includes being involved in decisions about how their care and support is provided, rather than simply being a passive recipient of it.

Participation promotes individual wellbeing and increases choice, control, and independence. It also helps people to be aware of and assert their rights.

It is often described using the phrase “Nothing about me without me”.

As a service, we must always ensure that people are fully supported to participate in decisions about how their own care and support is provided. This includes being able to complain about something if they are not happy.

We should also facilitate wider opportunities for everyone that we support to provide feedback and contribute to overall service design and delivery.

This chapter explains some of the ways in which participation should be actively encouraged, the importance of advocacy when a person is unable to participate independently and what to do if a person makes a complaint.

Actively enabling and encouraging the participation of the people we support is a core principle and value. This means that it applies to everyone and is always relevant when planning for or providing care and support. 

Relevant Regulations

Related Chapters and Guidance

  1. A person is an expert on their own life;
  2. Do not assume a person does not want to participate, just because they do not ask to;
  3. Participation should never be a one-off event;
  4. Adapt communication and the environment to maximise participation;
  5. Provide different methods of participation;
  6. Take all suggestions and comments seriously;
  7. Welcome negative feedback as much as positive;
  8. Ask people what they think needs to change;
  9. Beware of power dynamics.

As a service, it is important that we support people to participate in activities and relationships.


This includes activities at home, such as reading and understanding post, writing a shopping list or cooking a meal. It also involves participation in the community.

There is a separate chapter of this Handbook dedicated to participation in community activity.

See: Accessing the Community


Relationships are important to us all. As a service, it is important that we support people to participate in the meaningful relationships that they want to have, in the way they want to have them.

There is a separate chapter of this Handbook dedicated to relationships:

See: Relationships and Identity

Being involved in how their care or support is provided is a key way in which we can encourage and enable the person to participate.

What support do you need?

How do you like to be supported with that?

Is there anything that would not work for you?

How will we know if you aren’t happy?

Example 1: Participation in care or support planning

Chang was diagnosed with dementia 2 years ago. Until now, he has been supported at home by his wife. However, his changing needs mean that she now needs some support.

Serena is the manager of the homecare agency that will be providing support for a few hours each day. Before starting the service, Serena meets with Chang and his wife over a cup of tea. This helps build rapport. Serena explains how the service works and what to expect. She then invites Chang to tell her how he would like to be supported, including the time of day that works best for him and the things he would like to continue to do for himself. She asks Chang whether he has any preferences about support workers - would he prefer a male?

She recognises that there may be things Chang thinks of later or that he changes his mind about and reassures him that his support worker will always check if he is still happy with how he is being supported and will be happy to make changes at any time.

Example 2: Participation in care or support planning

Beth lives in a small care home. She has been there for 2 years. Every morning, her support worker checks how she is and if she is ready to get up - she knows that Beth sometimes likes to have a lie in. When she is ready to get up, Beth is supported to have a shower if she wants one. She then has support to choose her outfit for the day. This can take some time as Beth likes to look at several options before deciding. Beth likes to wear make-up most days and for her hair to be straightened. Her support worker will ask Beth to show her which make up she wants to use. Whilst getting ready, Beth and her support worker will chat about any plans for the day. If there are no pre-arranged plans, Beth will be supported to decide what she wants to do. Sometimes Beth likes to watch a film but if her friends are free, she likes to meet up with them for lunch or a coffee. It all depends how she is feeling. Every month, Beth and her support worker spend some time reviewing her support plan to make sure that Beth is still happy with how she is being supported.

We should routinely ask people if they are happy with how their care and support is being provided to them, even if there do not appear to be any issues.

In most cases, if the person does request a change is made, their individual care or support plan should be automatically updated to reflect the change. This should then be communicated to the whole staff team, including managers and the registered person.

The only time when this would not automatically be the case is if the person requests a change that places them at increased risk of harm, abuse or neglect. In this instance the registered person should be informed, and a person-centred risk assessment completed.

There is a separate chapter of this Handbook that provides information and guidance about maximising a person's participation in risk assessment.

See: Risk Assessment (person-centred)

Participation should always be maximised at a review. This is just as important as participation during the initial care or support planning process.

In-service reviews

A review is an opportunity for us to find out if the care and support being provided to the person is working well or not. It is also a chance to identify any new goals and outcomes that the person wants to achieve, that can then be incorporated into their individual care or support plan. The service should carry out a review at least once a year, but also whenever there are signs that the care and support may not be working well. This includes at the request of the person.

Statutory reviews

If the service is funded by the local authority or the CCG, there will also need to be a statutory review at least once a year. It may be possible to co-ordinate service reviews with statutory reviews to reduce duplication for everyone involved. If a person finds it challenging to be part of a formal review process with a social worker and/or other professionals, their participation should be facilitated in another way.

For example:

  • The social worker/professional can meet with them separately to find out their views;
  • They can write down what they want to say, and this can then be read out;
  • They can take part via video-link or Microsoft Teams (if available);
  • They can speak to an advocate beforehand, who can share their views at any meeting.

The views of family and friends should be welcomed and seen as an extension of the person’s own participation. Often, family and friends may pick up on things that we have missed. For example, signs that something may be working or not working for the person. People also sometimes ask family and friends to raise issues or suggest an improvement on their behalf.

It is important that the service recognises the valuable contribution that people being supported can make to the wider service delivery.

Service delivery and design is simply the way in which we operate as a whole service.

Opportunities for people using the service to provide feedback about overall service delivery should be provided and welcomed.

This should include a range of methods, in line with communication needs and preferred methods of engagement of the people to be involved.

It could include, for example:

  • Group sessions;
  • One-to-one sessions;
  • Surveys and questionnaires - online or paper;
  • Seeking feedback on a particular topic e.g., décor, food, activities;
  • Consultation on potential changes;
  • Suggestions for future improvements.

Co-Production is not just about listening to what people using the service have to say. It is about treating the people using the service, staff, managers, and the registered person as equal partners, each valued as much as the other and able to actively participate in decisions about the service.

To find out more about co-production, see:

SCIE: Co-production in social care

Advocacy is vital if, despite making all reasonable adjustments, a person is unable to participate effectively on their own. This could be because they find it difficult to understand the information they need to know, or to communicate their views effectively.

Depending on the specific participation difficulties of the person, advocacy can have a range of functions.

  • Listen to what the person thinks;
  • Helping the person to say what they want/think, and what they don’t want;
  • Helping the person to understand information;
  • Explaining to the person what their options are;
  • Planning with the person what they want to do next;
  • Accompanying or representing the person at meetings;
  • Make sure others have due regard for the person’s needs and views.

Advocates must never:

  • Give the person their own opinion;
  • Solve problems or make decisions for the person;
  • Try to influence or sway the person one way or another;
  • Make judgements about the person;
  • Be influenced by anyone else;
  • Decline to share the person’s view for any reason.

If a person is likely to have difficulty participating, staff can advocate for them in the following ways:

  1. Speak to the person about what is going to happen;
  2. Ask them if they feel they need some help to participate;
  3. If they do, ask them if they would like a family member or friend to help;
  4. If not, ask them how they would like you to help them - normally from one of the following options:
    1. Helping the person to prepare for the meeting and think about what they want to say;
    2. Helping the person understand or complete a questionnaire/survey;
    3. Stopping the meeting at the right point to allow the person to speak;
    4. You talking to a meeting organiser about other options for them to participate.

Note:  Staff cannot attend any meeting on behalf of a person. This can only be a family member/friend acting as an advocate or an advocate acting in a professional capacity (see below).

Family and friends can act as an advocate, if the person wants them to do this and there is no conflict of interests that prevents them from doing so. For example, if a family member or friend disagrees with the view of the person, it would not normally be appropriate for them to act as they are unlikely to remain impartial.

A professional advocate is a paid advocate appointed under either the Care Act 2014, the Mental Health Act 1983 or the Mental Capacity Act 2005.

There are very specific circumstances when a professional advocate must be appointed by a public body:

Under the Care Act

If the person will have substantial difficulty participating in either of the following, and there is no appropriate family member to act:

  1. Any care and support process (assessment, review);
  2. Any safeguarding adults process.

Under the Mental Health Act 1983

If the person is:

  1. Detained under the Mental Health Act;
  2. Liable to be detained;
  3. Subject to a Community Treatment Order (CTO);
  4. Subject to a Guardianship;
  5. A conditionally discharged patient.

Under the Mental Capacity Act 2005

If the person lacks mental capacity and:

  1. A decision needs to be made about serious medical treatment; or
  2. A decision needs to be made about accommodation; or
  3. Under DoLS, when there is no suitable family member to act.

Sometimes, the local authority or CCG will support a person to access support from a professional advocate outside of those circumstances, particularly if they have ongoing difficulties participating in most aspects of their lives.

Whenever there is a professional advocate appointed, they should be involved in whichever capacity that they have been appointed.

One of the potential consequences of participation is that a person being supported, or a family member/friend may provide feedback that is negative or even decide to make a formal complaint.

Nobody must ever experience any form of retribution or disadvantage because of providing negative feedback or making a complaint.

All feedback, whether positive or negative, should be welcomed and considered when reviewing how things are done.

Feedback should be reported to the registered person, so that appropriate action can be taken. This could involve reviewing an element of the service (if negative) or celebrating good practice (if positive).

People should be told how their feedback has been incorporated and any action taken to address issues raised.

All complaints, anonymous or otherwise must be passed to a manager or the registered person as soon as possible after they have been made.

If identifiable, the complainant should be provided with written information setting out the services process for handling a complaint and be assured that the complaint will be investigated.

Information about the complaint, and the person/family member that has made it must not be shared with other staff members, as this could compromise the investigation.

If the nature of the complaint is abuse or neglect, a safeguarding concern must also be raised.

See: Disclosure and Raising a Concern

Note: The following guidance applies when the complaint has not resulted in a safeguarding concern being raised. If a safeguarding concern has been raised, the registered person should wait for advice and guidance from the local authority before contacting the complainant and investigating the complaint.

Communicating with the complainant

If identifiable, the complainant should be contacted at the earliest opportunity by the investigating manager, to explain the process of investigation and the likely timeframe in which it will be concluded.

Any subsequent changes to the process or timeframe must be communicated in a timely way.

The investigation aims

The investigation should seek to establish:

  1. The reason that the complaint has been made;
  2. Whether anything could have been done to prevent the complaint being made;
  3. What can be done in the future to prevent further complaints of this nature.

Once the investigation concludes

Once the investigation is concluded, the investigating manager should contact the complainant to explain the outcome and any actions or changes that are to be implemented. These should be put into practice as soon as possible.

If the complainant is not happy with the findings of the investigation, the process and findings should be reviewed by another manager or the registered person.

If the complainant remains dissatisfied, they should be directed to the Care Quality Commission website, for advice about other actions they can take.

See: Complain about an adult social care service

If an external organisation subsequently becomes involved, the service and the registered person should co-operate with any independent complaints investigation process.

Recording complaints

A record must be kept of all complaints made and the outcome of investigations. The confidentiality of complainants and others must be respected.

Monitoring complaints

The registered person should monitor the number and nature of complaints made over time, so that any patterns and areas of risk can be identified.

Notifying the CQC and others

There is no requirement to notify the CQC of complaints. However, if the CQC requests to see a complaint record, this must be provided to them within 28 days of asking.

The terms of any contract between the service and a commissioning organisation, will set out any requirement to notify a commissioner of a complaint.

Depending on the circumstances of the complaint, the Duty of Candour process may apply.

See: Duty of Candour

Learning involves reflecting on what happened, why, and what we can do differently so that it doesn’t happen again. If we do not learn, we will be unlikely to do things differently next time.

There is a chapter of this Handbook dedicated to learning:

See: Learning from Safeguarding Enquiries, Safety Incidents and Complaints 

Last Updated: March 21, 2022