Guidance

Recommendations

Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

The recommendations in this guideline apply to both instructed and non-instructed advocacy. When providing non-instructed advocacy, advocates will need to take additional steps to determine as far as possible what the person's wishes, feelings and desired outcomes are likely to be, to best represent the person.

If the person lacks the capacity to instruct an advocate, advocates will need to act based on the person's likely wishes, feelings and desired outcomes.

1.2 Who else may benefit from advocacy

1.2.1 Offer advocacy to people who are not covered by the legal entitlement but who would otherwise not be able to express their views or sufficiently influence decisions that are likely to have a substantial impact on their wellbeing or the wellbeing of someone they have caring or parental responsibility for.

For a short explanation of why the committee made this recommendation and how it might affect practice or services, see the rationale and impact section on who else may benefit from advocacy.

Full details of the evidence and the committee's discussion are in evidence review B: who else would benefit from advocacy and how do we identify them?

1.3 Information about effective advocacy and signposting to services

1.3.1 Local authorities must meet the requirement of the Care Act 2014 to make information and advice publicly available about care and support services for adults in their area. This should include advocacy services.

1.3.2 Local authorities, health authorities, NHS trusts, health and social care providers and advocacy services should provide everyone legally entitled to advocacy (including young people who are using adult services) with information about their entitlement to advocacy and what this means. There should be proactive signposting to the information using accessible formats.

1.3.3 Local authorities, health authorities, NHS trusts, health and social care providers and advocacy services should provide everyone who would benefit from advocacy (whether or not they are legally entitled to it) with information about:

  • what advocacy services are available to them

  • how an advocate could help them

  • how to access and contact advocacy services.

1.3.4 Local authorities, health authorities, NHS trusts, health and social care providers and advocacy services should ensure that all information about advocacy is provided in a variety of ways to suit people's needs (including for family, friends and carers), using accessible formats where relevant. Examples include using interpreters, sign language and versions such as Easy Read, large print, braille and audio. For more guidance on communicating and providing information, see the NICE guideline on patient experience in adult NHS services and the NHS Accessible Information Standard.

1.3.5 Local authorities, health authorities, NHS trusts, health and social care providers and advocacy services should repeat information about advocacy and how to access it at each key point in the person's interaction with health and social care.

1.3.6 If a person is offered healthcare, care or support out of their home area, the organisation arranging the placement should give them (and their family, friends or carers, as appropriate) information about the advocacy support available and help them to access it.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on information about effective advocacy and signposting to services.

Full details of the evidence and the committee's discussion are in:

1.4 Improving access to advocacy

This section should be read alongside the section on training and skills for health and social care practitioners who work with advocates.

1.4.1 Health and social care providers should ensure that advocates can meet people in person to support them to make initial contact with advocacy services.

1.4.2 Health and social care providers in all settings, including hospitals, care homes and prisons, should ensure that policies and procedures do not act as an obstacle to people accessing advocacy. This includes finding alternative methods to mitigate any risks, for example from infection.

1.4.3 If a person has been detained under the Mental Health Act 1983 and has legal representation, they still have a legal right to advocacy and therefore mental health services must continue to facilitate access to independent mental health advocacy (IMHA) support. See the section on legal right to advocacy.

1.4.4 Commissioners and advocacy providers should make it easy for people to access advocacy by having:

  • flexible ways to make contact, including by self-referral

  • a simple process that directs people to the right advocacy support without them needing to know what type of advocacy they need (for example, a universal point of access).

1.4.5 Advocacy providers should aim to support continuity by offering people the same advocate for different types of advocacy (for example, statutory advocacy in line with the Care Act 2014, IMHA, independent mental capacity advocate [IMCA] and non-statutory advocacy). If this is not possible, they should ensure that systems for handover are in place that are not reliant on a new referral.

1.4.6 Independent mental health advocates should make regular visits to inpatient settings to identify people who would benefit from advocacy and help them to access it. This includes taking all necessary steps to ensure that people who would otherwise be unable to instruct an advocate, or who would find it particularly difficult, do not miss out on statutory advocacy services. Particular efforts should also be made to facilitate access to advocacy for people in isolation, seclusion or segregation.

1.4.7 Advocacy providers, hospital and health trusts and commissioners should offer IMHA on an opt-out basis so that everyone who is eligible meets an advocate and is offered the service.

1.4.8 Advocacy organisations should ensure that IMHA is offered at the earliest opportunity and then regularly afterwards to people who are eligible. This includes people who have initially declined support. For these people, advocacy organisations should explore, where appropriate, the reasons why the support was declined and what could be done to help them access advocacy.

1.4.9 IMHA services should raise awareness of disabled people's organisations and user-led organisations, self-advocacy groups or patient participation forums and promote peer advocacy and self-advocacy options.

1.4.10 Advocacy organisations should have a plan for how to ensure that their services are taken up by the people with the greatest need, who may not be able to ask for them.

1.4.11 Local authorities and advocacy providers should collaborate to make it clear how people can access advocacy and how they can provide support to help them to do so if they:

  • are supported outside of their home area or

  • are carers who care for someone outside their area.

1.4.12 Health and social care practitioners should ensure that people who are unable to ask for an advocate get advocacy when they are entitled to it.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on improving access to advocacy.

Full details of the evidence and the committee's discussion are in:

1.5 Enabling and supporting effective advocacy

1.5.1 Health and social care practitioners and other referrers should:

  • identify the need for advocacy as early as possible and

  • make a referral to an advocacy service without delay.

1.5.2 When the need for advocacy is identified, allow enough time:

  • to appoint an advocate if the person does not have one

  • to make any other arrangements, for example if the person needs an interpreter

  • for the advocate to help the person prepare before any meetings or discussions, and to ensure they understand the outcome afterwards.

1.5.3 Service providers should accommodate the availability of the advocate when planning and scheduling meetings, ward rounds or other situations where decisions are being made, including rearranging meetings where needed and practicable.

1.5.4 If people have not had enough time to prepare with their advocate before a meeting, their advocate should support them in requesting to rearrange the meeting.

1.5.5 Advocacy organisations should ensure that there is adequate time for the advocate and person to build relationships and trust according to their individual needs.

1.5.6 Service providers should ensure that people can have discussions with their advocates in a private area where they can talk in confidence without being overheard.

1.5.7 Health and social care practitioners should involve a person's advocate in all discussions with the person until a decision has been made and explained to the person, and they have had a chance to challenge the decision if they want to.

1.5.8 Health and social care practitioners should facilitate advocacy, for example by:

  • respecting the advocate's independence

  • sharing information appropriately with advocates

  • supporting the person and building good working relationships with them

  • encouraging and supporting ongoing contact between the person and their advocate

  • giving the person privacy to talk to their advocate

  • supporting people to understand about advocacy and to ask for the advocacy that they would want, or ask for it on their behalf if appropriate

  • responding to advocates in a timely manner

  • supporting any communication needs, such as arranging for an interpreter.

1.5.9 Health and social care providers should offer practical support to help people to communicate with their advocate remotely. This may include providing:

  • access to computers, the internet and phones

  • support to use technology

  • help to schedule and remember meeting times.

1.5.10 Advocacy providers should use digital platforms to communicate with the person when necessary or the person prefers it, and only when it is safe, effective and appropriate to do so.

1.5.11 Health and social care practitioners responsible for decisions should ensure that all formal and informal concerns that are raised, by either the person or the advocate on their behalf, are understood, responded to and recorded.

1.5.12 Health and social care providers should periodically audit cases to assess whether referrals have been made to advocacy services in line with statutory duties.

1.5.13 If gaps in compliance (for example, people not being informed of their right to an advocate) are identified by audits, or otherwise, health and social care providers should develop action plans to improve compliance.

1.5.14 Local authorities and health and social care providers should consider including the numbers of referrals they make to advocacy services as a part of their corporate performance information.

1.5.15 Advocacy services should ensure that advocacy staff know when and how to report and act on safeguarding concerns.

1.5.16 Advocacy services should ensure that their advocacy staff are delivering effective safeguarding by:

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on enabling and supporting effective advocacy.

Full details of the evidence and the committee's discussion are in:

1.6 Effective advocacy

1.6.1 Advocacy providers should ensure that their advocacy service is accessible, for example by:

  • making face-to-face advocacy available unless this is not possible

  • using remote advocacy if the person prefers this and it is effective

  • operating outside normal working hours if possible as well as during them

  • making referral processes simple, flexible and clear

  • making referral forms easily available online

  • ensuring that meeting places are accessible in all aspects

  • clearly describing available services

  • producing policies, procedures and publicity materials in accessible formats, including Easy Read

  • meeting people's communication needs

  • providing advocacy free of charge for people who are eligible

  • making efforts (directly and indirectly through other organisations) to reach under-represented and underserved communities

  • providing non-instructed advocacy.

1.6.2 Advocacy providers should ensure that their advocacy service is person centred, for example by:

  • ensuring that advocates are directed by the wishes and interests of the person they are advocating for

  • being non-judgemental and respectful of the person's needs, views, values, culture and experiences

  • avoiding and challenging stereotyping

  • supporting and helping the person to self-advocate as much as possible

  • supporting the person to choose their own level of involvement and the way they and their advocate work together to progress matters

  • enabling the person to lead and be involved in addressing the advocacy issue or decision-making processes

  • clearly agreeing with the person their advocacy needs, their impact and desired outcomes

  • only consulting, meeting or accepting information and documentation from third parties with the consent of the person, or if the person is unable to consent and it is in their best interests

  • offering a choice of advocate (for example, gender and culture) for people seeking support.

1.6.3 Advocates should work with the person they are supporting to develop a shared understanding of what the person wants to achieve. They should discuss and agree with the person whether they have achieved the outcome they wanted and what to do if this does not happen, and review regularly.

1.6.4 When people lack capacity to instruct their advocate, advocacy providers should ensure that the advocacy remains person led and involves people with an interest in the person's welfare.

1.6.5 Advocacy providers should include people with lived experience of health inequalities or using health and social care or advocacy services in their organisation, for example, as paid advocates or as part of management committees or boards.

1.6.6 Advocacy providers must promote equality throughout their services for everyone with protected characteristics under the Equality Act 2010.

1.6.7 Advocacy providers should deliver effective advocacy in relation to safeguarding by supporting their advocates to:

  • be sensitive and alert to what the person is telling them and to observe the person's communications and circumstances to identify any safeguarding concerns

  • respond to concerns about poor practice that fall below the threshold for safeguarding

  • challenge decisions if safeguarding concerns have been raised but the local authority has decided they do not meet the threshold for action

  • continue to advocate for a person throughout any safeguarding processes

  • take action if they observe other safeguarding issues while they are advocating for a person

  • provide non-instructed advocacy.

1.6.8 Advocacy providers should ensure that the same advocate works with a person throughout the advocacy process, if possible and the person prefers it.

1.6.9 Advocacy providers should maintain independence from any other organisations the person is in contact with, to avoid any conflict of interest. Ways to do this include:

  • establishing themselves as a free-standing organisation with governance documents that promote and protect their independence

  • ensuring that their independence is clearly reflected in all publicity material, including on their website

  • ensuring that their service is structurally independent of any other services offered

  • developing an organisational culture that encourages advocates to challenge freely and as directed by the people they are working with

  • having a conflict of interests policy, keeping a register of conflicts that might influence board members, staff and volunteers, and ensuring that advocates are free from any conflicts of interest

  • actively seeking funding from more than 1 source

  • ensuring that funders, commissioners and external health and social care practitioners are not involved in organisational decisions such as how or by whom advocacy is delivered

  • putting in place engagement protocols that govern the organisation's interaction with other organisations.

1.6.10 Advocacy providers should, wherever possible, have advocates specialising in different types of advocacy and multi-skilled advocates who can provide different types of advocacy to the same person.

1.6.11 Advocacy services should ensure that they can provide access to interpretation and translation services when the person needs them.

1.6.12 Advocacy services should ensure that advocacy is culturally appropriate by respecting and taking into account the person's cultural needs, preferences, customs or religious beliefs and experience of health inequalities.

1.6.13 Advocacy services should support their staff to develop cultural competence to meet the needs of the populations in their local areas, for example by training, supervision and reflective practice.

1.6.14 Advocates should maintain confidentiality, and explain the principles and the limitations of confidentiality in advance to people they are supporting. This should include:

  • what information will be shared, who with, and when and

  • when confidentiality may need to be breached, for example, to make a child or adult safeguarding alert or when required by law.

1.6.15 Advocacy providers should work together to promote best practice and consistency. This could be done, for example, by sharing learning, insight and tools, and developing joint publications, guidance and resources.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on effective advocacy.

Full details of the evidence and the committee's discussion are in evidence review F: what does effective advocacy look like?

1.7 Partnership working and relationships with families, friends and carers, commissioners and providers

1.7.1 Advocates should liaise with family members, friends and carers when the person wants them to or when the person cannot express a view about this but it is in their best interests. This includes, for example, and where appropriate:

  • seeking information from family members, friends and carers to help understand the person's circumstances, communication preferences, views and wishes

  • sharing information with family members, friends and carers about the work that they are doing on the person's behalf.

1.7.2 Advocacy providers should be familiar with local support services, such as health, social care, education, employment support and community action, and what these services offer so that they can give up-to-date and accurate information to people accessing advocacy.

1.7.3 Safeguarding Adults Boards should ensure that they have input from advocacy providers, for example by having them as board members and giving them the opportunity to give feedback about services.

1.7.4 Commissioners should support advocacy providers to ensure that information is available to people who may use advocacy services, for example ensuring there is enough time in contracts to develop and provide the information in accessible formats.

1.7.5 Advocacy providers should work with commissioners and service providers to develop protocols that facilitate effective advocacy (for example, referrals, engagement and dispute resolution).

1.7.6 Commissioners of advocacy services should work with other local commissioners and commissioning bodies, and those in other geographical areas, to:

  • identify and address any current gaps in services

  • develop a long-term view of what advocacy services are needed and plan how to achieve this.

1.7.7 Practitioners should share relevant elements of individual risk assessments and safety plans with advocates to ensure their safety, and the safety of the people they support.

1.7.8 Health and social care providers and advocacy providers should ensure that their staff understand when and how advocates can access a person's records, in line with legislation.

1.7.9 Commissioners of IMHA services should work in partnership with commissioners of mental health services to understand and maximise the impact of IMHA provision on mental health service development.

1.7.10 Advocacy providers and commissioners should work in partnership with other organisations to ensure culturally appropriate advocacy that meets local needs. For example, by:

  • providing advocacy as an integral part of wider Black community and voluntary sector mental health service

  • working closely with a south Asian community group to share insights and improve access to advocacy

  • providing mental health advocacy as a discrete casework advocacy service managed by a Black community and voluntary sector service

  • increasing the diversity of staff within advocacy services to reflect the local population

  • co-locating different types of advocacy services, for example, an African and Caribbean advocacy service located in the same community centre as a mental health advocacy service.

1.7.11 Advocacy providers should liaise with and facilitate the regulator in carrying out their role, including in inspecting regulated services.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on partnership working and relationships with families, friends and carers, commissioners and providers.

Full details of the evidence and the committee's discussion are in evidence review G: partnership working and relationships with families and carers, commissioners and providers.

1.8 Planning and commissioning services for advocacy

1.8.1 Commission advocacy services based on an assessment of local need, building on the Joint Strategic Needs Assessment and taking into account the effects of structural, systemic and health inequalities on the population, in co-production with people who use health and social care services.

1.8.2 Commissioning bodies in a locality should work together to agree and publish a long-term plan for advocacy based on the assessment of need. Commissioners should take into account the broad range of advocacy needs when planning and commissioning advocacy. This includes the need for statutory and non-statutory advocacy, peer advocacy and self-advocacy.

1.8.3 Consider commissioning advocacy services that can also be used by people who do not meet the criteria for statutory advocacy but could benefit from using them (see the section on who else may benefit from advocacy).

1.8.4 Consider taking into account wider public policies, strategy, legislation and guidance to inform advocacy commissioning decisions.

1.8.5 Local authorities and commissioners should engage with health and social care service providers and community stakeholders to help them understand and address gaps in advocacy provision, including their duty to develop the market under the Care Act 2014.

1.8.6 Commissioners and local authorities should involve people who use advocacy services in planning and designing advocacy services, including in monitoring contracts. For more guidance on involving people who use services, see the NICE guideline on community engagement.

1.8.7 Commissioners must ensure that sufficient advocacy services are available to meet statutory duties for people who are detained or deprived of their liberty in independent hospitals.

1.8.8 Commissioners should ensure that contracts support advocacy providers to maintain their independence and operate in line with advocacy principles, for example by avoiding caps on the number of hours an advocate can spend supporting someone.

1.8.9 When drafting contracts and specifications for advocacy services, commissioners should take account of the overall resources needed, so that providers have enough time and funding for advocates to undertake continuing professional development and training.

1.8.10 Consider the benefits of advocacy providers having an external quality accreditation, such as the Quality Performance Mark.

1.8.11 Commissioners should ensure that service specifications, service costs and contracts with advocacy service providers specify that the service should be person centred and based on the relationship between the person and their advocate. For example, specify that advocacy services:

  • allow the person to receive advocacy on issues that have a major impact on their health and social care needs

  • ensure adequate and long-term support for people in situations that place them at high risk (for example, risk of exclusion or abuse).

1.8.12 When planning and providing support, commissioners and advocacy providers should consider whether reasonable adjustments can be made to protect against or help the person deal with discrimination or inequalities arising from a person's protected characteristics as defined by the Equality Act 2010, or from other life circumstances and experiences such as health inequalities (see box 2).

Box 2 Characteristics, life circumstances or life experiences relating to inequalities

Protected characteristics of the Equality Act 2010

  • age

  • disability

  • gender reassignment

  • marriage and civil partnership

  • pregnancy and maternity

  • race

  • religion or belief

  • sex

  • sexual orientation.

Examples of life circumstances and experiences that could lead to discrimination or inequalities

  • transitioning from children's to adult care services

  • communication impairment

  • learning difficulties

  • learning disability

  • poor literacy

  • refugee status

  • English not being a first language

  • being an offender

  • homelessness

  • being from a Gypsy, Roma or Traveller community

  • coercive control

  • health inequalities.

Note: Some people could have multiple protected characteristics or life circumstances and experiences listed here and intersectionality may occur.

1.8.13 Commissioners and advocacy providers should consider working with local organisations that have the skills, knowledge and networks to help promote access to advocacy for underserved groups (for example, people with refugee status and people from Gypsy, Roma and Traveller communities).

1.8.14 When commissioning advocacy services, consider commissioning flexibility in services and a range of services so that:

  • providers can have multidisciplinary advocates or specific ones, depending on the needs of clients

  • services tailored to the local population are made available, for example, peer advocacy, family advocacy, group advocacy, statutory advocacy and non-statutory advocacy.

1.8.15 Commissioners should ensure that the role of advocates in safeguarding is included in specifications when commissioning, developing policy and practice, and by promoting the value of advocacy in safeguarding people.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on planning and commissioning services for advocacy.

Full details of the evidence and the committee's discussion are in:

1.9 Training, skills and support for advocates

1.9.1 Commissioners and advocacy providers should work with public bodies and providers to increase investment in training for advocates so that they are trained and competent to support people from a variety of backgrounds and with a variety of needs.

1.9.2 Advocacy providers should ensure that training, skills development and support for advocates covers the health, social care, housing, welfare and justice processes that are relevant to their role, so they can support people to navigate these services. These could include:

  • NHS continuing healthcare and other health-funded support

  • adult social care

  • personal budgets, personal health budgets and integrated personal budgets

  • personal independence payments

  • mental health services

  • section 117 aftercare under the Mental Health Act 1983

  • safeguarding procedures.

1.9.3 Advocacy services should provide training, skills development and support including induction, to their advocacy staff. Training could include:

  • core advocacy principles, for example those laid out in the Advocacy Charter

  • anti-oppressive practice and culturally appropriate advocacy training

  • communication, including specialised communication skills, for example communicating with people with a learning disability

  • identifying abuse or neglect

  • understanding human rights and how to promote them

  • health inequalities

  • making information available to people about how to make complaints, for example about health and social care services or local authorities

  • social skills, for example being approachable and building rapport

  • perseverance and tenacity

  • time management

  • managing expectations

  • confidence to challenge decisions

  • consistency

  • maintaining General Data Protection Regulation (GDPR) compliance, report writing and record keeping

  • understanding structural inequalities and intersectionality

  • equity, diversity and inclusion.

1.9.4 Advocates should complete the National Qualification in Independent Advocacy.

1.9.5 Advocacy organisations should ensure arrangements are in place for the regular support and supervision of all advocates.

1.9.6 Training for advocacy staff should include when and how to use non-instructed advocacy.

1.9.7 Consider giving advocates who deliver non-instructed advocacy increased access to support, supervision and reflective practice to ensure their advocacy remains person led, independent and outcome focused.

1.9.8 Advocacy services should ensure any volunteer advocates are trained and given adequate support and supervision.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on training, skills and support for advocates.

Full details of the evidence and the committee's discussion are in:

1.10 Training and skills for health and social care practitioners who work with advocates

1.10.1 Providers and commissioners should ensure that information about advocacy is included in training for all health and social care practitioners at induction, with refresher training every 2 to 3 years or as needed, so that they understand:

  • what advocacy is

  • who is entitled to advocacy support under current legislation

  • what advocacy support services are available locally in addition to those required by law

  • when and how to request advocacy

  • how to facilitate advocacy

  • the role of the advocate in different settings and situations.

1.10.2 Providers and commissioners should ensure that staff who may be the first point of contact for people using health and social care services that regularly work with advocacy services (for example receptionists) understand:

  • who is entitled to advocacy support under current legislation

  • what additional advocacy is available locally

  • when and how to request advocacy.

1.10.3 Providers and commissioners should ensure that staff in organisations working with advocacy services (including social workers, members of Safeguarding Adults Board members and commissioners of advocacy) have training in the role and function of advocates. This includes understanding that advocates:

  • help people to get the support they need from services, for example by offering to attend meetings, writing letters and emails, and making phone calls

  • support the person to make decisions, for example by providing information about available support services, making sure people understand their options and exploring the potential outcomes of the possible options

  • represent only the views of the person they are supporting

  • ensure the person's voice is heard and their rights are respected in all discussions

  • aim to empower the person to develop personal agency, self-advocacy and confidence

  • are independent of any provider service

  • share information they receive with the person they are supporting

  • challenge decisions and poor practice

  • know what to do about safeguarding

  • have a role in protecting a person's rights and promoting wellbeing

  • are involved in non-instructed advocacy and know what this is.

1.10.4 Providers of training on advocacy should:

  • tailor training to practitioners' roles and responsibilities

  • include people with lived experience of using advocacy services when designing and delivering training

  • be able to deliver training in different formats, including face-to-face, digitally (for example, as e‑modules) and self-paced.

1.10.5 Health and social care providers should check that practitioners are using the knowledge and understanding of advocacy obtained through training, in their day-to-day practice, for example through supervision and reflective practice.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on training and skills for health and social care practitioners who work with advocates.

Full details of the evidence and the committee's discussion are in:

1.11 Monitoring services and collecting data for quality improvement

Agreeing outcomes

1.11.1 Advocacy service providers, commissioners, people who use advocacy services and other stakeholders should work together to agree:

  • what service-level outcomes should be achieved (for example, making sure people's voices are heard, improving people's experience of safeguarding, empowerment and reducing health inequalities)

  • how these outcomes will be reported (for example, information on outcomes could be separated out based on protected characteristics or other disadvantaged groups, such as those experiencing health inequalities).

1.11.2 Advocacy service providers and commissioners should work together to agree how they will record their progress against the service-level outcomes.

1.11.3 When monitoring advocacy services, advocacy providers and commissioners should measure outcomes that show the impact of advocacy on:

  • people using an advocate (for example, to what extent they feel, or are, protected from harm, and the effects on their voice being heard, personal control and independence, their opportunities, challenging injustice and having their rights upheld)

  • the health and care system (for example, the effects on the quality-of-service response and experience of people using it, person-led decision making and health inequalities)

  • communities (for example, the effects on social inclusion; access to community services; and opportunities for people to contribute positively to society and get involved in their local community and engage with local forums, such as partnership boards and Safeguarding Adults Boards)

  • the way advocacy services are run (for example, the effects on access to advocacy, governance and best practice; co‑production; and how advocacy is delivered).

What data to collect

1.11.4 Commissioners should ensure that measuring outcomes or monitoring activity does not compromise the independence or integrity of the advocacy provider, or individual privacy.

1.11.5 Advocacy providers, in partnership with commissioners, should record anonymised information on people who use advocacy services, including:

  • protected characteristics in the Equality Act 2010

  • the main subject of advocacy support

  • identified health inequalities

  • communication need and preferences

  • reasons for referral

  • type of location or residence (such as urban, rural, care home or independent accommodation)

  • whether the advocacy provided is instructed or non-instructed.

1.11.6 Advocacy providers should collect information about the impact of their services. Types of information include:

  • survey data (such as satisfaction with the service provided)

  • examples or short case studies describing how outcomes have changed as a result of advocacy

  • the number of people reporting a particular outcome or the proportion of people who achieved a particular outcome

  • detailed feedback on the experiences and views of people using advocacy services.

1.11.7 Local authorities and commissioners should monitor:

  • whether health and social care providers are telling people about advocacy and the criteria for accessing it and take steps where there are gaps in this

  • access to advocacy and take up of it by different populations in the local community.

1.11.8 Commissioners should check that advocacy providers have a robust method of quality assurance that monitors and reports on their quality of service.

How to collect data

1.11.9 Advocacy providers, in partnership with commissioners, should develop shared, consistent, practical and robust methods to record and collect information and data.

1.11.10 Advocacy providers, in partnership with commissioners, should tailor the formats and methods of seeking feedback about advocacy support to the person's communication needs and preferences.

1.11.11 Advocacy providers should find ways of gathering feedback that maximise the person's ability to provide that feedback anonymously and without the input of the advocacy provider.

Evaluating and sharing data

1.11.12 Commissioners should use the outcomes, data and information on user demographics and the impact of advocacy services to evaluate the effectiveness and quality of current advocacy services and to plan future services.

1.11.13 Commissioners, advocacy providers and health and social care providers should work together to evaluate data they have collected on advocacy services. They should use this to make any changes that are needed to health, social care or advocacy services so that they meet the needs of all communities within the local population, including under-represented groups, those with protected characteristics or those experiencing health or other inequalities.

1.11.14 Commissioners and advocacy providers should share insights and key information on common trends and themes from data they have collected on advocacy services and issues affecting people using advocacy services with relevant stakeholders. For example, health and social care providers, voluntary and community sector organisations, the Care Quality Commission, Safeguarding Adults Boards, integrated care partnerships and boards and local Healthwatch.

Monitoring advocacy in safeguarding

1.11.15 Local authorities and commissioners should monitor how advocates are involved in supporting people experiencing safeguarding concerns.

1.11.16 Safeguarding Adults Boards should be assured that local authorities have auditing processes in place to monitor how people and their advocates are included in safeguarding processes.

1.11.17 Advocacy providers should report to Safeguarding Adults Boards on the extent to which partner organisations fulfil statutory duties for advocacy and safeguarding.

Adhering to statutory duties

1.11.18 Commissioners and health and social care providers should ensure that they:

  • consistently adhere to and monitor the statutory duties to refer to and involve advocacy

  • address failures in the duty to refer to statutory advocacy.

For a short explanation of why the committee made these recommendations and how they might affect practice or services, see the rationale and impact section on monitoring services and collecting data for quality improvement.

Full details of the evidence and the committee's discussion are in:

  • National Institute for Health and Care Excellence (NICE)