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.
1.1.1 Advocacy must be offered according to the relevant legislation. The criteria for when and to whom to offer it are described in the:
1.1.2 Local authorities must make appropriate arrangements for independent advocacy services to provide assistance to people making or intending to make complaints as described in the Health and Social Care Act 2012.
For a summary, see box 1 on the legal entitlement to advocacy, as well as supporting information and resources on the Social Care Institute for Excellence's information on advocacy.
Box 1 Legal entitlement to advocacy
Care Act 2014
From the point of first contact, the local authority must appoint an independent advocate if an adult would experience substantial difficulty in any of these 4 areas:
And
There is thought to be no one appropriate and independent to support and represent the person, for the purpose of facilitating their involvement.
This applies to adults taking part in:
Care and Support (Independent Advocacy Support) (No. 2) Regulations 2014
The Care and Support (Independent Advocacy Support) (No. 2) Regulations is a Statutory Instrument, which adds to the Care Act 2014 section 67(2). It extends the circumstances in which a person is entitled to an independent advocate to where an assessment or plan is likely to result in a hospital stay of more than 28 days or a stay in a care home for more than 8 weeks (although there are some exceptions).
Mental Capacity Act 2005
An independent mental capacity advocate (IMCA) must be instructed, and then consulted, for people lacking capacity who have no one else to support them (other than paid staff), whenever:
And
An IMCA may be instructed to support someone who lacks capacity to make decisions concerning:
Mental Health Act 1983
People are eligible for support from an independent mental health advocate, irrespective of their age, if they are:
Health and Social Care Act 2012
The 2012 Health and Social Care Act amendment to the 2007 Local Government and Public Involvement in Health Act.
The local authority must make arrangements for independent advocacy services to provide assistance to people making or intending to make a complaint:
For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on legal right to advocacy.
Full details of the evidence and the committee's discussion are in:
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.
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:
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:
1.4.1 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:
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:
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:
1.5.1 Health and social care practitioners and other referrers should:
1.5.2 When the need for advocacy is identified, allow enough time:
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:
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:
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:
1.6.1 Advocacy providers should ensure that their advocacy service is accessible, for example by:
1.6.2 Advocacy providers should ensure that their advocacy service is person centred, for example by:
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:
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:
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:
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?
1.7.1 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:
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:
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:
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.
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:
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
Examples of life circumstances and experiences that could lead to discrimination or 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:
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:
1.9.1 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:
1.9.3 Advocacy services should provide training, skills development and support including induction, to their advocacy staff. Training could include:
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:
1.10.1 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:
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:
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:
1.10.4 Providers of training on advocacy should:
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:
1.11.1 Advocacy service providers, commissioners, people who use advocacy services and other stakeholders should work together to agree:
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:
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:
1.11.6 Advocacy providers should collect information about the impact of their services. Types of information include:
1.11.7 Local authorities and commissioners should monitor:
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.
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.
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.
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.
1.11.18 Commissioners and health and social care providers should ensure that they:
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: