4.1.8 Independent Advocacy

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1. Introduction

If an adult or carer has contacted Adult Social Care for advice or support or come to the attention of Adult Social care, they must be actively involved int the assessment and care and support planning processes and any safeguarding enquiry or safeguarding adults review (SAR). Under the Care Act, local authorities have a legal duty to provide independent advocacy to support adults through these processes if they would otherwise have substantial difficulty in being involved (see Section 3.1 Substantial difficulty).

The aim is for the adult’s wishes, feelings and needs to be at the heart of the assessment, care planning and review processes or any safeguarding enquiry or SAR.

2. Local Authority Responsibilities to Provide Independent Advocacy

The local authority has a duty to arrange an independent advocate for:

• all adults, as part of their own assessment and care planning and care reviews and to those in their role as carers;
• adults who are subject to a safeguarding enquiry or SAR.

There are two conditions which also need to be met for the provision of an independent advocate:

1. that if an independent advocate were not provided the adult would have substantial difficulty in being fully involved in these processes;
2. that there is no one else who can support and represent the adult’s wishes who is not paid or professionally engaged in providing care or treatment to them or their carer (see also Section 6.1 An appropriate person to support the adult).

The role of the independent advocate is to support and represent the adult, and to facilitate their involvement in the key processes and interactions with the local authority and other organisations as required for the safeguarding enquiry or SAR.

Local authorities also provide advocates for children who are approaching the transition to adult care and support, or who have a young carer’s assessment.

2.1 Exceptions

Usually and adult or carer who has substantial difficulty in being involved in their assessment, plan and review, will only be eligible for an advocate where there is no one appropriate to support their involvement.

The exceptions are:

• where completing  an assessment or care and support plan might result in placement in NHS funded provision in either a hospital for a period exceeding four weeks or in a care home for a period of eight weeks or more, and the local authority believes that it would be in the best interests of the adult to arrange an advocate;
• where there is a disagreement, relating to the adult, between the local authority and the appropriate person, and the local authority and the appropriate person agree that the involvement of an independent advocate would be beneficial to the adult.

3. Advocacy and the Duty to Involve

Adults must be involved fully in decisions made about them and their care and support or during a safeguarding enquiry or SAR.

The local authority must help adults to understand how they can be involved, how they can contribute and take part and, where appropriate, lead or direct the process.

Adults should be active partners in the key care and support processes of assessment, care and support planning, review and any enquiries in relation to abuse or neglect. No matter how complex the adult’s needs, local authorities are required to involve people, to help them express their wishes and feelings, to support them to weigh up options, and to make their own decisions.

This applies in all settings, including people living in the community, in care homes and in prisons (with the exception of safeguarding enquiries and SARs).

Many adults who qualify for advocacy under the Care Act will also qualify for advocacy under the Mental Capacity Act (MCA) 2005. The same advocate can provide support as an advocate under the Care Act and under the MCA. Whichever legislation the advocate is acting under, they should meet the appropriate requirements for an advocate under that legislation. However, there are differences between Care Act advocacy and IMCA. A Care Act advocate can support the adult throughout any Care Act process.  The IMCA’s role is to give advice when a best interests decision needs to be made. 

3.1 Substantial Difficulty

The local authority must form a judgement about whether the adult has substantial difficulty in being involved. If it is thought that they do, and there is no appropriate person to support and represent them, the local authority must arrange for an independent advocate.

3.1.1 Judging ‘substantial difficulty’

The Care Act defines four areas in which an adult may experience substantial difficulty:

1. Understanding relevant information: Often adults can understand relevant information with support; for example, if it is presented appropriately and if time is taken to explain it. Some adults, however, will not be able to understand relevant information, for example if they have mid-stage or advanced dementia.
2. Retaining information: If the adult is unable to retain information long enough to be able to weigh up options and make decisions, then they are likely to have substantial difficulty in engaging and being involved in the process.
3. Using or weighing the information as part of engaging: The adult must be able to weigh up information, in order to participate fully and choose between options. For example, they need to be able to weigh up the advantages and disadvantages of moving into a care home or leaving an abusive relationship. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process.
4. Communicating their views, wishes and feelings: the adult must be able to communicate their views, wishes and feelings either by talking, writing, signing or any other means, to aid the decision process and to make their priorities clear. If they are unable to do this, they will have substantial difficulty in engaging and being involved in the process. For example, a an adult with mid-stage or advanced dementia, significant learning disabilities, a brain injury or mental ill health may be considered to have substantial difficulty in communicating their views, wishes and feelings. It is the adult’s ability to communicate their views, wishes and feelings which is key to their involvement rather than the diagnosis or specific condition.

Both the Care Act and the Mental Capacity Act recognise the same areas of difficulty, and both require adults with these difficulties to be supported and represented, either by family or friends, or by an independent advocate or independent mental capacity advocate in order to communicate their views, wishes and feelings. However, the adult does not need to lack  mental capacity for an independent advocate to be considered.

4. When an Independent Advocate must be Provided

4.1 Assessment of needs

From the point of first contact, request or referral (including self-referral) for an assessment, the local authority must involve the adult (see Assessment chapter). Practitioners must consider the most appropriate and proportionate way of involving the adult in the assessment processes. In some cases this may be relatively brief, in others it may consist of a series of interviews, in the adult’s own home or other care settings, over a period of time.

The identification of a potential need for advocacy may come from the adult themselves, carers or family. Where an authority has outsourced or commissioned all or some of this process, the authority will maintain overall responsibility for making this judgement.

Where the local authority considers that the adult does have substantial difficulty in engaging with the assessment process, then they must consider whether there is anyone appropriate who can support the adult to be fully involved. This might for example be a carer (who is not an employee or paid), a family member or friend. If there is no one appropriate, then the local authority must arrange for an independent advocate. The advocate must support and represent the adult in the assessment, in the care and support planning, and the review.

This applies to the following, conducted under the Care Act:

• a needs assessment;
• a carer’s assessment;
• the preparation of a care and support plan or support plan;
• a review of care and support plan or support plan;
• safeguarding processes.

As part of the assessment and the care and support plan, the local authority must consider how to help protect the adult from abuse and neglect, assisting them to identify any risks, and how these can be managed. The local authority must also make sure that any restriction on the adult’s rights or freedom are kept to the minimum necessary. Restrictions should be carefully considered and frequently reviewed. Any potential deprivation of liberty must be authorised, either by the local authority or the Court of Protection (see Deprivation of Liberty Safeguards and Mental Capacity chapters).

4.2 NHS Continuing Healthcare

See NHS Continuing Healthcare chapter

Where it appears that the adult may be eligible for NHS Continuing Healthcare (NHS CHC), local authorities must notify the relevant NHS body. NHS CHC is a package of ongoing care that is arranged and funded solely by the NHS because the adult has complex ongoing healthcare needs that are a ‘primary health need’ as set out in The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

Where an adult is not eligible for NHS CHC, local authorities must carry out an assessment of needs where the adult has an appearance of need. It must meet needs which are assessed as eligible (see Assessment chapter) and consider if there is a need for an independent advocate to support the adult’s involvement in their assessment.

4.3 Joint care packages

The Care and Support Statutory Guidance applies equally to adults whose needs are being jointly assessed by the NHS and the local authority or where a package of support is, planned, commissioned or funded by both a local authority and an Integrated Care Board (ICB), known as a ‘joint package’ of care.

These processes and arrangements are sometimes difficult for adults, their carers, family or friends, to understand and be involved in. Local authorities (with ICBs) will therefore want to consider the benefits of providing access to independent advice or independent advocacy for those who do not have substantial difficulty and/or those who have an appropriate person to support their involvement.

4.4 Independent Mental Health Advocate

Under the Mental Health Act (MHA) 1983, ‘qualifying patients’, are entitled to the help and support from an Independent Mental Health Advocate (IMHA).

Section 117 of the MHA places a duty on the NHS and local authorities to provide aftercare and this will usually involve a joint assessment (often under the Care Programme Approach) including an assessment of the adult’s care and support needs, a care and support or support plan and subsequent review (which may reach a decision that a adult is no longer in need of aftercare).

If the adult does not have a  right to an IMHA, but their care and support needs are being assessed, planned or reviewed, they should be considered for an advocate under the Care Act, if they have substantial difficulty in being involved and if there is no appropriate person to support their involvement

4.5 Safeguarding enquiries and safeguarding adult reviews (SARs)

The local authority must arrange, for an independent advocate to support and represent an adult who is the subject of a safeguarding enquiry or a safeguarding adults review (SAR).

Where an independent advocate has already been arranged under the Care Act or under the MCA then, unless inappropriate, the same advocate should be used.

Effective safeguarding is about seeking to promote the adult’s rights as well as protecting their physical safety and taking action to prevent the occurrence or reoccurrence of abuse or neglect. It involves enabling the adult to understand any risks of abuse and the actions that they can take, or ask others to take, to reduce those risks.

If a safeguarding enquiry needs to start urgently it can begin before an advocate is appointed but one must be appointed as soon as possible.

Advocacy is especially important in supporting adults through difficult and / or sensitive processes (such as safeguarding enquiry or a SAR). Both can feel very daunting and involve the sharing of sensitive information which may lead to some difficult decisions. Adults who have been abused or neglected may be demoralised, frightened, embarrassed or upset, and the support of an independent advocate will be crucial.

4.6 Care and support reviews

The local authority must involve the adult, their carer and any other person that the adult wants to be involved in any review of their care and support plan, and take all reasonable steps to agree any changes (see Care and Support Planning chapter).

Local authorities must consider whether an advocate is required to facilitate the adult’s involvement in the review of a care and support plan and, if appropriate, appoint an advocate. This applies regardless of whether an advocate was involved at an earlier stage.

Examples of when an advocate may be appointed at this stage if not previously being involved:

• the adult’s ability to be involved in the process without an advocate has changed;
• the circumstances have changed (e.g. the adult’s involvement was previously facilitated by a relative who is no longer able to perform that role);
• an advocate should have been involved at the care and support planning stage and was not.

5. Continuity of Care and Ordinary Residence

The local authority which is carrying out the assessment, planning or review of the plan is responsible for considering whether an advocate is required. In the case of an adult who is receiving care and support from one local authority but decides to move and live in another authority, the responsibility will move with the care and support assessment (see Assessment chapter). For an adult whose care and support is being provided out of area (in a type of accommodation outlined in the  Ordinary Residence chapter) it will be the authority in which the adult is ordinarily resident.

6. Local Authority Decisions

6.1 An appropriate person to support the adult’s involvement

An appropriate person should be considered, as soon as the adult’s need for an independent advocate has been identified. An appropriate person is someone who can support the adult to be involved in the decision-making process, such as a family member or friend. For someone to act as an appropriate person, they must not speak on behalf of the adult, but have the skills to maximise their involvement. Positives to consider when family or friends as an appropriate person include:

• they know the adult best;
• they would most likely want to support the adult;
• they will likely be able to support the adult with any speaking or hearing difficulties, for example if the adult uses Makaton but has their own signs for different things.

However, family and friends:

• may not have the necessary skills to maximise the adult’s involvement in the process;
• may find it difficult to take a holistic approach and may only see what they believe is best for the adult;
• may not be wanted by the adult to act as their appropriate person as it may impact the dynamics between them;
• may find it difficult to support the adult they are in crisis and there is a conflict of interest.

When the local authority is considering whether there is an appropriate person(s) who can facilitate the adult’s involvement in the assessment, planning or review processes, there are three specific considerations:

1. they cannot be someone who is already providing the adult with care or treatment in a professional capacity or on a paid basis (regardless of who employs or pays for them). That means it cannot be, for example, the adult’s GP, nurse, key worker or care and support worker. (See also Independent Advocacy Case Studies.)
2. if the adult does not wish to be supported by that person, and they have mental capacity to make this decision, their wish should be respected. If the adult has been assessed as lacking the mental capacity to make a decision, then the local authority must be satisfied that it is in their best interests to be supported and represented by the person. Where an adult does not wish to be supported by a relative, for example, perhaps because they wish to be moving towards independence from their family, then the relative cannot be considered an appropriate person.
3. the appropriate person is expected to support and represent the adult and to facilitate their involvement in the processes. Some people will not be able to fulfil this role easily, for instance:
   • a family member who lives at a distance and who only has occasional contact with the adult;
   • a spouse who also finds it difficult to understand the local authority processes;
   • or a housebound parent.

It is not enough to know the adult well or to love them deeply; the role of the appropriate person is to support the adult’s active involvement with the local authority processes.

Anyone who is implicated in any enquiry of abuse or neglect or have been judged by a SAR to have failed to prevent an abuse or neglect is not suitable to support the adult in any of the processes.

Sometimes the local authority will not know at the point of first contact or at an early stage of the assessment whether there is someone appropriate to assist the adult in engaging. They may need to appoint an advocate, and find later that there is an appropriate person in the adult’s own network. The advocate can at that stage ‘hand over’ to the appropriate person. Alternatively, the local authority may agree with the adult, the appropriate person and the advocate that it would be best for the advocate to continue their role, though this is not a specific requirement under the Care Act.

Equally it is possible that the local authority will consider someone appropriate who may then turn out to have difficulties in supporting the adult to engage and be involved in the process. The local authority must at that point arrange for an advocate.

There may also be some cases where the local authority considers that an adult needs the support of both a family member and an advocate; perhaps because the family member can provide a lot of information but not enough support, or because while there is a close relationship, there may be a conflict of interest with the relative, for example in relation to inheritance of the home.

If the local authority decides that they are required to appoint an independent advocate as the adult does not have friends or family who can facilitate their involvement, the local authority must still consult with those friends or family members when the adult asks them to (see Assessment chapter).

It is the local authority’s decision as to whether a family member or friend can act as an appropriate person to support the adult’s involvement, and to communicate this decision to their friends and family.

Where two people in the same household are being assessed, and all parties agrees and the local authority is satisfied there is not conflict of interest, they may have the same advocate.

6.2 Who can act as an advocate?

Advocates must have:

• a suitable level of appropriate experience: this may, for example, be in non-instructed advocacy (for adults who do not have the mental capacity to instruct the advocate) or in working with adults who may have substantial difficulty in engaging with assessments and care and support planning;
• appropriate training: this may, for example, initially be training in advocacy (non-instructed and instructed) or dementia, or working with adults with learning disabilities. Once appointed, all independent advocates should be expected to work towards the National Qualification in Independent Advocacy (level 3) within a year of being appointed, and to achieve it in a reasonable amount of time;
• competency: this will require the advocacy organisation assuring itself that the advocates who work for it are all competent and have regular training and assessment;
• integrity and good character: this might be assessed through: interview and selection processes; seeking and scrutinising references prior to employment and ongoing DBS checks (see Disclosure and Barring Service chapter);
• the ability to work independently of the local authority or body carrying out assessments, planning or reviews on the local authority’s behalf: this includes the ability to make a judgement about what an adult is communicating and what is in their best interests, as opposed to in a local authority’s best interests, and to act accordingly to represent this;
• supervision: this will require that the advocate meets regularly and sufficiently frequently for supervision with a supervisor who has a good understanding of independent advocacy who is able to guide their practice and develop their competence.

The Advocacy Quality Performance Mark (QPM) is a tool for providers of independent advocacy to show their commitment and ability to provide high quality advocacy services.

To prevent potential conflict of interest, the independent advocate must not be working for the local authority, or for an organisation that is commissioned to carry out assessments, care and support plans or reviews for the local authority unless the potential conflict of interests is adequately addressed within the organisation’s structure.

In certain circumstances, in addition to their role under the Care Act, an advocate may assist the adult to develop their own care or support plan if requested to do so, but they cannot authorise the support plan or approve care and support plans or reviews on behalf of the authority. Nor can an advocate be appointed if they are providing care or treatment to the adult in a professional or a paid capacity.

7. The Role of the Independent Advocate

The advocate will decide the best way of supporting and representing the adult they are advocating for, always taking into account their wellbeing and interests (including their views, beliefs and wishes) of the adult. This may involve creative approaches, for example, supporting someone to show film to help explain their needs, wishes or preferences.

In addition, where practicable, they are expected to meet the adult in private. Where the adult has mental capacity, the advocate should ask for and obtain their written consent to look at their records and to talk to their carer, family, friends, care or support worker and others who can provide information about their needs and wishes, their beliefs and values.

Where an adult does not have the mental capacity to decide whether an advocate should look at their relevant records or talk to their family and friends, then the advocate should consult the records and the family and others as appropriate, but consulting the family and others only where the advocate considers this is in the adult’s best interests.

Acting as an advocate is a responsible position. It includes:

• assisting the adult to understand the assessment, care and support planning and review and safeguarding processes. This requires advocates to understand local authority policies, and other agencies roles, and processes, the available assessment tools, the planning options, and the options available at the review of a care or support plan are required and good practice in safeguarding enquiries and SARs. It can involve advocates spending considerable time with the adult, understanding their communications needs, their wishes and feelings and their life story, and using all this to assist the adult to be involved and where possible to make decisions;
• assisting the adult to communicate their views, wishes and feelings to the staff who are carrying out an assessment or developing a care or support plan or reviewing an existing plan or to communicate their views, wishes and feelings to the staff who are carrying out safeguarding enquiries or reviews;
• assisting the adult to understand how their needs can be met by the local authority or otherwise – understanding for example how a care and support and support plan can be personalised, how it can be tailored to meet specific needs, how it can be creative, inclusive, and how it can be used to promote the adult’s rights to liberty and to family life;
• assisting the adult to make decisions about their care and support arrangements – assisting them to weigh up various care and support options and to choose the ones that best meet the adult’s needs and wishes;
• assisting the adult to understand their rights under the Care Act – for an assessment which considers their wishes and feelings and which considers the views of other people; their right to have their eligible needs met, and to have a care or support plan that reflects their needs and their preferences, and in relation to safeguarding, understanding their right to have their concerns about abuse taken seriously and responded to appropriately. Also assisting the adult to understand their wider rights, including their rights to liberty and family life;
• assisting the adult to challenge a decision or process made by the local authority; and where they adult cannot challenge the decision even with assistance, then to challenge it on their behalf.

Benefits of independence advocacy, include:

• the adult feels empowered;
• their wishes and feelings are heard;
• supporting joined up working between all involved;
• it uses a strengths-based way approach and helps the adult feel more in control of their life.

7.1 Safeguarding issues

In relation to safeguarding there are some particularly important issues for advocates to address. These include assisting the adult to:

• decide what outcomes / changes they want;
• understand the behaviour of others that are abusive / neglectful;
• understand which actions of their own may expose them to avoidable abuse or neglect;
• understand what actions that they can take to safeguard themselves;
• understand what advice and help they can expect from others, including the criminal justice system;
• understand what parts of the process are completely or partially within their control;
• explain what help they want to avoid reoccurrence and also recover from the experience.

7.2 Representing the adult

There will be times when an advocate will have concerns about the way the local authority has acted, the decisions that have been made or the outcomes proposed. The advocate must write a report outlining their concerns, and the advocate and the local authority to meet to consider these. After this meeting, the local authority should provide a response in writing.

Where the adult does not have mental capacity, or is not otherwise able, to challenge a decision, the advocate must challenge any decision where they believe the decision is inconsistent with the local authority’s duty to promote the adult’s wellbeing.

Where the adult has been assisted and supported and nevertheless remains unable to make their own representations or their own decisions, the independent advocate must use what information they have, to make the representations on their behalf.

This means the advocate should put the case on the adult’s behalf, scrutinise the options, question the plans if they do not appear to meet all eligible needs or do not meet them in a way that fits with the adult’s wishes and feelings, or are not the least restrictive option, and to challenge local authority decisions where necessary.

The ultimate goal of this representation is to secure the adult’s rights, promote their wellbeing and ensure that their wishes are taken fully into account.

8. The Role of the Local Authority in Supporting the Advocate

An advocate’s duty is to support and represent people who have substantial difficulty in engaging with the local authority processes, therefore the local authority must take into account any representations made by an advocate. A written response should be provided to a report from an advocate which raises concerns about how the local authority has acted or what decision has been made or what outcome is proposed. The local authority should understand that the advocate’s role incorporates ‘challenge’ on behalf of the adult.

The local authority is responsible for ensuring that the relevant staff are aware of the advocacy service and the authority’s duty to provide such services (see Information and Advice chapter).

The local authority should take reasonable steps to assist the advocate in carrying out their role by informing other agencies that an advocate is supporting the adult, and facilitating access to them and to their records. The completion of an assessment and care and support planning should allow time for the advocate to take into consideration the needs of the adult’s family, friends or paid staff. They should keep the advocate informed of any developments and of the outcome of the assessment and the care and support plan.

9. Further Reading

9.1 Related chapters

Mental Capacity

Assessment

9.2 Supporting information

Chapter 7, Independent Advocacy, Care and Support Statutory Guidance (Department of Health and Social Care)

Advocacy Services for Adults with Health and Social Care Needs (NICE)

Independent Advocacy Case Studies, Resources

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