Factsheet Independent Advocacy in England An independent advocate can support you when you are dealing with difficult issues and help you to get the care and support that you need. An advocate helps to ensure that you can express your wishes and views when in contact with authorities like your council or the NHS, and that your views are heard. This factsheet looks in more detail at what independent advocacy is, when it may be needed, and how to access it. It also provides useful contact details if you live in Scotland, Wales or Northern Ireland. Last reviewed: April 2015 Next review due: September 2016 Independent Age provides advice to help people claim benefits, access social care and stay independent at home. Our local volunteers provide friendship visits and calls for lonely older people. To find out how Independent Age can help you, call us FREE on 0800 319 6789 or visit. Our free wise guides and factsheets can be download from the website and ordered by phone or via our online order form.
Contents Why independent advocacy is important Page 3 Who is an independent advocate and what do they do? Page 5 What independent advocacy is and is not Page 7 Types of independent advocacy Page 9 Lack of mental capacity and advocacy Page 12 How does independent advocacy work? Page 16 Advocacy and human rights Page 19 Examples of how independent advocacy can work Page 22 Potential barriers to successful independent advocacy Page 24 Accessing independent advocacy through the council Page 26 Useful contacts: accessing independent advocacy Page 28 If you live in Scotland, Wales and Northern Ireland Page 31 Independent Advocacy in England - April 2015 2
1 Why independent advocacy is important If you are surrounded by family or professionals who all have an opinion on what care or support is best for you, you may feel powerless or unable to voice your own opinions. You may find it daunting or feel unable to influence or challenge the decisions that affect your life. If you are unhappy with the care you are getting or the situation you are faced with, you may need to challenge the individual or the organisation that is causing the problem, in order for things to change. This can be an intimidating and stressful experience. An independent advocate can help you to overcome these challenges. They can devote time to you and be on hand to respond to changes to your needs and situation. The advocate will talk to you one-to-one and then support you to voice your views and wishes, or can express your views and rights on your behalf to those involved with your care. In its simplest form, advocacy can mean just listening respectfully to you. Good to know Very often, advocacy support is available free of charge. Although independent advocacy may not always get the outcome that you want, research has found that in many cases, older people who made use of an advocate felt that: - someone was on their side - the independent advocate believed what they were saying - they had met someone who had tried to help them. Independent Advocacy in England - April 2015 3
Advocacy and your local council Your local council has a duty to provide you with an independent advocate if you do not have a family member or friend to represent you and you have substantial difficulty in understanding or engaging in your care assessment process, the care support plan or a review of your support arrangements. For more details, see chapter 10. The council also has a duty to commission advocacy services in your local area if you need support to make a complaint about local NHS services, including hospitals. This is known as the NHS Complaints Advocacy Service. For more details, see chapter 11. Independent Advocacy in England - April 2015 4
2 Who is an independent advocate and what do they do? An independent advocate is someone who you have asked, or given permission, to represent you. Your advocate can be a neighbour, a friend, a relative, a volunteer from an advocacy organisation or a paid independent advocate. What an independent advocate does An advocate will: - help you to speak out and have your views, wishes and rights taken into account by your family, carers or professionals when decisions need to be made which affect your life - make sure at each point that you have all the information you need so you can make informed decisions and choices - support you to voice your decisions and views or speak on your behalf. This may include making sure your views and wishes are explained and fully considered, as well as making sure that your rights are understood and defended. To do this, an advocate might go with you to meetings or interviews in a supportive role, or write letters on your behalf. What makes an advocate independent? An advocate must be truly independent if advocacy is to work. Some professionals, such as a social worker or nurse, may have an advocacy-type role as part of their overall job description. However, if your problem is connected to the policies or practices of social services or an NHS hospital, Independent Advocacy in England - April 2015 5
then it may be inappropriate for the social worker or nurse to act as your advocate. If you are to achieve the outcome you want or have a right to, the social worker or nurse may have to risk challenging their own manager or their agency s practices and policies. Some professionals may attempt to do this, but many admit that it is difficult because, ultimately, they are employed by that organisation. This is considered to be a conflict of interest, where the professional cannot fully act on your behalf as they have to be loyal to their employer. As a result, your voice may not be heard properly. There are many independent advocacy organisations where the advocates are not employed by the organisations providing the service you are unhappy with or want to access (such as NHS services, council support, or a care home). See chapter 1 for details of independent advocacy organisations. Independent Advocacy in England - April 2015 6
3 What independent advocacy is and is not Independent advocacy is: - being on your side - believing in you - speaking on your behalf or supporting you to speak - providing information (though citizen advocates may prefer to direct the person to other organisations for information) and discussing options - enabling you to make informed decisions and choices - ensuring that your rights, views and wishes are acknowledged and taken into account by others - putting aside the individual values of the independent advocate - exhausting all avenues to try to achieve the outcome you want or have a right to. Independent advocacy is not: - influencing you to make a decision - making a decision for you - advising you on the course of action to take - persuading you to do what other people want you to do - doubting what you say or the outcome you want - counselling you - speaking for you when you want to speak for yourself. Good to know Independent advocacy is not usually about legal representation, or paying a solicitor or lawyer to act as your advocate. However, your independent advocate could appear in court to speak on your behalf, eg - at a deputyship hearing Independent Advocacy in England - April 2015 7
(when the Court of Protection is applying to appoint someone to manage your affairs on your behalf). To do.. If you need specialist legal advice, you could contact Civil Legal Advice to find a solicitor specialising in community care law. They can also advise on legal aid eligibility (0345 345 4 345, gov.uk/civil-legal-advice). The Law Society website also provides contact details of solicitors in your area (020 7320 5650, lawsociety.org.uk). Free initial legal advice may also be available via the Disability Law Service ( dls.org.uk, 0207 791 9800) and The Bar Pro Bono Unit ( barprobono.org.uk, 0207 092 3960). Independent Advocacy in England - April 2015 8
4 Types of independent advocacy There are different types of independent advocacy. The main types are: - crisis (or issue-based) advocacy - citizen advocacy - self-advocacy - non-instructed (or best interests ) advocacy. Crisis advocacy This is the type of advocacy that people need to access most often. Crisis advocacy tends to be short-term, lasting anything from one day to six months, although it can be longer depending on how complex your situation is. The advocate will focus on one issue or aspect of your life (eg your wish to challenge the decision to discharge you from hospital to a care home). The advocate will stay involved until the outcome that you want is achieved, or until all possible avenues to achieve it have been exhausted. Citizen advocacy Citizen advocacy can be more long-term than crisis advocacy. It matches people with disabilities to advocacy partners who are members of their local community. Here, the partnership takes more time to form as you spend more time together, perhaps every day, so it is important that you and the advocate feel comfortable together. Citizen advocates may be able to advocate on a number of issues on your behalf as the relationship is designed to support you in many aspects of your life. The citizen advocate may not belong to a specific advocacy scheme, Independent Advocacy in England - April 2015 9
eg - they may be a neighbour or a volunteer from the community you live in. Self-advocacy Self-advocacy is about speaking up for yourself, either individually or in a group, and making decisions about issues that affect your life. Since it can be difficult to find the confidence to speak out, self-advocacy schemes help you to build your skills using tools such as assertiveness training and crisis cards to help you to set out your preferences. Self-advocacy may be an option if a group of you are affected by the same issue (eg, a residents group in a care home). Non-instructed advocacy Non-instructed advocacy, or best interests advocacy, supports people who are in need of an advocate but are not able to tell the advocate what they want. This may be because of communication difficulties, severe learning disabilities or dementia. Non-instructed advocacy is about representing what the person s wishes and preferred choices would be, if they were able to express them. This is achieved by: - trying different ways to communicate with the older person - ensuring they are not ignored when decisions are made - gathering information about them and building up an idea of their past views and preferences so the advocate can, as far as possible, understand their needs, wishes and priorities - ensuring that every possibility is looked at - treating the older person with respect. Independent Advocacy in England - April 2015 10
To do... You should discuss which type of advocacy is best suited to your situation when you approach an organisation about getting advocacy support. See chapter 11 for details of organisations that offer advocacy. Good to know There are also specific independent advocacy services to represent people who are subject to the Mental Capacity Act 2005 and Mental Health Act 1983. For more details, see chapter 5. Independent Advocacy in England - April 2015 11
5 Lack of mental capacity and advocacy Who lacks mental capacity? You are considered to lack the capacity to make decisions for yourself if you are unable to do one or more of the following: - understand the information relevant to the decision - retain the information long enough to be able to make a decision - use or weigh up the information - communicate the decision by any possible method. Assessing someone s mental capacity By law, it must never be assumed that someone lacks capacity, as assuming this may deprive someone of their rights. It is important, particularly if there is a dispute or difference of opinion, that someone s mental capacity is assessed by psychiatric services that specialise in mental health for older people. Mental capacity is time and issue specific (eg, the older person may be able to make some decisions but not others, and the capacity assessment should focus on the issue which is under consideration). Good to know When an older person lacks mental capacity, perhaps due to dementia or another mental health problem, it is still possible for independent advocacy to work. Independent Advocacy in England - April 2015 12
There are independent advocates trained specifically to communicate and work with people who have dementia and other mental health problems (see below). Advocacy if someone lacks mental capacity Advocacy for someone who lacks mental capacity is important because: - your past wishes, by law, should be taken into consideration, (eg, you may have regularly stated you wished to stay in your own home rather than move into a care home) and an advocate will ensure your wishes are taken into account by those involved in your care - if you have dementia or other mental health problems you may not be able to process complex information, but you may be able to make one-off important decisions, such as where to live or who you live with - an advocate will ensure your rights, needs and wishes are taken into account by those involved in your care if there is any conflict of interest. Eg, a doctor, nurse or social worker may need to balance your needs and wishes against their budget or workplace policies. Independent Mental Capacity Advocates (IMCAs) An Independent Mental Capacity Advocate (IMCA) may get involved if a serious welfare decision needs to be made about someone who lacks mental capacity, such as a decision about medical treatment or a change of residence. This is more likely if the person does not have any family or friends that can be consulted (or where it is judged to be inappropriate or impractical to consult family or friends about the decision). Council or NHS staff have a duty to Independent Advocacy in England - April 2015 13
refer people to an IMCA if they need to make such a decision. How it works The IMCA will meet with the person to gather as much information as possible about what their wishes are and what they would like to happen. If it is not possible to establish what the person thinks about a decision, the IMCA should act in their best interests in a similar way to non-instructed advocacy (see chapter 4). They should represent the person s rights and past wishes (if known) to the professionals involved in their care and treatment. The Social Care Institute of Excellence provides a list of IMCA providers ( scie.org.uk/publications/imca/find.asp, 020 7535 0900). Independent Mental Health Advocates (IMHAs) The following people have a legal right to an independent mental health advocate (IMHA) to help make their wishes heard and their rights protected. This comes from the Mental Health Act 2007: - people receiving compulsory treatment for a mental health condition - people getting supervised community treatment for a mental health condition - people considering serious treatment, such as neurosurgery, as a result of a mental health condition. You may also benefit from the support of an IMHA if you have a mental health problem such as dementia, or a diagnosed mental health illness and you have no suitable family or friends to represent you. Independent Advocacy in England - April 2015 14
See chapter 10 for more detail about your local council s duty to provide you with an advocate in certain circumstances, and chapter 11 for contact details of other organisations that may be able to help you find an advocate who is trained to work with mental health issues. Independent Advocacy in England - April 2015 15
6 How does independent advocacy work? Step one: Meeting with an advocate Once you have contacted an advocacy organisation (see chapter 11), an advocate should arrange a private meeting with you to discuss the support you need. If you live in a care home, sheltered housing or are a patient on a hospital ward, they should first, for security reasons, notify the care home manager, charge nurse or warden of their planned visit. They should explain: - their role - how they would support you - what the advocacy organisation does. The conversation should be completely confidential so that you can speak openly to the advocate about the issue(s) affecting you. Step two: Permission to advocate your views Although the independent advocate should listen to the views of others around you (your GP, carers, social worker, and family), your definition of the problem and the outcome you want, should be their most important concern. Once the independent advocate knows your views and wishes, they need your permission to advocate for you. For a description of the type of advocacy where someone is not able to give their permission, see chapter 4 of this factsheet. If you give permission then, and only then, does the person become your independent advocate. The independent Independent Advocacy in England - April 2015 16
advocate should then ask you what outcome you want, ie how you would like the problem to be resolved. This outcome is the ultimate aim of independent advocacy, unless you decide to change it at a later date based on ongoing information and circumstances. Your advocate should help make sure that you are always fully informed of any developments to the situation. Step three: Speaking out The independent advocate should support you to speak out or represent your views, wishes and rights to those involved in your care, eg professionals, carers and family. The advocate may also explain your views and wishes in terms of your legal rights in law and government policy. Eg, they may tell the professionals involved in your care that not only do you want to go back home but you have a legal right to be able to decide where you live because of your mental capacity to make this decision. The advocate should ensure that your views and wishes are conveyed to the people you want to express them to (or to support you to be able to say it yourself, if you want to). This could be done by letter, telephone or in person (eg, by attending a case conference or a meeting with you or on your behalf). Independent Advocacy in England - April 2015 17
Who is in charge in advocacy work? You should always be in charge. You have given your view of the problem and decided the outcome you want. You can also end the advocacy partnership at any time, whether the outcome you asked for has been achieved or not. The independent advocate should not try to persuade you to continue the process, whatever stage you have reached. It is your decision. It is the role of the advocate to inform you of all information relating to you and your situation, so that you can continue to make informed choices and decisions even though the nature of the original issue may change along the way. It is important that the independent advocate asks about your views and wishes and checks what outcome you want, on an ongoing basis. The independent advocate should then continue to voice your continuing or changed views to the other parties involved. Independent Advocacy in England - April 2015 18
7 Advocacy and human rights An independent advocate may be able to establish your rights in a particular situation by referring to the Human Rights Act 1998, which sets out your 16 most basic, fundamental rights, known as your human rights. An independent advocate (or more likely a legal representative) may also be able to challenge a decision by an organisation felt to be in breach of the Human Rights Act through the courts. Good to know The Human Rights Act only applies to public institutions, such as the NHS and councils. This means that care home residents who had their place organised by the council are covered by the Human Rights Act, but privately-funded residents who arranged their own care are not. Self-funding residents can still challenge their provider through: - their contract with the provider - The Local Government Ombudsman - the civil or criminal law - The Care Quality Commission standards. All care homes and other care providers should be registered with the Care Quality Commission, so you can challenge a provider if they don t meet the Commissions standards. The Human Rights Act Key points in the Human Rights Act include: Independent Advocacy in England - April 2015 19
- No one shall be subjected to inhuman or degrading treatment. (Article 3) Eg, people being cared for in a hospital or in a care home, are entitled to treatment which maintains their dignity and respect. - Everyone has the right to respect for his private and family life, his home and his correspondence. (Article 8) Eg, it may be possible to challenge this when an older person is being pressurised by a council to go into a care home, rather than being helped to maintain their independence at home because care in a care home is the cheaper option. - Everyone has the right to freedom of expression. (Article 10) Independent advocacy can help someone in this if they have problems expressing themselves. - Rights and freedoms should be enjoyed without discrimination on any ground. (Article 14) One example of discrimination is age discrimination - someone may be treated or cared for in a certain way because they are considered to be old. No one should receive different treatment or experience negative attitudes simply because of their age. To do... If you are affected by any of the above issues, you should get further advice from an advice service such as Independent Age Independent Advocacy in England - April 2015 20
(0800 319 6789, advice@independentage.org) who can advise you on your rights to services and direct you to other organisations. You may want to take legal advice from Civil Legal Aid (CLA) (0345 345 4345, gov.uk/civil-legal-advice) or Liberty, a charity specialising in human rights law (0845 123 2307, liberty-human-rights.org.uk). Independent Advocacy in England - April 2015 21
8 Examples of how independent advocacy can work Example 1: Susan Susan wanted to complain about her care worker, who the council had arranged to come round once a day and help her to get washed and dressed. She was worried about making a complaint, in case her care suffered as a result. She also didn t want the council to think that she was ungrateful for the help that they had arranged for her. She talked to a local advocacy organisation, and felt reassured when they listened to her concerns and said that they could voice her concerns to the council on her behalf, and if this didn t resolve things, they could help her to make a formal complaint through the council s complaints process. Example 2: Jim Jim is getting frail and feels that he needs some support to help him manage at home, but doesn t know where to start. He feels that the care system is complicated and confusing, and is worried about contacting the council as he is not sure if he is entitled to any help. Jim could contact an advice service like Independent Age (0800 319 6789) to find out what he is entitled to and how to go about getting help, or he could contact an independent advocate. An advocate could help Jim through the system by attending any assessments or meetings with the council with him, and making sure he understands his care options and rights. Independent Advocacy in England - April 2015 22
Example 3: Anita and John While Anita was in hospital, she was told that she shouldn t go home once she was discharged, as her care needs were too great and she would be better off in a care home. Anita did not want to move into a care home, and didn t feel like anyone was listening to her. John was surprised when the discharge date he was given was so soon after his operation he didn t feel well enough to look after himself at home, and no care had been arranged to help him. He wanted to challenge the discharge date, but didn t know how. An independent advocate could ensure that Anita and John s voices and rights are listened to by the professionals planning their discharge. Example 4: Patrick Patrick is being emotionally abused by workers in his nursing home. He feels intimidated and alone. He could contact an independent advocate to talk in confidence about his situation. He could then decide whether or not to take up the offer of advocacy to help him feel protected and stop the abuse. Independent Advocacy in England - April 2015 23
9 Potential barriers to successful independent advocacy Resisting the idea of independent advocacy Some professionals, carers and family members may not understand how independent advocacy should work. They may also not understand your right or need to have an independent advocate. This means they may not respond appropriately or they may resist working with the independent advocate. Independent advocacy is about changing the power imbalance and nature of the relationship between the professionals, carers and you when difficult decisions need to be made. Overcoming the barrier: the independent advocate, with your permission, should continue to seek a response from those involved, which may involve taking the issue to a more senior person. They could also explain the purpose of independent advocacy so that any misunderstandings can be addressed. 'Shooting the messenger' When the professionals, carers and other people who are acting on your behalf and in your best interests, are challenged, they may become defensive and try to exclude the independent advocate. They may do this by failing to keep the advocate involved or even refusing to deal with them, thereby dismissing your views within the decision-making process. Overcoming the barrier: the independent advocate may wish to acknowledge that they realise that those involved Independent Advocacy in England - April 2015 24
feel they are working in your best interest. He or she may need to reinforce what the role of an independent advocate is, and that the views they are expressing are vital as they belong to you. If necessary, they could make a formal complaint to the appropriate body on your behalf. 'Paying lip-service' Professionals, carers and other people involved in your life may agree to work with an independent advocate, but it may become apparent that no improvement to your situation is taking place, perhaps because a professional feels concerned about the impact independent advocacy may have on their work or they may feel anxious about something negative they have done becoming known. Overcoming the barrier: the independent advocate should quickly become aware that this is an issue and address it in a way that both ensures your views are acknowledged and that the person paying lip-service' is made aware that this is unacceptable behaviour. Independent Advocacy in England - April 2015 25
10 Accessing independent advocacy through the council If you have contacted your council to ask for their support to meet your care needs, they may have a legal duty to arrange an independent advocate for you. Councils in England must provide an independent advocate when someone is unable to communicate well or needs support to understand the issues being discussed with social care professionals. This only applies if: 1. you don't have anyone else (like a friend or family member) to support you. This could also apply if there is a conflict between family members, or if your family do not agree with your care decisions. and 2. you have 'substantial' difficulty doing any of the following: - communicating what you want to say - understanding the information given to you, or remembering it - weighing up the information you are given in order to make decisions about your support. This duty to arrange an independent advocate to support you applies at every key stage of getting services from the council, including: - the needs assessment this is how the council decides whether you qualify for any support from them - putting together a support plan, to show what services you think will best support you Independent Advocacy in England - April 2015 26
- reviewing your care this should happen at least once a year, to make sure your support is still meeting your needs - any meetings with professionals to discuss concerns about your safety, for example. Good to know Even if you the council does not have a duty to provide an independent advocate for you, you can still choose to have one anyway and can arrange this yourself. To do You could ask the council which local advocacy organisation they use, or contact one of the organisations listed in chapter 11. For more information about getting support from your local council, read our factsheet, Assessment and services from your local council in England (0800 319 6789, ). Independent Advocacy in England - April 2015 27
11 Useful contacts: Accessing independent advocacy You can refer yourself to an independent advocacy organisation. With your permission, a relative, friend, neighbour or carer who supports you can also make a referral to an advocacy organisation or help you to make a referral. A professional who feels that you may benefit from an independent voice' can also make a referral (and in many cases, they will have a legal duty to do so see chapter 10). If you are living in a care home, you may also be able to ask the care home manager and/or care workers for help to access independent advocacy. The care home staff have a duty to inform you of the availability of independent advocacy services. Your local council should be able to tell you about local advocacy schemes. Age UK Advocacy Services The Age UK Access to Advocacy Service (0800 169 6565, ageuk.org.uk) is available to anyone who needs information, advice, signposting or a referral to one of its advocacy services. The service is free, confidential and impartial. You can check with your local branch of Age UK to see if it offers an advocacy service. Independent Advocacy in England - April 2015 28
MIND MIND (0300 123 3393, mind.org.uk) is a mental health charity with local branches throughout the country. Some local branches offer advocacy services for people with mental health problems. National Coalition of Advocacy Schemes The National Coalition of Advocacy Schemes ( cacoalition.org.uk, 07821 688454) promote and support informal community based advocacy (citizen advocacy) schemes. NHS Complaints and Advocacy Service People with complaints about the NHS (including hospitals) can now get support and advice from local advocacy services. Councils have a duty to commission independent advocacy services to provide support for people making, or thinking of making, a complaint about their NHS care or treatment. This is known as the NHS Complaints Advocacy Service (0300 330 5454, nhscomplaintsadvocacy.org). In some areas, the service will also offer support for complaints about social care issues. Arrangements for this service will vary between different council areas. Older People s Advocacy Alliance (OPAAL) OPAAL ( opaal.org.uk) is a national organisation supporting, promoting and developing independent advocacy services for older people. OPAAL has an online database of local UK independent advocacy schemes specifically aimed at older people. Independent Advocacy in England - April 2015 29
Patients Advice and Liaison Service Patients Advice and Liaison Service (PALS) offices are available in all hospitals and offer confidential advice, support and information on health related matters to patients, families and carers. PALS may also be able to advise you on local advocacy schemes. POhWER POhWER (0300 456 2370; pohwer.net) provide free community advocacy services in many regions across England, for any adult who feels they need support in making a big decision or communicating their wishes and concerns. They also have specialist advocacy services. SEAP SEAP (0330 440 9000, seap.org.uk) also provides some NHS Complaints and Advocacy services and a range of other statutory and informal advocacy related services (including advocacy for people over 65), throughout the south of England. VoiceAbility VoiceAbility (0300 330 5454, voiceability.org) offers a wide range of statutory and informal advocacy services in many areas across England. It also delivers the NHS Complaints and Advocacy Service in many council areas. Independent Advocacy in England - April 2015 30
12 If you live in Scotland, Wales or Northern Ireland The types of advocacy services which are available and your rights to advocacy support (eg, through your local council) may be different in different parts of the UK. Some of the information provided in this factsheet may not apply outside of England. For up to date information about advocacy support in your area, or to access advocacy services, contact one of the organisations listed below. If you live in Scotland The Scottish Independent Advocacy Alliance (0131 55 66 443, siaa.org.uk) promotes and supports independent advocacy services across Scotland and the website offers an online database of advocacy services. If you live in Wales You can visit the Older People s Advocacy Alliance website ( opaal.org.uk) for details of advocacy services in the different areas. If you live in Northern Ireland Age NI Advice and Advocacy service (0808 808 7575, ageuk.org.uk/northern-ireland/about-us/our-work/advice-- advocacy-service-2/) offers free, independent and confidential advocacy support for people using (or needing to access) the health and social care system. Independent Advocacy in England - April 2015 31
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