Mind guide to advocacy

Please give feedback on this information

Copyright note: professionals are not permitted to print off copies for distribution to colleagues or clients. For more information see Mind's copyright guidelines.

This booklet can also be viewed as a non-printable pdf file or purchased from the online shop.

What is advocacy?
What kind of advocacy do I need?
When might I need an advocate?
Who are the services for?
How do I find a suitable advocate?
How do I work with an advocate? 
What if no formal advocacy is available in my area?
References
Useful organisations
Further reading

'I have an assessment coming up for my incapacity benefit, which is worrying me. I could do with some support!'

'Very often it feels like it's you against the hospital. Somebody to help you would make you feel stronger and more secure. An advocate could help you to express your views in a constructive way.'

'People don't need an advocate all the time. But they need to know that advocacy is available and how to make contact, if the need arises.'

'Advocacy is about empowerment, autonomy, citizenship and inclusion.'

An advocate is someone who can both listen to you and speak for you in times of need.

What is advocacy?

Mental health advocacy has developed in the United Kingdom, over the last twenty years, as one way of challenging the discrimination faced by users and survivors of the mental health system. Advocacy in all its forms seeks to ensure that people are able to speak out, to express their views and defend their rights. Having a mental health problem, or experiencing mental distress, often means that your opinions and ideas are not taken seriously, or that you are not offered the opportunities and choices you would like. Being labelled with a diagnosis of mental illness is often linked to poverty, unemployment and exclusion from everyday life. In its simplest form, advocacy can mean just listening respectfully to someone.

For people who already experience discrimination and exclusion on the basis of their ethnic or cultural background, physical disability, gender, sexuality or age, having a mental health problem creates another barrier to social inclusion. It can make voicing opinions, wants and needs almost impossible.

Advocacy is a process of supporting and enabling people to:

• express their views and concerns
• access information and services
• defend and promote their rights and responsibilities
• explore choices and options.

An advocate might help you access information you need, or go with you to meetings or interviews, as a supportive presence. In some cases, you might want your advocate to be more active. An advocate might write letters on your behalf, or speak for you in situations where you don't feel able to speak for yourself. Friends, family and mental health professionals can all be supportive and helpful, but this may be difficult for them if you are doing things they disagree with, even though it's what you want. Health and social services staff have a 'duty of care' to the people they work with, which means that they can't support you in doing things that they think will be bad for you. But an advocate is independent, and will represent your wishes without judging them or putting forward their own personal opinion.

Back to top

What kind of advocacy do I need?

There are different kinds of advocacy, and diverse communities and groups understand advocacy in different ways, but advocacy in all forms shares some core beliefs. An advocate respects the views and wishes of the person they advocate for, without judgement, and believes in their right to access information, representation, services and opportunities. Although some advocates may be legally or medically qualified, in general, advocates are volunteers or paid workers who have been trained by the project or group they are part of. You can expect an advocate to have been given training in listening and negotiating skills. They should also have a knowledge of the basic legal framework and provision of mental health and community care services.

Self-advocacy
Self-advocacy is about speaking up for yourself and making your views and wishes clear. This can be very difficult to do at times, and there are skills and tools that can support self-advocacy, such as assertiveness training, crisis cards or advance directives, which set out your wishes in case of any crisis. Self-advocacy groups are groups of people who support each other in developing and using self-advocacy skills. Many people see self-advocacy as the ultimate aim of other forms of advocacy work. Most local user and survivor groups promote and include self-advocacy.

Group advocacy
Group advocacy (also known as collective advocacy) is where a group of people with similar experiences meet together to put forward shared views. Local mental health service-user groups, support groups and patient councils are all examples of group advocacy. There are also larger national groups, such as those that appear under Useful organisations, which campaign and advocate about issues raised by their membership. (See Useful organisations for details.)

Peer advocacy
Peer advocacy is support from someone with experience of using mental health services. Peer advocates can draw on their own experiences to understand and empathise with the person they are working with. Working with a peer advocate makes it easier for advocate and user to have an equal relationship. Some peer advocates and advocacy schemes work on an entirely voluntary basis, but the majority are now funded user- and survivor-run schemes with paid workers.

Formal, professional, or paid advocacy
Many voluntary organisations have developed advocacy services, which train and pay some or all of the advocates to work with anyone who wants to use their service. Although not always the case, this kind of advocacy is usually focused on short-term or 'crisis' work, rather than providing long-term support. Many of the advocates working for formal advocacy services are also users and survivors.

Citizen advocacy
Citizen advocacy matches people with partners who are members of their local community. Citizen advocacy partnerships tend to be long-term, supportive relationships. Most citizen advocacy schemes have paid coordinators, who train and support unpaid volunteer partners. As well as helping with specific situations, citizen advocacy partnerships are intended to support vulnerable people so that they can take a greater part in the life of their community.

Legal advocacy
People with specialist knowledge and training, such as lawyers and advice workers, are sometimes called 'legal advocates'. Legal advocates differ from other mental health advocates in that they represent people in formal settings, such as courts, tribunals or complaints processes. A legal advocate will often give advice and express their opinion about the best course of action.

'Best interests' (non-instructed) advocacy
'Best interests' advocacy is where an advocate represents what he or she feels a person's wishes would be, if they were able to express them. 'Best interests' work is not generally appropriate in mental health advocacy where people are well able to express their needs and opinions directly. Some mental health advocates working with older adults are trained to do 'best interests' work with those clients with dementia who are no longer able to communicate clearly. A specific example of 'best interests' advocacy is provided by Independent Mental Capacity Advocates (IMCAs) under the Mental Capacity Act 2005 (see below).

Back to top

When might I need an advocate?

Advocacy can be helpful in all kinds of situations where you are finding it difficult to make your views known, or to make people listen to them and take them into account. Mental health advocacy often focuses on accessing, using or complaining about mental health and community care services. Other common areas of work are connected with benefits, employment and education opportunities.

Advocacy in hospitals
The experience of an inpatient admission, whether voluntary or under a section of the Mental Health Act, can be confusing and disempowering. Exercising your right to be informed and involved in your own care and treatment is difficult when you are distressed or when your views may be discounted as part of your 'illness'.

In hospital, an advocate will help you get information about your legal rights, your medication or discharge plans. Advocates can be helpful in preparing for Mental Health Review Tribunals and other meetings, and can often attend meetings with you. If you want support on day-to-day issues in hospital, such as getting food that is appropriate to your religious or cultural background, or making sure your belongings are safe, an advocate will support you in making your concerns known to the staff. An advocate can assist you in finding out about the services that might be available when you leave hospital. Where you are unhappy with the service you are receiving, an advocate can support you through the complaints process.

Advocacy in the community
In the community, an advocate might assist you with a benefit claim, finding the right housing, or getting the community care services you want. An advocate can provide support if you want to complain about services you are not happy with. They might also help you find out about work, education or leisure opportunities in your area.

Advocacy under the Mental Capacity Act 2005
The Mental Capacity Act 2005 (due to come into force in April 2007) applies to people who lack the mental capacity to make a particular decision. The Act states that in certain situations, an Independent Mental Capacity Advocate (IMCA) must be appointed to help people who lack capacity to make a decision and have no one else to speak on their behalf. This could happen when an NHS body wants to provide 'serious medical treatment' or there are plans to provide the person with long-term accommodation in hospital or a care home. Note, if the person is detained under the Mental Health Act 1983 then the Mental Capacity Act does not apply and there is no duty to provide an IMCA.

Back to top

Who are the services for?

Most mental health advocacy services work with anyone in their area who wants to use the service. If you are having difficulty making your voice heard, or would like support or information about a situation you find yourself in, then you might like to talk to your local service.

Although some advocacy services have been set up to meet the needs of specific groups (such as minority ethnic communities, older adults, children, or gay, lesbian and bisexual people), most advocacy services are 'generalist'. This can make it harder to work with the advocates, as they may not understand your experience or the issues you face. If English is your second language, it may be difficult to find an advocate who can speak your community language.

If you would like an advocate from a specific group or community, and do not have a service in your area, try asking the generalist service. They may have an advocate with a similar background, or be able to accommodate you by making an arrangement with another service. If you can't find an advocate who shares your background, you could talk to someone from another group or service (such as your local Racial Equality Council), who may be able to fulfil an advocacy role (see Useful organisations).

Back to top

How do I find a suitable advocate?

If you would like to find out about advocacy services and groups in your area, you could start by contacting national organisations such as Mind (see Useful organisations). You could also contact your local Mind association, Patient Advice Liaison Service (PALS) in England, or Community Health Council in Wales.

Community Health Councils provide assistance and support with complaints about NHS services in Wales. Check your phone directory or call the Wales Board on 0845 644 7814 for local offices. PALS (Patient Advice Liaison Services) are provided by local NHS Trusts to resolve immediate problems and give information about pursuing NHS complaints in England. They are not independent of the hospital, but can refer people to an Independent Complaints Advocacy Service (ICAS). For your local PALS service, ask at your local hospital or GP surgery, or phone NHS Direct on 0845 46 47.

Unfortunately, not all areas have established mental health advocacy groups. If you don't have an advocacy service or group in your area, there are other organisations as well as PALS or Community Health Councils that might be able to provide support and advice, including local voluntary services, Racial Equality Councils and Citizens Advice Bureaux (see Useful organisations).

Back to top

How do I work with an advocate?

It is important that you find an advocate you are comfortable working with. Make sure you discuss with your advocate how they operate, and what you do and don't want them to do. These are some practical questions you might want to ask:

• How will I contact you, and when are you available?
• Can you come to meetings and appointments with me?
• What issues can you help me with?
• What can't you help me with?
• What records do you keep and who sees them?
• What is your confidentiality policy? What things won't you keep confidential?
• If you do something I am not happy with, how can I complain?
• Can you work with me if I am in hospital or if I am in the community?

You can usually take an advocate into health and social care meetings. The exception is where your psychiatrist believes that having an advocate present will have a significantly adverse affect on your mental health or might disrupt the meeting.

Back to top

What if no formal advocacy is available in my area?

Self-advocacy or group advocacy
In most areas there is a local user and survivor group that will already do self- and group advocacy work, on an informal basis. You can develop your own and others' advocacy skills by using some of the resources listed at the end of this booklet, or by taking part in local training programmes. If you are interested in working towards more formal self- or group advocacy, you should contact one of the organisations listed below.

Citizen advocacy or formal advocacy
If there is no advocacy scheme in your area and you are interested in supporting advocacy development, you might think about doing some of the following things:

• Contact your local Community Mental Health Team (CMHT) in England, or Health Authority in Wales. These bodies often commission advocacy services. You could ask what the plans are for developing advocacy in your area.
• Contact organisations that can help with advocacy development, such as the UK Advocacy Network and Mind (see Useful organisations).
• Contact nearby user and survivor groups and voluntary organisations to talk about local services and local need.

Back to top

References

Independent specialist advocacy in England and Wales: recommendations for good practice D. Barnes, T. Brandon (University of Durham)

Back to top

Useful organisations

Action For Advocacy (A4A)
PO Box 31856, Lorrimore Square, London SE17 3XR
tel. 020 7820 7868
web: www.actionforadvocacy.org.uk
Information and training on all forms of advocacy

The Advocacy Alliance
c/o Angie Lee-Foster, Head of Advice and Advocacy, The National Autistic Society, 393 City Road, London EC1V 1NG
tel. 020 7903 3763
web: www.advocacyalliance.org.uk
Coalition of organisations and service users aiming to improve access to advocacy

Association for Mental Health Advocates (AMHA)
59 North Street, Leeds LS2 8AY
web: www.amha.squarespace.com
Helps advocates to help mental health service users

Citizens Advice
115–123 Pentonville Road, London N1 9LZ
admin tel. 020 7833 2181
web: www.citizensadvice.org.uk
information online: www.adviceguide.org.uk
National office for the network of Citizens Advice Bureaux

Commission for Racial Equality (CRE)
St Dunstan's House, 201–211 Borough High Street, London SE1 1GZ
tel. 020 7939 0000
web: www.cre.gov.uk
Promotes racial equality and tackles discrimination

Together (formerly MACA)
12 Old Street, London EC1V 9BE
tel. 020 7780 7300
web: www.together-uk.org
Supports people with mental health problems

Older Persons Advocacy Alliance (OPAAL)
The Beth Johnson Foundation, Parkfield House, 64 Princes
Road, Hartshill, Stoke-on-Trent ST4 7JL
tel. 01782 844 036
web: www.opaal.org.uk
Promoting independent advocacy services for elderly people

WITNESS (formerly POPAN)
Delta House, 175–177 Borough High Street, London SE1 1HR
helpline: 08454 500 300
web: www.witnessagainstabuse.org.uk
For people abused by health or social care workers

UK Advocacy Network (UKAN)
Volserve House, 14–18 West Bar Green, Sheffield S1 2DA
tel. 0114 272 8171
web: www.u-kan.co.uk
Promotes and campaigns for independent user-led advocacy

Back to top

Further reading

Advocacy standards: standards for advocacy in mental health P. Wood (UKAN 2004)
Advocacy today and tomorrow: the UK Advocacy Network training tool P. Wood, G. Mullins (UKAN 2004)
Getting the best from your approved social worker (Mind 2004)
How to cope with hospital admission (Mind 2004)
How to parent in a crisis (Mind 2004)
Legal rights and mental health: the Mind manual (Mind 2006) (ask about regular update rates)
Making sense of antidepressants (Mind 2006)
Making sense of antipsychotics (major tranquillisers) (Mind 2004)
Making sense of electroconvulsive therapy (ECT) (Mind 2003)
Making sense of lithium (Mind 2004)
Making sense of minor tranquillisers (Mind 2003)
The Mental Health Act 1983: an outline guide (Mind 2006)
Mind rights guide 1: civil admission to hospital (Mind 2006)
Mind rights guide 2: mental health and the police (Mind 2006)
Mind rights guide 3: consent to medical treatment (Mind 2004)
Mind rights guide 4: discharge from hospital (Mind 2005)
Mind rights guide 5: mental health and the courts (Mind 2004)
Understanding anxiety (Mind 2006)
Understanding depression (Mind 2006)
Understanding learning disabilities (Mind 2004)
Understanding mental illness (Mind 2006)
Ward watch: Mind's report on hospital conditions for mental health patients (Mind 2004)

For a catalogue of publications that can be purchased from Mind, send a request with your address details to: publications@mind.org.uk or call 0844 444 4448.
Visit the online shop to see details of all the publications stocked.

This booklet was written by Nancy Kelley
First published by Mind 2000. Revised edition © Mind 2006
ISBN 1-874690-08-1
No reproduction without permission