Independent advocacy: guide for commissioners

1. Introduction

1.1 The importance of advocacy

1.1.1 Advocacy plays an important role in supporting people to express their views and in providing a source of support which gives them the confidence to speak out. Advocacy is vital in nurturing trust and effectively supporting people to ensure their views are taken into account and that they are heard. It should also provide an environment in which they can confidently raise any concerns they may have with their advocate in the knowledge that there are no conflicts of interest.

1.1.2 Advocacy enables people to be involved in decisions which affect their lives. It helps them to express their views and wishes, to access information, to make informed choices and to have control over as many aspects of their lives as possible.

1.1.3 Advocacy:

• Safeguards people who can be treated unfairly as a result of institutional and systemic barriers as well as prejudice and individual, social, and environmental circumstances that make them vulnerable
• empowers people who need a stronger voice by enabling them to express their own needs and make their own decisions
• enables people to gain access to information, explore and understand their options, and to make their views and wishes known
• speaks up on behalf of people who are unable to do so for themselves.

1.1.4 Advocacy has two main themes:

• Speaking up for and with people who are not being heard, helping them to express their views and make their own decisions and contributions
• Safeguarding individuals who are at risk.

1.1.5 Advocacy is a crucial element in achieving social justice. It is a way to ensure that everyone matters and everyone is heard - including people who are at risk of exclusion and people who have particular difficulties in making their views known. The importance of advocacy is reflected in a range of recent legislation and policy guidance and we have included further useful reference material and links (which is not an exhaustive list) in Appendix 3.

1.1.6 Advocacy is part of everyday life. It is an ordinary activity. Many of us will at some point in our lives look to the support of someone we trust to help us speak up for ourselves to get our voice heard about decisions or actions that affect our lives. The most confident and articulate among us can feel less able to cope when ill, stressed or feeling under pressure. In these circumstances it can be difficult to ask questions about concerns. It is at these times that the support of an advocate can make all the difference to someone's quality of life.

1.1.7 However, some people in society are much more likely than others to be treated unfairly because of other people's prejudice and/or because of individual, social and environmental circumstances that make them vulnerable. Factors which might put people at risk include age, physical frailty, disability, gender, ethnic origin, sexual orientation, impairment (cognitive, psychological, motor, sensory), reputation, dislocation, abuse, family breakdown and social isolation.

1.1.8 Some people have to rely on powerful service systems for help with all aspects of their life - health and wellbeing, housing, personal assistance, decision-making, income, occupation, mobility. This can happen particularly when people have been immersed in the service system since childhood, and when they have no strong allies outside institutions. Support services can affect every aspect of someone's life and can have long term consequences.

1.1.9 Individuals who rely on these service systems often have limited personal power and resources to argue their case. This is especially true for example for people who do not use words to communicate, for children and young people, for people who have learning disabilities or those who cannot read or write in the language of the system, for people who have a negative reputation within the system, for people who are physically frail and for people who are regarded as incapable of making decisions.

1.1.10 If these individuals do not have well-motivated and capable family, carers and friends to speak up for them, they are at risk of not receiving the treatment or social care and support that is appropriate to meet their needs. They may not have their own views, wishes and feelings taken into account properly, as is their right. They are also the least likely people to exercise their right to make a complaint. Even capable and positive family, carers and friends may not be able to ensure that the individual's views are taken into account.

1.1.11 The Guidance will apply equally to advocacy for those under 16, whether they live in the community, are detained or are "looked after". However, there are some key factors that need to be taken into account and supplementary guidance specifically in relation to advocacy for children and young developed in consultation with key stakeholders will be available in Spring 2014. Advocacy for children often necessitates a fairly close working relationship with the parents (unless that is not appropriate). Advocates should be clear (with themselves and others) that they are advocating for the child, not the parent, though their views may be similar.

1.1.12 Commissioners may find it helpful to refer to:

• A Voice Through Choice - a book of stories about independent advocacy and A Voice to Trust on DVD (2008) produced by the Scottish Independent Advocacy Alliance ( SIAA)
• AWOL (Absent without Leave Invisible When Here) - a book of poems in celebration of advocacy by Jo McFarlane published by the Scottish Independent Advocacy Alliance in 2013.

1.1.13 We have used a few of the poems from AWOL in this Guide. Hopefully these and the Voice through Choice material, which are available from the SIAA, will help commissioners and others gain an insight into how advocacy can improve an individual's quality of life and provide a better understanding of how different models of advocacy work in practice. Further information on the different models of advocacy is given in Section 2 of the guidance.

1.1.14 Individuals may also be unaware of their rights. The Charter of Patient Rights and Responsibilities launched on 1 October 2012 provides a summary of rights and responsibilities when using NHS services. This includes the patient's right to have their needs taken into account when receiving NHS services; the right to be involved in decisions about their care and treatment; and the right to request support when making decisions about their health care.

1.1.15 The Patient Advice and Support Service ( PASS) was established in April 2012 to provide advice and support and will also raise awareness of patients' rights. PASS does not provide advocacy but can signpost people to the support services available to them and this includes providing advice on the availability of advocacy. Further details about the service can be found at: http://www.cas.org.uk/patientadvice. NHS Boards have a responsibility to raise awareness of the support services available and should also seek to ensure PASS has information on the advocacy services available in their respective area and how these services can be accessed.

Stand By Me

When I was broken, on my knees,

silenced by the weight of living,

on the brink of giving up,

an advocate came by

and deftly opened up my voice

by listening, simply listening.

Soon the cage became a key,

the words ran free

and hope took root within me.

Together we unraveled all the knots,

sought clarity in breaking down the problem,

put the jigsaw back together in a workable solution.

Ready now to voice my vision

to the doctors and nurses looking after me,

I asked my advocate to stand beside me

as I still felt vulnerable and small,

faced with an impenetrable wall

of professional power.

We walked into the meeting, took our places.

I saw respect light up the faces of my gaolers

as I spoke the words, tentative at first,

then full of confidence, conviction

as they soon began to listen.

My advocate sat quietly by my side,

didn't have to interject

but for the blanks in memory

caused by the haze of medication.

We came to a solution

which I felt I could accept with grace.

I didn't get discharged as I had hoped for

but in the course of being listened to

my gaolers had become my carers

and the treatment plan became a contract

which empowered me.

By standing with me on the journey

my advocate had helped to set me free.

I left the ward soon after with my head held high

because the roots of confidence and hope

she planted in me now had grown into a tree.

(Jo McFarlane, AWOL, 2013)