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Advocacy for Mental Health and Dementia
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WHAT IS INDEPENDENT MENTAL HEALTH ADVOCACY?
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Independence
There should be no conflict of interests for the advocate. They must not be associated with any direct service
provision affecting the service users lives.
Empowerment
Advocates work with an individual rather than for them. An essential skill of an advocate is to be able to work in an empowering way. The process of advocacy is intended to be an empowering
experience for the service user whatever the outcome. As far as possible
every step of the negotiations is decided by the service user. Advocacy
exists on a continuum from protection to empowerment.
Non-Judgemental
The advocate must always see the
service user as a person first and foremost however ill they may be. They
must not allow any of their own opinions or cultural baggage influence the
nature or quality of the support they give.
Inclusive
Advocates will support anyone involved in mental health services
Confidential
Discussions between an advocate and a
service user are confidential. Consideration of breaching confidentiality
will only be made where there is serious risk of harm to the individual or
to another person. Wherever possible, discussions will take place with the
service user before anything is disclosed. In secure settings,
confidentiality can also be breached when there is a risk to the security of
the institution.
Free
Advocacy must be free to the service user.
It can empower a person to express their views and needs
and, in a sense, the empowering process of advocacy is as important as
achieving an outcome. Many people accessing advocacy feel that for the first
time since becoming involved in mental health services, they are accepted
for themselves, rather than as a person with a mental illness or a
particular diagnoses.
Mental Health Advocacy is available to people using mental health services,either hospital or community-based and for those wishing to access them or leave them.
For an advocate to be on someones side, the advocate
should be independent of the service system. An independent advocacy can be
clear that their loyalty and accountability is to the person who needs the
advocate. They can focus on representing the interests and wishes of the
people who need an advocate and be clear that this is their role. A person
working for a service providing organisation can not be independent the
potential for conflict of interest exists. They may look out for and speak
up for the person they are working with, but if they take up an issue
against the organisation, there is a conflict of interest. They may be seen
as acting unprofessionally or being critical of the employing organisation.
It is particularly important for an advocate working with
a person who is detained under the Mental Health Act to be conspicuously
independent. The user must know that the advocate is not connected in any
way with the organisation that authorised or brought about their detention.
Mental health advocacy happens every time someone speaks on behalf of another person or group who uses mental health services and every time someone supports another person or group to speak out for themselves. Mental health advocacy is about standing up for a person or a group, taking their side, supporting them to get their point across. It is about safeguarding individuals who are in situations where they are vulnerable.
Mental Health Advocacy Must Be:
Independent
Advocates cannot work for or be associated with any
organisation, services or people involved with or affecting the service
user's life. The advocate must be free to express the service user's views
without risk of compromise or conflict of interest. An advocate is
essentially responsible to the service user. This is a relationship that can
only exist on the basis of trust.
Empowering
An essential skill of an advocate is to work in an
empowering way. Advocates try to ensure that whatever the outcome of the
advocacy issue the process itself is an empowering experience for the
service user. As far as possible every step of negotiations to achieve the
desired outcome is decided by the service user e.g.. it is up to the service
user to decide whether to speak for themselves with support from the
advocate or for the advocate to speak on their behalf.
Non-judgemental and Unconditional
Advocates must not judge the service user. When a service
user is experiencing severe mental distress, an advocate may be the only
person s/he sees who is not responsible for assessing, treating and
monitoring their illness/condition. This means that advocates must listen to
and hear the service user's report as their truth and therefore valid.
Free
Advocacy services must be free to the service user and
cannot discriminate on grounds of wealth or poverty.
Inclusive
Advocacy should be available to anyone who is using
mental health services and to their carers
Confidential
The discussions between an advocate and a service user
are confidential. Consideration of breaching confidentiality will only be
made where there is serious risk of harm to the service user or to others.
Discussion with the service user will take place if possible before
confidentiality is breached. Where advocacy is delivered in a secure
setting, issues around breach of confidentiality arise when there is a risk
to the security of the institution.
Mental Health advocacy differs from advice-giving.
Advocates can provide information and explore options, enabling the
individual to make informed choices but they do not give advice.
Mental health advocacy is different from service user
involvement. Advocacy is about putting across the views of the user or users
as they define them and at the time they need to do it. User involvement
works to broader planning agendas in a more consultative framework.
Many organisations providing mental health services now
say that advocacy is part of their service, or that staff offer advocacy to
their users. It seems important that some of the issues around how and where
advocacy is delivered are clarified.
It is accepted in this report that mental health advocacy
is provided in many different settings. A housing support worker in a
voluntary organisation or a nurse on a hospital ward may provide advocacy.
However, there is a difference between this and the advocacy being discussed
in this report. In the first instance, this is not independent advocacy. In
addition, it seems more accurate to describe this work as a member of staff
using advocacy skills in their supportive relationship with a service user.
In the broader advocacy movement, and in this report, it
is necessary to be clear that the advocacy that is needed is a dedicated
advocacy service, where an advocate acts only as an advocate and not as a
support worker. Only when this advocacy is available in an independent
service, can an advocacy relationship be formed where the advocate can speak
up for the service user, or enable the service user to speak up for
themselves.
An advocate would, in general, work with service users on
specific issues and would end the contact when the work is complete. No time
limit should be set, as service users may have very complex issues they need
support with, or may have a series of issues concerning them. However,
advocates are not there to provide on-going support which is not dealing
with specific issues, nor should they substitute for work other mental
health workers should be providing.
National Service Framework for Mental Health
Specific arrangements should be in place to ensure advocacy is available.
Nationally, mental health advocacy developed as a result
of increasing concern about the quality of mental health services in post
war Britain. The 1983 Mental Health Act and Code of Practice brought greater
awareness of legal and human rights of patients and rights to proper
information and representation. In 1986 the first Patients Council was set
up in Nottingham and Survivors Speak Out (a national self advocacy network)
was established. By 1992 there were over 100 similar survivor groups. These
amalgamated to become the United Kingdom Advocacy Network (UKAN).
The government began to recognise the contribution that
advocates could make in ensuring that service users were able to take an
active part in the planning and delivery of their care (DOH ?1994 p54).
In Leeds, service users, voluntary sector organisations
and service providers realised the need for a reliable independent advocacy
service. Services began to develop in the 1990's with the introduction of
Mental Illness Specific Grant (MISG) and Joint Finance, which enabled Social
Services Departments and Health Authorities to fund independent advocacy
services. LMHAG, the first independent mental health advocacy service in
Leeds began in 1993, funded by MISG and Joint Finance to provide Citizen
Advocacy and Patients Councils with trained volunteers. One to one,
representational advocacy was provided by 2 full time equivalent workers in
the Health Advocacy Unit service based in LCC Equality and Rights
Department. Advocacy and interpreting for three local minority cultures was
provided by AIS.
More recently (1999?), advocacy for black and Asian
communities receiving secondary services has been provided by an advocate at
Leeds Black Mental health Resource Centre.
Six months after the closure of the Health Advocacy Unit
in 1998, LMHAG changed their service from volunteer advocacy to one to one
advocacy provided by the workers.
Advocacy for people with dementia is currently divided
between people over 65 and those in residential or nursing home care by
Leeds Age Concern. People with dementia of any age in hospital or in their
own homes was initially provided by an advocate at the Health Advocacy Unit.
This worker is now based at LMHAG.
All these groups, together with other advocacy
organisations in Leeds became part of Advocacy Network - Leeds some years
ago. The Network established a Definition of Advocacy and a Code of Conduct
that is endorsed by Leeds health Authority and Leeds Social Services. They
deliver regular accredited training sessions in advocacy to any voluntary
sector organisation in Leeds who wish to participate.
The Government, with its declared aim of social inclusion
and service user involvement in the development and delivery of services, is
recognising the value of independent advocacy. While plans are underway for
funding advocacy for children in care and people with learning disabilities,
their proposals for mental health advocacy have not yet been finalised.
National Service Framework for Mental Health states that
Health Authorities must have arrangements in place for (independent?)
advocacy* and it is in this context that this report is being written.
The Health and Social Care Act 2001 states:
It is the duty of the Secretary of State to arrange, to
such extent as he considers necessary to meet all reasonable requirements
for the provision of independent advocacy services. (S12)
The NSF Section on Configuration of mental health
services Specific arrangements should be in place to ensure advocacy
arrangements (sic). In reply to a recent Parliamentary Question, health
minister Jacqui Smith stated that whilst the government has no plans to
introduce a statutory right to advocacy for users of mental health services
not subject to compulsory powers, the NSF makes clear that mental health
service providers should ensure that specific arrangements are made for the
provision of advocacy services.
The white paper, "Reforming the Mental Health Act" (2000)
proposes for the first time a legal right to independent advocacy:
providers of health and social care services will be
required to ensure that patients who are subject to care and treatment under
compulsory powers have access to independent specialist advocacy services
Health Authorities will ensure suitable independent advocacy is made
available (5.11)
The role of specialist advocates will be to provide
information and, if appropriate, help the patient represent his or her views
in discussions with the clinical team about his or her care and treatment
under formal powers. (5,12)
In November 2001, the Government published: Involving
Patients and the Public in Healthcare. This outlines plans for 2 new bodies
PALS (Patients Advice and Liaison Service) and ICAS (Independent Complaints
Advocacy Services). The plans for both services refer to existing mental
health advocacy schemes:
ICAS will complement existing advocacy services and so
are not intended to replace, for example, current mental health advocacy
services. (3.14)
In Leeds, the development of PALS (including mental
health PALS to be set up this year) has included working closely with local
advocacy organisations, for example, all PALS workers will receive training
in the differences between PALS and independent advocacy.
The picture that is emerging on the interface between
PALS and independent advocacy services is that PALS workers may be able to
pick up issues directly concerning standards in service delivery that are
part of the work of currently practicing advocates. This would release
independent advocates to provide a wider service than is possible at
present.
It is intended that ICAS will provide independent support
for people who wish to complain. This is not dissimilar to the current role
of the Community Health Councils.
All the above legislation and reports acknowledge the value of independent mental health advocacy. However, it is still not absolutely clear what aspects of advocacy maybe established as a legal right and how the Government intends this to be funded.
At the time of writing, the government is due to publish
Guide to Best Practice in Independent Specialist Mental Health Advocacy in
England and Wales, the report commissioned from Durham University on the
principles and good practice in the provision of advocacy.
This report: Will inform the development of standards for
specialist advocacy services. (Reforming the MHA, 5.13)
Once published there will be a further period of
consultation. From the draft of this report (and we believe the government
intends to publish it in full) the emerging model is of a core service for
detained patients with additional elements (e.g.. for voluntary patients and
those receiving treatment in the community; minority cultures; CPA, forensic
etc) funded according to local need.
Reforming the Mental Health Act proposes that specialist
advocacy will be responsible to a new Commission for Mental Health who will
be responsible for training and practice standards and for monitoring and
reviewing the provision of advocacy to detained patients.
Respondents to the Durham University Report Strongly Agreed That:
Advocacy should be clearly defined and professionally
delivered by people who are provided with good training, management, support
and supervision.
The emerging idea is for an agreed, accredited,
standardised training programme that would be adopted by individual groups
and or local networks.
Advocacy Standards would cover access, record keeping,
policies and procedures, staffing, training, accountability, monitoring and
evaluation, feedback, Code of Practice as well as the Key Principles of:
1. Recent examples of service users requesting advocacy include:
A young woman who requested advocacy support at her
CPA, to change her medication, have regular support in the community and to
access psychotherapy after asking for it for 3 years without success. All
these were achieved.
An older woman who has experienced considerable
traumatic life events and has been placed on a ward where she had further
bad experiences in the past. She believes people on the ward and outside are
plotting against her. The advocate has successfully negotiated her moving to
another ward.
A man who is involved in complicated divorce
proceedings initiated by his wife. There is a great deal at stake for him
but as a result of his current state of mind he doesn't feel able to attend
court at all or other meetings without an advocate to support him. In court
his advocate attends with the status of next friend.
2. Service User Views on having an Independent Advocate:
In a recent survey of service user views on the effects
of advocacy interviewees were asked whether anything had changed for the
better as a result of having an advocate.
Responses included:
3. Better outcomes for people
Advocacy makes a difference to what happens to people. It
leads to decisions about treatment and services being tailored around the
individual. People feel better about themselves and their situation. They
are more likely to change a situation that they are not happy with. Recent
research in Australia (Rosenman 2000) suggests that with advocacy support,
people are likely to leave hospital earlier and are less likely to return to
hospital.
4. Empowerment
Empowerment is now widely acknowledged in health policy
as an essential contribution to improving the health of people who are
vulnerable and to the health of excluded communities. Advocacy empowers
people who are being ignored, giving people support and information to make
their own decisions and to take more control over their own lives.
5. User-Focused Services
Advocacy schemes in Leeds provide information and
feedback about how well services are meeting the needs of their users. This
can inform future need and priorities and can assist systems of clinical
governance within the Trust and best value in local authorities. Advocacy
schemes provide a challenge to service providers to improve what they do and
help focus service provision on the needs of service users.
[1 LMHAG: Independent Survey of Service User Views, published February 2002]