There is a new law that can help - The Mental Capacity Act 2005
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Making decisions
The Independent Mental Capacity
Advocate (IMCA) Service
Helping people who are unable to make some decisions for themselves
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The Independent Mental Capacity Advocate (IMCA) service
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Making decisions
The Independent Mental Capacity
Advocate (IMCA) service
Helping people who are unable to make
some decisions for themselves
This booklet provides information on the Independent Mental Capacity Advocate (IMCA) serv-
ice established by the Mental Capacity Act. It is not a statutory Code of Practice issued under
the Mental Capacity Act 2005 and is not a guide to how the law will apply to specific situations.
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This document has been produced by:
It was written by:
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The Independent Mental Capacity Advocate (IMCA) service
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Acknowledgements
The Mental Capacity Implementation Programme (MCIP) published
this booklet. MCIP is a joint government programme between the
Department of Health, the Department for Constitutional Affairs, the
Public Guardianship Office and the Welsh Assembly Government
that has been established to implement the organisation, process
and procedures to launch the Mental Capacity Act in 2007.
Sue Lee from Speaking Up wrote this booklet. We are grateful to
her and the rest of the team at Speaking Up.
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Contents
1 Introduction 6
2 Advocacy 7
What is advocacy? 7
Who needs advocacy? 7
What is an advocate? 8
Non-instructed advocacy 8
3 The IMCA service 11
Why have an IMCA service? 11
What is mental capacity? 12
Does a person lack capacity? 12
What does an IMCA do? 13
Who is the IMCA service for? 13
When does an IMCA not need to be instructed? 15
What is meant by ‘having nobody else who is willing and
able to be consulted’? 15
When will the IMCA service be available? 17
Who has a duty to instruct IMCAs? 17
Who is the ‘decision-maker’? 17
4 How the service works 18
Who should be referred to the IMCA service? 18
What is serious medical treatment? 18
What is meant by serious consequences? 19
IMCA and changes to accommodation 20
What are ‘long term accommodation’ moves? 21
Involving IMCAs in adult protection cases and care reviews 22
IMCA and adult protection procedures 22
IMCA and care reviews 23
The referral process 25
Limitations of the service 26
What if a person requiring an IMCA is receiving funding
from outside the area where they are currently living? 27
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5 How an IMCA works 28
Who can be an IMCA? 28
How do IMCAs work? 28
The main elements of IMCA work 30
Finding out the person’s wishes and feelings, values and beliefs 30
Finding and evaluating information 31
Considering alternative courses of action 32
Representing and supporting the person who lacks capacity 32
Getting a second medical opinion 33
Auditing the decision-making process 33
Communicating the IMCAs findings 33
How do IMCAs challenge a decision? 34
6 Complaints 35
What to do if you are not happy with the IMCA service 35
7 What if I want to know more? 36
5 Some useful contacts 37
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1. Introduction
IMCA stands for Independent Mental Capacity Advocate.
IMCA is a new type of statutory advocacy introduced by the Mental
Capacity Act 2005 (the Act). The Act gives some people who lack
capacity a right to receive support from an IMCA.
The service comes into effect in April 2007, in England and in
October 2007 in Wales. Local authorities (LAs) have commissioned
IMCA services in England and local health boards are
commissioning in Wales. Responsible bodies, the NHS and LAs,
both have a duty to make sure that IMCAs are available to represent
people who lack capacity to make specific decisions, so staff
affected will need to know when an IMCA must be involved
IMCA services are provided by organisations that are independent
from the NHS and local authorities.
The aim of this booklet is to explain:
what advocacy is
the role of an IMCA
how the IMCA service works in practice
who will benefit from the IMCA service
how to make a referral to the IMCA service.
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2. Advocacy
What is advocacy?
Advocacy is taking action to help people:
express their views and wishes
secure their rights
have their interests represented
access information and services
explore choices and options.
Advocacy promotes equality, social justice and social inclusion.
It can empower people to speak up for themselves.
Advocacy can help people become more aware of their own rights,
to exercise those rights and be involved in and influence decisions
that are being made about their future.
In some situations an advocate may need to represent another
person’s interests. This is called non-instructed advocacy and is
used when a person is unable to communicate their views.
Who needs advocacy?
Anyone who needs support to:
make changes and take control of their life
be valued and included in their community
be listened to and understood
A person accessing advocacy could, for example, be someone with
a learning difficulty or an older person who has dementia.
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What is an advocate?
An advocate is someone who supports a person so that their views
are heard and their rights are upheld.
They can help a person to put their views and feelings across when
decisions are being made about their life.
They can give support which will enable a person to make choices
and they inform people of their rights.
An advocate will support a person to speak up for themselves or, in
some situations, will speak on a person’s behalf.
Advocates are independent. They are not connected to the carers
or to the services which are involved in supporting the person.
An advocate will work one-to-one with a person to develop their
confidence wherever possible and will try to ensure that the person
feels as empowered as possible to take control of their own life.
Non-instructed advocacy
The majority of service users who will access the IMCA service
are likely to be people with learning disabilities, older people with
dementia, people who have an acquired brain injury or people with
mental health problems. But IMCAs may also act when people
have a temporary lack of capacity because they are unconscious
or barely conscious whether due to an accident, being under
anaesthetic or as a result of other conditions.
Many will have significant barriers to communication and will be
unable to instruct the advocate themselves. In addition, it is likely
that many people using the service will be unable to express a view
about the proposed decision.
A non instructed advocate will always attempt to get to know the
person’s preferred method of communication and will spend time
finding out if a person is able to express a view and how they
communicate. IMCAs will be experienced at working with people
who have difficulties with communication.
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If the person is unable to communicate their views and wishes
relating to the decision to be made, an advocate will use
non-instructed advocacy.
“Non-instructed advocacy is taking affirmative action with or
on behalf of a person who is unable to give a clear indication of
their views or wishes in a specific situation. The non-instructed
advocate seeks to uphold the person’s rights; ensure fair and equal
treatment and access to services; and make certain that decisions
are taken with due consideration for their unique preferences and
perspectives” Action for Advocacy 2006
The key principles of non-instructed advocacy are:
The client does not instruct the advocate.
The advocacy is independent and objective.
People who experience difficulties in communication have a
right to be represented in decisions that affect their lives.
The advocate protects the principles underpinning ordinary
living which assumes that every person has a right to a quality
life.
There are a number of approaches that an advocate may use
when undertaking non-instructed advocacy. The ‘Watching Brief’
approach was devised by ASIST, an advocacy organisation, and
can be used when the person is unable to communicate a view and
the advocate therefore cannot find out what the person might want.
It sets out a process whereby the advocate can ask how particular
aspects of a person’s life will be enhanced or detracted by the
proposed decision. It protects or argues for ordinary life principles
and works from the basis that every human being is entitled to have
a quality life. It sets out nine quality of life domains that are used as
a basis for the advocate to ask questions of whoever is proposing
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to make a decision. The advocate does not offer an opinion or
express a view on a particular course of action.
The strength of this approach lies in the fact that service providers
are required to think about why they are making the specific
decision and to justify the actions proposed. In other words asking
‘why?’ can be very powerful. An advocate actively probes the
process by which providers reach a decision.
An advocate will go to meetings on the person’s behalf and look at
any proposed decisions to make sure that:
All options have been considered
Where a person’s own preferences and dislikes can be
identified, that these are taken into account
No particular agendas are being pursued
The person’s civil, human and welfare rights are being
respected
Example
Emma, a 40-year-old woman who has high support needs, had
lived at home with her father until his sudden death. A decision
needed to be made about where Emma would live in the future
and a referral was made to the IMCA service. The IMCA met with
Emma’s social worker and was told that she does not have any
spoken language, that she is unable to sign and has very limited
methods of communication. The IMCA met Emma and found
that it was not possible to get a view from her about her future
accommodation. The IMCA then used non-instructed advocacy.
IMCA advocacy is not best interests’ advocacy. The advocate does
not offer their own opinion or make the decision.
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3. The IMCA service
Why have an IMCA service?
In the past, many people who lacked the capacity to make
decisions for themselves may not have been listened to. IMCAs
safeguard the rights of those with nobody else to speak for them.
The benefits of an IMCA service
The main benefits for the person who lacks capacity are:
having an independent person to review significant decisions
being made
having an advocate who is articulate and knowledgeable not
solely in relation to the Act but also about a person’s rights,
health and social care systems and community care law
receiving support from a person who is skilled at helping
people who have difficulties with communication to make
their views known
having an independent person who can support and
represent them when certain serious decisions are being
made and they have nobody else who can be consulted.
There are benefits also for decision-making bodies as
practitioners working in those bodies may find that:
the collaborative way in which IMCAs work will mean that
practitioners are assisted in their decision-making processes
by a person with a good knowledge of the Act
the information brought to the attention of the decision-maker
by the IMCA may be extremely useful and can often save
valuable time for the practitioner
complex decisions can be made with more confidence and in
many cases more quickly due to the involvement of an IMCA.
(Based on Evaluation of IMCA pilots by Cambridge University.)
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What is mental capacity?
Mental capacity is the ability to make a decision.
The Act covers situations where someone is unable to make a
decision because the way their mind or brain works is affected,
for instance by illness or disability. The lack of capacity may be
temporary because they are unconscious or barely conscious
whether due to an accident, being under anaesthetic or as a result
of other conditions such as the effects of drugs or alcohol. It
includes everyday decisions such as what to wear or when to take a
bath and more serious decisions such as where to live.
Does a person lack mental capacity?
The MCA requires ‘decision specific’ assessments of capacity.
All staff and all unpaid carers can and should make assessments of
capacity for simple decisions - such as can someone decide what
to wear or eat. Of course the more serious the decision, the more
formal the assessment of capacity should be.
Many staff can make assessments about whether to refer to an
IMCA using the following questions.
A person is assessed as lacking the ability to make a decision, and
needing an IMCA, if they cannot do one or more of the following:
Understand information given to them about the decision.
Retain the information for long enough to make the decision.
Use or weigh up the information as part of the decision making
process.
Communicate their decision (by any means, e.g. talking, sign
language or blinking).
The assessment must be specific to the decision which needs to
be made, for example, not a generic test of capacity. Whether and
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how such assessments are recorded may vary according to the
seriousness of the decision made. An IMCA should be instructed for
the specific decisions outlined below.
What does an IMCA do?
An IMCA safeguards the rights of people who:
are facing a decision about a long-term move or about serious
medical treatment
lack capacity to make a specified decision at the time it needs
to be made
have nobody else who is willing and able to represent them or
be consulted in the process of working out their best interests,
other than paid staff.
Regulations under the Mental Capacity Act give local authorities
and NHS bodies powers to involve IMCAs in other decisions
concerning:
a care review
adult protection procedures (even in situations where there may
be family or friends to consult).
IMCAs are independent and will generally work for advocacy
providers who are not part of a local authority or the NHS.
Who is the IMCA Service for?
The IMCA service is provided for any person, aged 16 years or
older, who has no one able to support and represent them, and who
lacks capacity to make a decision about either:
a long-term care move
serious medical treatment
adult protection procedures
a care review.
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Such a person will have a condition that is affecting their ability to
make decisions.
Many factors can affect a person’s capacity such as:
acquired brain injury
learning disability
mental Illness
dementia
effects of alcohol or drug misuse.
Capacity can also be affected by other illness, trauma or other
factors.
A person’s capacity may vary over time or may depend on the type
of decision that needs to be made.
IMCAs should be available to people who are in prison, in hostels,
and on the streets and who lack capacity to make decisions about
serious medical treatment or long-term accommodation.
Example
Alan, a 32-year-old man who has learning difficulties and autism,
lives in a care home which is due to close. Alan will need to move
to new accommodation.
Alan’s social worker is aware that he does not have any family
or friends to consult about the decision. She believes Alan lacks
capacity to understand the decision to be made and she contacts
the local IMCA service to make a referral.
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When does an IMCA not need to be instructed?
IMCAs do not need to be instructed if:
a person who now lacks capacity previously named a person
that should be consulted about decisions that affect them, and
that person is available and willing to help
the person who lacks capacity has appointed an attorney, either
under a Lasting Power of Attorney or an Enduring Power of
Attorney, and the attorney continues to manage the person’s
affairs
the Court of Protection has appointed a deputy, who continues
to act on the person’s behalf.
However, where a person has no family or friends to represent them,
but does have an attorney or deputy who has been appointed solely
to deal with their property and affairs, they should not be denied
access to an IMCA. The Government is seeking to amend the Act, at
the earliest opportunity, to make it clear that, in such circumstances,
an IMCA should always be appointed to represent the person’s views
when they lack the capacity to make decisions relating to serious
medical treatment or long-term accommodation moves.
What is meant by ‘having nobody else who is willing and able
to be consulted?’
The IMCA is a safeguard for those people who lack capacity, who
have no one else other than paid staff who ‘it would be appropriate
to consult’ (apart from adult protection cases where this criterion
does not apply). The safeguard is intended to apply to those people
who have no network of support, such as close family or friends,
who take an interest in their welfare.
Decision-makers in the NHS and local authorities will need to
determine if there are family or friends who are willing and able
to be consulted about the proposed decision. If it is not possible,
practical and appropriate to consult anyone, an IMCA should be
instructed.
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The person who lacks capacity may have friends or family but there
may be reasons why the decision-maker feels it is not practical or
appropriate to consult with them.
Examples of situations where it may be appropriate to instruct
an IMCA:
The family member or friend is not willing to be consulted
about the best interests decision.
The family member or friend is too ill or frail.
There are reasons which make it impractical to consult with
the family member or friend, for example, they live too far
away.
A family member or friend may refuse to be consulted.
There is abuse by the family member or friend.
Example
A decision needed to be made regarding future accommodation
for a man who has mental health problems who had remained as
a voluntary patient in a hospital for a number of years. He was
assessed to lack the capacity to make the particular decision
and the care manager was uncertain about his eligibility for
the IMCA service as his mother was named as next of kin. On
further investigation, she discovered that the man’s mother
was elderly, had mental health problems herself, was currently
unwell, and had not had any contact with her son for two years.
Consequently, she decided that there was nobody who was able
to support and represent the man and made a referral to the
IMCA service.
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If a person who lacks capacity already has an advocate, they may
still be entitled to an IMCA and the IMCA would consult with their
advocate.
When will the IMCA service be available?
The service will be available for 52 weeks of the year, in office
hours, excluding Public Holidays and weekends.
Who has a duty to instruct IMCAs?
Staff in the NHS or a local authority, for example, doctors, care
managers or social workers all have a duty, under the Mental
Capacity Act, to instruct an IMCA where the eligibility criteria are
met. This duty starts, in England, on 1st April 2007 and in Wales
on 1st October 2007.
Who is the ‘decision-maker’?
The decision-maker is the person who is proposing to take an
action in relation to the care or treatment of an adult who lacks
capacity, or who is contemplating making a decision on behalf of
that person. Who the decision maker is will depend on the person’s
circumstances and the type of decision. For example, the decision-
maker may be a care manager or a hospital consultant.
Staff working in statutory organisations, in the local authority or
NHS, who are involved in making best interests decisions should
know when a person has a right to IMCA and when they have a
duty to instruct an IMCA.
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4. How the service works
Who should be referred to the IMCA Service?
Any person who meets the following criteria must be referred to
the IMCA service.
Is a decision being made about serious medical treatment
or a change of accommodation; or a care review or adult
protection procedures? (There will be LA policy on care
reviews and adult protection)
Does the person lack capacity to make this particular
decision?
Is the person over 16 years old?
Is there nobody (other than paid staff providing care or
professionals) whom the decision-maker considers willing
and able to be consulted about the decision? (This does not
apply to adult protection cases.)
What is serious medical treatment?
NHS bodies must instruct and then take into account information
from an IMCA where decisions are proposed about ‘serious medical
treatment’ where the person lacks capacity to make the decision
and there are no family or friends who are willing and able to
support the person.
Serious medical treatment is that which involves:
giving new treatment
stopping treatment that has already started
withholding treatment that could be offered.
And where there is either:
a a fine balance between the benefits and the burdens and risks
of a single treatment
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b a choice of treatments which are finely balanced
c what is proposed would be likely to involve serious
consequences.
A person will have a right to an IMCA if such treatment is being
contemplated on their behalf and the person has been assessed as
lacking capacity to make the decision for themselves at that time.
An IMCA cannot be involved if the proposed treatment is for a
mental disorder and that treatment is authorised under Part IV of the
Mental Health Act 1983. However, if a person is being treated under
the Mental Health Act and the proposed treatment is for a physical
illness, for example, cancer, an IMCA can be involved.
Example
William, who was detained under Section 3 of the Mental Health
Act, became physically unwell and diagnostic tests revealed that
he had cancer. He was assessed to lack the capacity to make a
decision about the various options for treatment and had nobody
who could be consulted about the decision. Consequently a
referral was made to an IMCA.
What is meant by serious consequences?
Serious consequences refers to those which could have a serious
impact on the person. It could include treatments which:
cause serious and prolonged pain, distress or side-effects
have potentially major consequences for the patient(for
example, major surgery or stopping life-sustaining treatment)
have a serious impact on the patient’s future life choices
(for example interventions for ovarian cancer).
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Example
Peter was admitted to hospital having fallen at the nursing
home. He was in the late stages of dementia and although
clearly in pain was unable to tell the hospital staff where the
pain was. Investigations showed that his hip was broken and a
decision needed to be made about treatment, however he lacked
capacity to consent to or refuse medical treatment. An IMCA was
appointed.
The only situation in which the duty under the Act to instruct an
IMCA need not be followed is when an urgent decision is needed,
for example, to save a person’s life. However, if further serious
treatment follows an emergency situation, there will be a need to
instruct an IMCA.
Treatment which is regulated by Part 4 of the Mental Health Act
1983 (for patients who have been detained under the Mental Health
Act 1983) cannot be included in the definition of ‘serious medical
treatment’.
How do IMCAs work with serious medical treatment decisions?
The IMCA will:
check if the best interests principle has been followed
ensure the person’s wishes and feelings have been considered
seek a second medical opinion if necessary.
IMCA and changes to accommodation
The local authority or the NHS must instruct an IMCA where
decisions are proposed about a move to or change in
accommodation where the person lacks capacity to make the
decision and there are no family or friends who are willing and able
to support the person.
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The right to an IMCA applies to decisions about long-term
accommodation moves to or from a hospital or care home or a
move between such accommodation if:
it is provided or arranged by the NHS
it is provided under section 21 or 29 of the National Assistance
Act
it is part of the after-care services provided under section 117 of
the Mental Health Act 1983 - following a decision made under
section 47 of the National Health Service and Community Care
Act 1990.
Example
Bert, a man in his 80s, had a stroke whilst at home which had led
to a stay in hospital lasting many weeks and was now ready to be
discharged. Bert had always lived an independent life up until his
illness but now his condition was such that his social worker had
serious concerns about whether it would be in his best interests
to return to his former home. After an assessment of his capacity
to make the decision and enquiries about any family or friends
who may be consulted about the decision, the social worker
makes a referral to an IMCA.
What are ‘long-term accommodation’ moves?
This applies if an NHS organisation or local authority decides to
place a person who lacks capacity:
in a hospital – or move to another hospital - for a stay likely to
last longer than 28 days
in residential accommodation for a stay likely to last longer than
8 weeks.
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It applies to long-stay accommodation in a hospital or care
home, or a move between such accommodation. This may be
accommodation in a care home, nursing home, ordinary and
sheltered housing, housing association or other registered social
housing, or in private sector housing provided by a local authority or
in hostel accommodation.
If the placement or move is urgent, an IMCA need not be instructed,
but the decision-maker must involve an IMCA as soon as possible
after making an emergency decision if the person is likely to stay
in hospital longer than 28 days or longer than 8 weeks in other
accommodation.
There is no duty to involve an IMCA if the person is required to stay
in the accommodation is under the Mental Health Act 1983.
Involving IMCAs in adult protection cases and care reviews
When people meet the IMCA criteria, local authorities and the NHS
have a DUTY to instruct an IMCA for changes in accommodation
and serious medical treatment decisions. For care reviews and adult
protection procedures, local authorities and the NHS have POWERS
to appoint an IMCA where they consider that the appointment
would be of particular benefit to the person concerned. Local
authorities, in England, should have a policy on how IMCAs will
be involved in care reviews and adult protection procedures. NHS
bodies and local authorities in Wales will be similarly required to
have such a policy in place.
IMCA and adult protection procedures
Local authorities and the NHS have powers to instruct an IMCA to
support and represent a person who lacks capacity where:
it is alleged that the person is or has been abused or neglected
by another person
it is alleged that the person is abusing or has abused another
person.
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Local authorities and the NHS can only instruct an IMCA if they
propose to take, or have already taken, protective measures. This
is in accordance with adult protection procedures set up under
statutory guidance (Published guidance: for England - No secrets:
Guidance on developing and implementing multi-agency policies
and procedures to protect vulnerable adults from abuse
(www.dh.gov.uk ); for Wales - In safe hands (www.ssiacymru.org.uk).
In adult protection cases, access to IMCAs is not restricted to
people who have no one else to support or represent them. People
who lack capacity who do have family and friends are still entitled to
have an IMCA to support them in adult protection procedures. The
decision-maker must be satisfied that having an IMCA will benefit
the person.
Example
A young woman who has a learning disability lived at home with
her family. Her care manager had evidence and consequently
serious concerns that her needs were not being met and that she
was at serious risk of harm and neglect. The care manager made
a referral to the IMCA service and an IMCA was instructed to
support and represent the person throughout the adult protection
proceedings.
IMCA and care reviews
A responsible body can instruct an IMCA to support and represent
a person who lacks capacity when:
they have arranged accommodation for that person
they aim to review the arrangements (as part of a care plan or
otherwise)
there are no family or friends whom it would be appropriate to
consult.
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Reviews should relate to decisions about accommodation:
for someone who lacks capacity to make a decision about
accommodation
that will be provided for a continuous period of more than
12 weeks and were arranged by a LA/NHS
that are not the result of an obligation under the Mental Health
Act 1983
that do not relate to circumstances where sections 37 to 39
of the Act would apply.
Example
A man who is in his 70s and has dementia was placed in a care
home following a long stay in hospital. His care manager had
made a best interests decision which his family did not agree with
and they had requested that he leave the care home, indicating
that they may remove him. Due to serious concerns about the
man’s safety, an adult protection strategy meeting was held and
an IMCA instructed. Prior to attending the care review, the IMCA
met with the man who gave a clear indication that he was happy
and did not want to leave the care home. The IMCA was able
to communicate the man’s views and wishes at the care review
meeting.
Where the person is to be detained or required to live in
accommodation under the Mental Health Act 1983, an IMCA will not
be needed since the safeguards available under the Mental Health
Act will apply.
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The referral process
Staff working in local authorities or the NHS must be able to identify
when a person has a right to an IMCA and know how to instruct an
IMCA.
The first step is to know which organisation has been
commissioned to provide an IMCA service in the local authority,
or local health board, area where the person currently is. This
information can be found out from the local authority or from
information and advice centres such as the Patient Advice and
Liaison Service (PALS) or the Citizens’ Advice Bureau (CAB) in the
area or from Community Health Councils in Wales. The Department
of Health also has an IMCA website with the details of all the IMCA
providers.
Local arrangements will be in place with each IMCA service
provider regarding the ways in which referrals can be made. Initial
referrals may be made by phone or email.
At the time when the referral is made it must be evident that:
a person lacks the capacity to make the particular decision
the decision is either serious medical treatment; a change in
accommodation, a care review or an adult protection case
there is nobody who can appropriately support and represent
the person (does not apply to adult protection).
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The IMCA will:
establish the referred person’s preferred method of
communication
meet with the referred person and use a variety of methods,
as appropriate, to ascertain their views
consult with staff, professionals and anyone else who knows
the person well who are involved in delivering care, support,
and treatment
gather any relevant written documents and other information
attend meetings to represent the person raising issues and
questions as appropriate
present information to decision-maker verbally and via a
written report
remain involved until decision has been made and be aware
that the proposed action has been taken
audit the best interests decision making process
challenge the decision if necessary.
Limitations of the service
An IMCA cannot be involved if:
a person has capacity
the proposed serious medical treatment is authorised under the
Mental Health Act 1983 and is therefore for a mental disorder
rather than a physical condition
the proposed long-term change in accommodation is a
requirement under the Mental Health Act 1983
there is no identifiable decision about a long-term change in
accommodation or serious medical treatment or decisions
relating to a care review or adult protection procedures
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there is any other person (not in a paid capacity) who is willing
and able to support and represent appropriately the person who
lacks capacity
decisions are being made in relation to a person’s finances
unless there are adult protection procedures in which an IMCA
is involved.
The IMCA will stop being involved in a case once the decision
has been finalised and they are aware that the proposed action
has been carried out. They will not be able to provide on-going
advocacy support to the person. If it is felt that a person needs
advocacy support after the IMCA has withdrawn, it may be
necessary to make a referral to a local advocacy organisation.
What if a person requiring an IMCA is receiving funding from
outside the area where they are currently living?
Each IMCA service will cover a local authority, or local health board,
area and all eligible people in that area, whether on a permanent
or temporary basis must be referred to the local IMCA service. For
example, if a person is living in a care home in Cambridgeshire but
Essex County Council are providing the funding for that placement
and there is a need to refer the person to IMCA, the Cambridgeshire
IMCA service will provide the service.
Example
A man who has a learning disability and autism receives funding
from the county where he originally lived as a child to live in
a care home in a different area. The care home is closing and
different accommodation needs to be identified. A care manager
from the funding authority is involved and knows that the IMCA
service provided in the area where the man currently lives, is the
right service.
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5. How an IMCA works
Who can be an IMCA?
Individual IMCAs must:
have specific experience (related to working with people who
need support with making decisions, advocacy experience and
experience of health and social care systems)
have IMCA training
have integrity and a good character, and
be able to act independently.
All IMCAs must complete the IMCA training in order to work as an
independent mental capacity advocate and have enhanced checks
with the Criminal Records Bureau (CRB) that show no areas of
concern.
IMCAs must be independent and cannot act as an IMCA if they are
involved in the care or treatment of the person or if they have links
to the responsible body instructing them or to anyone else involved
in the person’s care or treatment, other than as their advocate.
How do IMCAs work?
The IMCAs role is to support and represent the person who lacks
capacity and to audit the way the decision is being made. IMCAs do
not make the decision on behalf of the person they are representing;
the final decision will always be made by the decision-maker.
The IMCA will:
be independent of the person making the decision
provide support for the person who lacks capacity
represent the person without capacity in any discussions on the
proposed decision
provide information to help work out what is in the person’s
best interests
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raise questions or challenge decisions which appear not to be
in the best interests of the person.
The IMCA service will build on good practice in the independent
advocacy sector. But IMCAs have a different role from many other
advocates. Unlike some other advocates, they have rights and
duties under the Mental Capacity Act to:
provide statutory advocacy
support and represent people who lack capacity to make
decisions on specific issues
meet in private the person they are supporting
access relevant health and social care records
provide support and representation specifically while the
decision is being made
act quickly so their final report can form part of the decision-
making process.
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The main elements of IMCA work
There are four main elements to the IMCA work which can
broadly be summarised as:
1 Ascertaining the views, feelings, wishes, beliefs and values
of the person using whichever communication method is
preferred by the client and ensuring that those views are
communicated to, and considered by, the decision-maker.
2 Non-instructed advocacy. Asking questions on behalf of the
person and representing them. Making sure that the person’s
rights are upheld and that they are kept involved and at the
centre of the decision-making process.
3 Investigating the circumstances. Gathering and evaluating
information from relevant professionals and people who
know the person well. Carrying out any necessary research
pertaining to the decision.
4 Auditing the decision-making process. Checking that the
decision-maker is acting in accordance with the Act and that
the decision is in the person’s best interests. Challenging the
decision if necessary.
Finding out the person’s wishes and feelings, values
and beliefs
An IMCA will try to find out what the person’s wishes, feelings,
values and beliefs might be. They will find out what method of
communication the person prefers to use and will be experienced
at communicating with people who have difficulties with
communication. The person may use sign language, such as
Makaton or BSL or need information to be presented using pictures
or photographs. An IMCA will also talk to staff or anyone who
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knows the person well and will examine copies of relevant health
and social care records or written statements made by the person
when they still had the capacity to do so.
Where possible, decision-makers should make decisions based
on a full understanding of a person’s past and present wishes.
An IMCA should provide the decision-maker with as much of this
information as possible - and anything else they think is relevant.
Example
A young woman who has learning difficulties lived in short
break accommodation after leaving the family home and now
permanent accommodation needed to be found. She was
able to communicate very clearly to the IMCA what kind of
accommodation she would prefer, expressing a wish to have a
quiet environment and a garden. The IMCA was able to support
the person to put forward her views to the people who would be
making the decision.
Finding and evaluating information
IMCAs have a right to:
meet the person who lacks capacity in private
examine and take copies of, any records which the person
holding the record thinks is relevant to making the best interests
decision.
The IMCA may also talk to other people who know the person who
lacks capacity well or are involved in their care or treatment who
may have information relevant to the decision. In investigating the
person’s circumstances, the IMCA will be able to gather together
information to give to the decision-maker.
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In most cases, a decision by the decision maker on the person’s
best interests will be made through discussion involving all the
relevant people who are providing care or treatment, as well as
involving the IMCA.
Considering alternative courses of action
The IMCA will need to check whether the decision-maker has
considered all possible options and that the proposed option is,
according to the Mental Capacity Act, the least restrictive of the
person’s future choices or would allow him or her the most freedom.
The IMCA may suggest alternatives where there is evidence that
these are more consistent with the wishes and feelings of the person.
Representing and supporting the person who lacks capacity
The IMCA should find out if the person has been given the
appropriate support to enable the person to be as involved as
possible in the decision-making process.
They will attend meetings to represent the person and will use
non-directed advocacy approaches to ask questions about the
proposed decision. The IMCA will make sure that the views,
feelings, values, wishes of the person and any other relevant
information such as religious and cultural factors are made known
to the decision-maker.
Example
An IMCA is appointed for a serious medical treatment decision.
Whilst carrying out their investigations, the IMCA discovers that
the person is a practising Jehovah’s Witness and realises that this
is a significant factor to be brought to the attention of the person
proposing the treatment.
Sometimes an IMCA might not be able to get a good picture of
what the person might want. They should still try to make sure the
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decision-maker considers all relevant information by:
raising relevant issues and questions
providing additional, relevant information to help the final
decision.
Getting a second medical opinion
The IMCA has a right to seek a second medical opinion on behalf of
a person who lacks capacity when a decision is being made about
serious medical treatment. This puts the person who lacks capacity
in the same position as a person who has capacity who has a right
to request a second medical opinion.
Auditing the decision-making process
Throughout the decision-making process the IMCA will be ensuring
that:
the principles of the Act are being followed
the person is being supported to participate in the decision-
making process as fully as possible
the person is at the centre of the process
the best interests check list as set out in section 4 of the Act is
being followed
the decision-maker is giving clear, objective reasons for making
a particular decision about what is in the person’s best interests
anyone making a decision in the best interests of a person
who lacks capacity is not making that decision based on
assumptions which cannot be justified.
Communicating the IMCAs findings
An important part of the IMCAs role is to communicate their
findings and often there will need be a continual dialogue between
the IMCA and the decision-maker.
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The IMCA will submit a report to the decision-maker which gives
details of their investigations, providing as much relevant information
as possible. The report may include questions about the proposed
action or may include suggested alternatives if there is evidence that
these might be better suited to the person’s wishes and feelings.
The decision-maker must take into account the information from the
IMCA when working out what decision is in the best interests of the
person who lacks capacity.
There may sometimes be situations where an IMCA thinks that the
decision-maker has not paid enough attention to their report and
to relevant information and has concerns about the decision made.
They may then need to challenge the decision.
How do IMCAs challenge a decision?
The IMCA may initially use informal methods and may ask for a
meeting with the decision-maker to explain any concerns and
request a review of the decision. Where there are serious concerns
about the decision made, an IMCA may decide to use formal
methods to challenge the decision.
Examples of formal methods are:
use the relevant complaints procedure
refer to the Independent Complaints Advocacy Service (ICAS)
consult the Patient Advice and Liaison Service (PALS) in
England or Community Health Councils in Wales
refer case to the Court of Protection
approach the Official Solicitor.
In particularly serious or urgent cases, the IMCA may approach the
Official Solicitor or seek permission to refer a case to the Court of
Protection for a decision. If an IMCA wants to challenge the way in
which a particularly serious decision has been made they can with
legal advice, consider applying for a judicial review.
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6. Complaints
What to do if you are not happy with the IMCA service
In the first instance the person who is unhappy about the service
should approach the IMCA providing the service or their manager.
If matters are not resolved, the IMCA provider’s complaint policy
should be used. If after this there are still concerns, the person
may want to approach the local authority,( or local health board in
Wales), that is responsible for commissioning the particular service.
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7. What if I want to know more?
Title Available from
Further information on the
IMCA service
www.dh.gov.uk/imca
email: imca@dh.gsi.gov.uk
Information on the Mental
Capacity Act 2005
www.dca.gov.uk/legal-policy/mental-
capacity/index.htm
T 0845 330 2900
E makingdecisions@dca.gsi.gov.uk
Other information booklets
like this one
You can view these electronically by
going to: www.dca.gov.uk/legal-policy/
mental-capacity/publications.htm
To order hard copies you can email:
reorder@inprintlitho.com
The Mental Capacity Act
2005
You can view this for free by going to:
www.dca.gov.uk/legal-policy/mental-
capacity/index.htm
You can order a hard copy from TSO
by calling 0870 600 5522 or emailing
customerservices@tso.co.uk.
The Code of Practice for the
Mental Capacity Act
You can download this for free by
going to:
www.dca.gov.uk/legal-policy/mental-
capacity/index.htm
You can order a hard copy from TSO
by calling 0870 600 5522 or emailing
customerservices@tso.co.uk
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8. Some useful contacts
The following government departments are working together to
implement the Mental Capacity Act in 2007
Department What it is/does Contact
Department for
Constitutional
Affairs (DCA)
Responsibilities include
running the courts, and
improving the justice system,
human rights, information
rights law, policy on running
elections and modernising the
constitution
5th Floor Steel House, 11 Tothill St,
London, SW1H 9LH
www.dca.gov.uk/
E makingdecisions@dca.gsi.gov.uk
Department of
Health (DH)
Responsibilities include setting
health and social care policy
in England. The Department’s
work sets standards and
drives modernisation across all
areas of the NHS, social care
and public health
Wellington House, 133-155
Waterloo Road, London, SE1 3UG
www.dh.gov.uk
T 020 7210 4850
Public
Guardianship
Office (PGO)
The administrative arm of
the Court of Protection and
part of the Department for
Constitutional Affairs. It
provides financial protection
services for clients who are not
able to manage their financial
affairs because they lack
capacity
Archway Tower, 2 Junction Road,
London, N19 5SZ
www.guardianship.gov.uk
T 0845 330 2900
E custserv@guardianship.gsi.gov.uk
Welsh Assembly
Government
Develops policy and approves
legislation that reflects the
needs of the people of Wales
Cathays Park, Cardiff, CF10 3NQ
www.wales.gov.uk
T 029 2082 5111
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The following organisations provide information about advocacy and/or
provide advocacy services
Organisation What it is/does Contact
Action for
Advocacy
A resource and support
agency for the advocacy
sector, information, training
and advice
PO Box 31856, Lorrimore Square,
London, SE17 3XR
www.actionforadvocacy.org
British institute
of Learning
Difficulties
Works with the government
and other organisations to
improve the lives of people
in the UK with a learning
disability. They train staff,
family carers and people with
a learning disability. Also
funds Speak Out, a project
that provides advocacy for
adults with learning disabilities
Campion House, Green Street,
Kidderminster, Worcestershire,
DY19 1JL
T 01562 723 010
www.bild.org.uk
Speaking Up
Provides advocacy services
for people who experience
learning difficulties, mental ill
health and other disabilities.
They also run training
courses and events with
other organisations who want
to understand, consult and
involve disabled people
1a Fortescue Road, Cambridge,
CB4 2JS
T 01223 566258
F 01223 516638
E info@speakingup.org
www.speakingup.org
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Notes
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Other booklets in this series include:
1 Making decisions about your health, welfare or finance.
Who decides when you can’t?
2 Making decisions. A guide for family, friends and other
unpaid carers
3 Making decisions. A guide for people who work in health
and social care
4 Making decisions. A guide for advice workers
5 Making decisions. An Easy Read guide
These booklets are available in other formats on request.
To order:
T 023 80 878038 or 023 80 878036
F 023 80 528324
E reorder@inprintlitho.com
The booklets are also available online at:
www.dca.gov.uk/legal-policy/mental-capacity/publications.htm
The Mental Capacity Implementation Programme published
this booklet. It was written by Sue Lee at Speaking Up.
© Crown copyright 2007
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