4.Memorandum from the Making Decisions
Alliance (MIB 950)
1. SUMMARY MDA
1.1 The Making Decisions Alliance (MDA)
is a consortium of 28 organisations and groups working with people
who may have difficulty making or communicating decisions (see
Annex 6.1, for our full membership). Our two main aims are:
To lobby the Government to introduce
mental capacity legislation in the Queen's Speech 2003.
To increase awareness of the need
for new legislation.
1.2 The MDA is delighted that the Government
has published a Mental Incapacity Bill for consultation. After
14 years of Government consultation and the publication of four
reports and a draft Bill from the Law Commission, we are very
pleased that there are now definite plans to develop a legal framework
for decision-making for people who may have difficulties making
decisions for themselves. For too long, this has been a fundamental
gap in the law.
1.3 The MDA believes that the current law
does not provide sufficient protection for those who lack capacity
or those who look after them. Currently, the law is confusing
and fragmented. The range of people who are let down by the current
law is considerable. They include adults with severe learning
disabilities, people with autism, people with mental health problems,
victims of accident, people who develop brain damage and those
who lose mental capacity later in life, including those with dementia.
1.4 The current law is also unclear about
the legal rights and obligations of an individual who cares for
a person who lacks the capacity to make decisions for themselves.
Carers are uncertain about what decisions they can and cannot
legislation would give clarity to carers on what they can legally
do for the people they look after. Legislation would give carers
the legal basis to make informal day-to-day decisions on behalf
of someone who lacks capacity provided they exercise their authority
in the best interests of that person. Professionals will also
be clearer about how to represent the interests of people who
lack capacity with whom they are working.
1.5 The current law gives a number of different
answers to defining mental capacity. There is no statutory definition
of mental capacity. It may not be clear whether an individual
lacks capacity in relation to a particular decision. New legislation
would ensure that the variety of different tests would be replaced
with a single, straightforward statutory definition. This would
introduce certainty and clarity. A definition of capacity would
relate to a particular decision and would rest on an ability to
understand the information relevant to that decision. Legislation
should also give people greater rights to have a say in their
own lives and to make their own decisions, unless they have been
independently assessed as unable to do so.
1.6 The MDA believes that procedures are
needed to resolve disputes and difficulties. There is currently
no legal mechanism for resolving problems about personal care
and welfare. A person who has diminished or fluctuating capacity
may not be able to choose a person to make decisions on their
behalf. These issues would be addressed in new legislationfor
instance, the new Court of Protection would have the power to
make decisions about the care or welfare of a person who lacks
the capacity. The judicial option would be available where disputes
arose and would provide an easy means of appeal if disagreements
cannot be resolved.
1.7 The MDA Principles for Reform
People should be treated as individuals
and their right to make their own decisions should always be respected.
The law should assume that people are capable of making decisions
unless the contrary is proved.
Capacity should be determined in
relation to a particular decision at the material time and should
avoid generalisations that may unnecessarily restrict a person's
right to make their own decisions.
People who have difficulty making
decisions should be supported to make their own decisions rather
than having decision-making taken out of their hands.
Where someone needs support to make
a decision or a decision is being made on their behalf, they should
have the right to the support of an advocate to help them make
the decision and to ensure that they have a say in the decision-making
1.8 Although the first three principles
are enshrined in the preliminary clauses (2-4), the MDA does not
feel that the Bill currently contains sufficient mechanisms to
ensure that these principles are implemented in practice. This
is why we are continuing to press for the inclusion of advocacy
and advance statements on the face of the Bill and for additional
safeguards in relation to the General Authority (see Sections
5b: pp 20-24; 5a: pp 18-19; and 4.5: pp 8-12 respectively, for
2. SUMMARY OF
MDA KEY RECOMMENDATIONS
Name of the Bill should be amended
to the Mental Capacity Bill to reflect the presumption of capacity
enshrined in the Bill.
Presumption of capacity should be
moved from clause 3 to clause 1 to reflect and promote its fundamental
2.2 General Authority
General Authority should be explicitly
subject to the presumption of capacity.
Clause 6, subsection (1)"or
person reasonably believes that P lacks" to be deleted.
Consent in medical treatment to be
removed from the remit of the General Authority.
Significant decisions removed from
the remit of the General Authority, unless justified by immediate
The General Authority should not
be assumed but should instead be triggered, for instance a case
conference involving all those concerned with a person's care.
The continuing need to act under
the General Authority should be reviewed as part of a person's
Throughout the Bill, restrain should
always be justified only if risk of serious harm is immediate
(for example clause 7 (General Authority), clause 10 (LPAs)).
The Bill should create a duty on
local authorities to intervene in cases of suspected abuse, including
abuse of the General Authority.
2.5 Lasting Powers of Attorney (LPAs)
Clarity on the parameters for LPAs
is needed, comparable to that given on the powers of Deputies
in clauses 17 and 18.
LPAs must be established within a
clear hierarchy of decisions, in which they should "trump"
other powers with the exception of Advance Directives and decisions
of the Court of Protection.
Deputies should be made subject to
2.7 Court of Protection
Court of Protection should be required
to investigate potential conflicts of interest on appointment
of Deputies and on the activation of LPAs.
The Court of Protection should be
made accessible to adults with impaired capacity.
Legal aid and other financial assistance
should be given to all such adults to support applications to
There should be a legal right to
access independent advocacy when formal powers are applied for,
and a subsequent duty on the Secretary of State to provide sufficient
advocacy services to deliver this.
Advocacy support should be available
if required when significant or life-changing decisions are contemplated
under any of the powers established in the Bill.
Individuals without other formal
or informal networks of support should be prioritised for advocacy
2.9 Other significant omissions
Appointeeship system to be regulated
under the Mental Incapacity Bill, with appointees subject to the
same list of duties as other substitute decision-makers.
Advance statements to have superior
status to other expressions of "wishes and feelings".
Assessment should defined within
3. MDA RESPONSE
3.1 Was the consultation process preceding
the publication of the draft Bill adequate and effective?
Yes. As noted above, the proposals set
out in the Bill have been the subject of extensive consultation
for 14 years. However, the MDA has a particular concern relating
to the General Authority (clauses 6 and 7), which during the consultation
process was presented as a mechanism for carers to take day-to-day
decisions on behalf of a person who lacks capacity. The General
Authority as presented in the Bill is far broader and the MDA
has several suggestions as to additional safeguards to protect
the rights of people with impaired capacity from abuse under the
General Authority. See pages 8-12 of this response for the MDA
commentary on the General Authority.
3.2 Are the objectives of the draft Bill clear
In parts. The draft Bill is clearly intended
to put in place a legal framework to allow decisions to be taken
for people who lack capacity. Only in clause 2, subsection (3)
does the Bill refer to the need for supported decision-making.
The MDA is concerned that the emphasis of the draft Bill is about
making decisions on behalf of people who lack capacity rather
than maximising decision-making abilities as set out in clause
3 of the Bill. This misplaced emphasis is reflected in the current
title, which the MDA wishes to see changed to the Mental Capacity
Bill to reflect and reinforce the presumption of capacity.
3.3 Does the draft Bill meet these objectives
In parts. In general terms, the mechanisms
set out by the Bill meet the objective of allowing people to plan
for future incapacitythe major exception to this being
the omission of advance statements. The objective of giving carers
the right to have a say in decisions made about a person they
care for is also met effectively (clause 4). The General Authority
and the various formal mechanisms will allow carers and care workers
to operate within a comprehensive legal framework. However, our
major concern lies with people born with impaired capacity and
those who lose capacity without making provisions for this. We
feel that this group will not in practice be fully empowered by
the Bill to be involved in decisions taken about them or to maximise
their ability to make their own decisions.
3.4 Might lessons be learned from similar
legislation already implemented in Scotland or elsewhere?
Yes. Section 1, clause 2 from the Adults
with Incapacity (Scotland) Act 2000 would strengthen the protection
for adults with impaired capacity in the initial clauses of the
"There shall be no intervention in the affairs
of an adult unless the person responsible for authorising or affecting
the intervention is satisfied that the intervention will benefit
the adult and that such benefit cannot reasonably be achieved
without the intervention". Please see Annex 6.3: pp 36-39,
for a detailed MDA commentary on similar legislation in other
3.5 Are there relevant issues not covered
by the draft Bill which it should have addressed?
The MDA believes that the following issues should
have been addressed by the Bill:
Advance Statementssee Section
5a: pp 18-19.
Advocacysee Section 5b: pp
Appointeeshipsee Section 5c:
Assessmentsee Section 5d:
Public Law Protection for Those at
Risksee Section 5e: p30.
3.6 In what other ways might the draft Bill
The MDA key recommendations for additions and
amendments to the Bill are given are summarised in Section 2:
pp 3-4. All recommendations are in bold in the text that follows.
4. MDA COMMENTARY
Clauses 1-5Key Principles
4.1 Approach to Capacity
The MDA supports the Government's proposals
to create a more coherent approach to mental capacity and is supportive
of the new test of capacity, the presumption against lack of capacity
and the need for the minimal intervention in people's lives.
4.1.1 A functional approach to capacity
will mean that incapacity will be considered in relation to a
particular decision or set of decisions, rather than based on
a diagnosis of an individual's condition. It is also necessary
to take account of the particular needs and values of people from
different minority ethnic communities or faith groups.
4.1.2 The Bill should state that religious
and cultural factors should be taken into account when making
decisions on capacity to consent. Capacity is seldom entirely
present or entirely absent. The MDA believes that the intention
behind legislation should be to maximise each individual's capacity
for decision-making. The emphasis should be on how decisions are
made, how the consequences are communicated and how the facts
can be broken down to aid decision-making.
4.1.3 Given that the emphasis in the Bill
should be on maximising decision-making, the MDA recommends that
the presumption against lack of capacity should be set out in
clause 1 of the Bill. The Bill should also be named the Mental
Capacity rather than the Mental Incapacity Bill.
4.2 Definition of Capacity
The definition of capacity in the draft Mental
Incapacity Bill drops the diagnostic threshold that was set out
in the Law Commission's definition of capacity, namely a "disability
or disorder of the mind or brain . . . which results in the disturbance
of mental functioning". The MDA supports this approach. This
is because we had reservations about the potential for this new
legislation to adopt the definitions set out in the Mental Health
Act, particular because "mental disorder" might wrongly
be equated with the criteria for compulsion. In addition, it would
risk stigmatising or prejudicing people who need support with
decision-making. Organisations representing people with a learning
disability and older people felt that the term mental disorder
would be misleading and not adequately describe their client group.
Removing the diagnostic criteria will also mean that all the conditions
that result in incapacity would be included within the new definition
and ensure that a person will not need to have a prior diagnosis
in order to have impaired capacity.
4.3 Inability to make decisions
We are concerned that by not expressly stating
that clause 2 relates to the "material time" the decision
is to be made, the functional approach to capacity is watered
down. We therefore think that clause 2 should include the term
"at the material time". This would reinforce the functional
approach to defining capacity and that the approach is decision-specific.
It will also emphasise that giving and obtaining consent is a
process and not a one-off event.
4.3.1 Clause 2, subsection (1)(d) envisages
that there will be cases in which a person cannot communicate
any decision. The clause implies that all forms of communication
should first be considered, including sign language or any other
means. We agree with this approach but we think the Bill must
make supporting communication an explicit requirement. This is
because an apparent lack of capacity may be, in fact, the result
of communication difficulties rather than incapacity. Therefore,
the MDA wants legislation to place an express duty on assessors
to support a person to communicate their decision before a finding
of incapacity is made. Mental capacity legislation should create
an obligation on assessors to provide more information in order
to empower people to make decisions that they are capable of making.
Indeed, provision of information is central to the consent process.
People should not be disadvantaged by lack of information or support
to make their own decisions or indeed a shortage in resources
that prevents this information from otherwise being made available.
The parameters around the meaning of "all practical steps"
to support decision-making (clause 2, subsection 3) will need
to be clearly established.
4.3.2 Health and social care professionals
often need help from those in day-to-day contact with the person
who can identify and sometimes meet their communication needs.
In some cases, specialist staff such as speech therapists may
need to be brought in to assist with verbal and non-verbal forms
of communication. If at all possible, the person should be assisted
to make and communicate their own decision by providing information
in non-verbal ways if appropriate. In addition to clause 2, subsection
(1)(d), the MDA believes that clause 2, subsection (3) should
state that "a person should not be treated as unable to make
a decision or unable to communicate his decision unless all practical
steps to help him to do so and to assist and support communication
have been taken without success". Moreover, it should build
on the Law Commission's wording which states that "a person
should not be regarded as unable to understand information if
he is able to understand a simple explanation of that information
in broad terms and in simple language".
4.3.3 The proposed Code of Practice on assessing
capacity should promote a person-centred approach to decision-making,
which considers how a person communicates, how a decision is made
and how can the consequences best be communicated to that individual.
It should also consider how a person could be involved where some
of the decision-making needs to be done by others. This Code of
Practice should also provide guidance on methods of assessment
and how different forms of communication, including use of simple
language, pictures, audiotape and communication aids, local advocacy
support and advance statements, can help decision-making. In other
cases, new technology can be used to make the decision and its
consequences more visible. The Police Service Guide to Vulnerable
Witnesses provides a good example of a person-centred approach
to communication with people with learning disabilities.
4.3.4 The MDA supports the recommendation
that a decision should not be regarded as invalid because it appears
to be an unwise or irrational decision. We remain concerned that
it might provoke a more detailed examination of whether an individual
has the capacity to make a decision. Many people make unwise decisions
but that should not make those decisions invalid.
4.4 Best interests
The MDA supports the best interests criteria
set out in clause 4. The most important factor is the ascertainable
past and present wishes and feelings of the person concerned;
and the need to permit and encourage the individual to participate
as fully as possible in anything done, or any decision, affecting
him or her. We support the decision to extend the factors proposed
by the Law Commission, to include consideration of whether there
is a reasonable expectation of the person recovering capacity
to make the decision in the foreseeable future. The MDA understands
that it may not be practicable to consult with all family carers,
particularly in cases of distant relatives who have not been involved
in decision-making, as this may not be regarded as reasonable
(clause 4, subsection (d)). However, there should be an expectation
on professionals to make proper enquiries to identify all interested
parties. Moreover, we are concerned that the views of others may
not need to be sought if it is not "appropriate" to
consult them (clause 4, subsection (d)). This may lead to subjective
judgements about the appropriateness of a carer to represent a
person's views or to challenge the decision of professionals.
4.4.1 We are very concerned about the wording
in clause 4, subsection (3)(b) which states that the duty extends
to circumstances in which it is "reasonably believed"
that someone lacks capacity. This would allow some people, presumably
acting under a General Authority to act, to impose their own views
of what is likely to be in the incapacitated person's best interests,
rather than effectively applying the best interest criteria, or
to impose their views without first taking all practical steps
to enable a person to make their own decision.
4.4.2 In relation to decisions made on behalf
of a person without capacity, we support the Law Society's recommendation
that decisions must be made in their "best personal interests".
This emphasis would stress that priority should be given to identifying
those issues most relevant to the individual, rather than to the
decision-maker or other people. Without such emphasis there is
a risk that the individual's own best interests will not in fact
be the paramount consideration.
4.5 Clauses 6-7The General Authority
The General Authority will give protection to
much informal substitute decision-making that currently takes
place outside any formal legal framework. This will give a legal
context for all day-to-day decisions that are made, such as paying
bills and giving medication. In this sense, it codifies the existing
legal situation as established in case law.
4.5.1 The MDA acknowledges the need in certain
situations to empower carers to take effective decisions on behalf
of people with impaired capacity. The General Authority serves
this purpose well, and the restrictions set out in clause 7 should
prevent the worst abuses of its powers. However, the MDA is concerned
that in circumstances where the interests of carers and those
they care for are not aligned, the General Authority still offers
too little protection for the rights of people who may have difficulty
making or communicating decisions.
4.5.2 In these circumstances, the General
Authority may tend to undermine the presumption of capacity. With
no counterbalance or system of protection for people who may lose
the ability to make their own decisions under the General Authority,
this may in practice lead to a presumption of incapacity. To prevent
this, the MDA believes that the General Authority should not be
assumed but should instead be triggered, for instance at a case
conference involving all those concerned with a person's care.
At this point, all the principles of the Bill set out in clauses
2-4, not least the presumption of capacity and the need to take
all practicable steps to support decision-making, should be applied.
The decision that the General Authority may be applied to the
individual in question should be recorded; and all those using
the General Authority should be able to justify its use, if challenged
4.5.3 The continuing need to act under the
General Authority should also be reviewed as part of a person's
care programme. By this means, decision-making mechanisms would
be integrated into a person's overall care plan (through the care
programme approach, person-centred planning or single assessment
process as relevant), reducing the need for additional bureaucratic
processes. However, it is important to note that adults with impaired
capacity who are not in contact with services will not be able
to benefit from this safeguard.
4.5.4 As it stands, the General Authority
will enable people to make decisions for others if the person
reasonably believes that the other person, P, lacks capacity.
We agree that the General Authority should be subject to best
interests (clause 6, subsection (6)) but this assumes that a person
lacks capacity and that a decision needs to be taken in their
best interests. The MDA argues that the General Authority to act
should also expressly state that it is subject to clause 3, the
presumption against lack of capacity as well as the best interest
criteria in clause 4.
4.5.5 The Bill should also strengthen the
expectation on carers and care workers to take all practical steps
to support people to make decisions that they are capable of making,
before taking decisions on their behalf. The starting point for
carers and care workers should be on maximising decision-making
and supported decision-making rather than making a substitute
decision under a General Authority. In line with our comments
in relation to the "best interest" criteria, the current
wording, "reasonable belief", runs the risk of allowing
the person acting under a General Authority to circumvent the
requirement to assess capacity before making decisions on another
person's behalf. The MDA therefore recommends that "or person
reasonably believes that P lacks" in clause 6, subsection
(1) is removed from the Bill.
4.5.6 The MDA's concerns in relation to
clause 6 highlights the need for people who have difficulties
making or communicating decisions to be able to access support
from independent advocates. Without the involvement of an advocate,
and with no requirement for capacity to be independently assessed,
the General Authority gives statutory recognition to a "closed
relationship" that will not be monitored by any third party,
and may therefore be open to abuse. The General Authority was
initially presented to stakeholders as a mechanism by which "day
to day" decisions could be taken by carers, without the need
to resort to formal processes, so minimising bureaucracy. Yet
in the draft Bill, no limitation is placed on the types of decision
that can be taken under the General Authority, other than that
in all the circumstances it is reasonable. The MDA is concerned
that the Bill makes no distinction between a day-to-day decision
taken by a parent or carer and bigger one-off decisions such as
medical decisions or where a person lives, taken in the best interests
of another individual who lacks capacity.
4.5.7 We therefore recommend that the Bill
removes some decisions from the scope of the General Authority.
The MDA believes that the Bill should make it explicit that the
General Authority does not authorise a carer or professional to
make all decisions on medical treatment, in particular to consent
to treatment. The carers' ability to make all decisions on medical
treatment should be restricted to the administration of prescribed
medication and decisions about whether to provide non-prescriptive
medication such as pain killers.
4.5.8 Other medical treatment decisions
should be made by the appropriate health professional under the
General Authority but subject to additional safeguards. The safeguards
would include an obligation for the health professional to carry
out an assessment which confirms that the person concerned is
without capacity to consent, that it is in the best interests
of the person concerned for the treatment to be carried out and
that the person has the support of an advocate to assist the person
to participate in the decision as fully as possible.
4.5.9 Where it is found that a patient lacks
the capacity to make a decision, the health professional, in consultation
with the full clinical team and the patient's family, friends
and carers, must make a decision in the patient's best interests.
Every effort should be made to reach a consensus between relatives,
carers and health professionals. This would include a case conference
bringing together all interested parties, which would ensure that
all those who know the person would have the chance to speak for
their interests. Where there is a dispute as to whether these
interests can be properly defined, the case should be referred
to another health professional that is not part of the treating
team for a second opinion. In cases where a health professional's
view is substantively challenged and agreement cannot be reached
it may, as a matter of last resort, be necessary to refer the
case to the Court of Protection. These safeguards should be made
clear on the face of the Bill. This would strengthen carers' and
carer workers' rights through the requirement on health professionals
to consult with them before making a decision on a person's best
4.5.10 The MDA also proposes that other
decisions that could potentially have a significant impact on
the individual or amount to a significant change in circumstances
should not generally be made under a General Authority. This would
cover decisions such as a change in where someone will live, including
following hospital discharge, and major financial decisions. Where
a person is in contact with services, these decisions should already
be taken as part of their care planning process. The new legislation
would simply require carers and care workers to obtain a single
order from the Court of Protection to legitimately make these
4.5.11 A significant change in circumstances
would need to be assessed on a case-by-case basis, but would include
a change of carers, such as a move away from a residential home
to supported living. We, therefore, consider that decisions about
where someone lives should be subject to similar safeguards as
medical treatment, including ensuring that where possible there
is a case conference about the proposed change. The MDA would
argue that a decision taken under the General Authority in those
circumstances would not be reasonable under clause 6, subsection
(1)(b). It should instead be subject to the approval of the Court
of Protection if an attorney or Deputy had not been appointed.
The exception to this would be if a decision had to be made urgently
or in an emergency, provided the decision was made for the benefit
of the person and in their personal best interests. Similarly,
other important decisions, for instance around childcare, should
also not generally be taken under the General Authority.
4.5.12 The universal scope of the General
Authority also requires a substantial public information campaign
to inform all current and future carers of their rights and responsibilities
under this legislation. The MDA is concerned that the subtle checks
and balances set out in part 1 of the Bill will be lost on many
carers if they are not given full guidance and support. The MDA
is pleased that a separate Code of Practice will be developed
to offer carers guidance in this area. It is important that carers
are briefed on their responsibilities and that these responsibilities
should only be retained if appropriately discharged.
4.5.13 Practical examples to illustrate
the concept of reasonableness might be a useful method of conveying
this both to carers and people who may have difficulties making
decisions for themselves. The MDA proposes a duty on the Lord
Chancellor or his successor to provide all information to stakeholders
on the Bill that he feels necessary, in addition to the requirement
to publish Codes of Practice (clause 30). Supplementary to this,
clause 30, subsection (7)(b) should be amended to that the Codes
of Practice must be taken into account where relevant in court
cases, particularly in the Court of Protection. As stated above,
carers should be able to demonstrate to the Court or any other
investigating agency that their application of the General Authority
has conformed to the principles set out in the legislation. This
may involve the need to keep notes of why a particular decision
was taken, or what steps were taken to enhance the ability to
make decisions of a person with impaired capacity.
4.5.14 The MDA supports the concept of the
General Authority to act reasonablythe reasonableness relating
to the person in that situation. In cases in which the act involves
expenditure, it should be lawful to apply that person's money
where the purchase can reasonably be held to be for the benefit
of that person. This should be an additional requirement on the
face of the Bill. For example, using monies in order to take someone
on holiday may be of benefit for the individual but using that
money to buy a car for the carer may not be viewed as delivering
a direct benefit for the individual.
4.5.15 Restrictions on the General Authority
The MDA supports the proposals in clause 7 that
ensure that a person will not be forced to comply with a proposed
action to which he or she resists unless it is essential to prevent
a substantial risk of significant harm to the person concerned.
However, we believe that this power should be based on an assessment
of immediate harm to justify its use. It will clarify how carers
will be accountable and provide protection from abuse where the
confinement is justified. We prefer the term used in the Bill
"resists" to the Law Commission's wording "objects".
An individual may not actively object to confinement, particularly
if the person has communication difficulties, but may still resist
the proposed course action. The Bill should also place a requirement
on local authorities to intervene in the General Authority where
they do not think that it is being used in the best interest of
the individual and to provide a check in cases where a person
is detained in order to avert a substantial risk of significant
harm to himself, wherever that person lives.
4.5.16 We agree that a General Authority
should not be able to overrule a power of attorney or a decision
made by a Deputy appointed by the court. However the borderline
between the General Authority and the Deputy system is difficult
to draw. eg do the informal arrangements cover all medical matters
until the decision is challenged? At what point should a matter
rest with the court rather than a General Authority to act?
4.5.17 The MDA is generally inclined towards
reserving to the courts decisions on withdraw of medical treatment,
such as in cases involving PVS, and other forms of medical treatment
such as sterilisation. This should be made clear on the face of
Clauses 8-13Lasting Powers of Attorney
4.6 LPAsOverall recommendations
One of the major attractions of a Lasting Power
of Attorney (LPA) is that it involves the Donor, whilst he or
she has capacity, in nominating the person they would wish to
make decisions about personal welfare and property and financial
affairs. As with all the decision-making powers included in this
draft Bill, the MDA seeks clarification of the parameters of the
LPA remit. We would want these at least covering the same remit
as that proposed for the Court of Protection and set out in clauses
17 and 18. In addition, the Court of Protection/Public Guardian
should be required to investigate potential conflicts of interest
when LPAs are registered.
4.6.1 The current approach to informing
third parties that an application for an Enduring Power of Attorney
(EPA) has been made can be administratively complex and not necessarily
wholly reliable. We have some sympathy with the proposal to reduce
the numbers of people who are notified, including the limiting
of notifications to only the Donor and Donee(s). An important
issue here, however, lies in ensuring that the Donor is not subject
to any undue influence when creating the LPA. Unless a third partyie
someone other than the Donor and Donee(s)is required to
be notified by the Public Guardian that an application has been
received, the opportunity would exist for Donee(s) to insist to
the Donor that no-one else is informed of the application. The
MDA feels that provision should be made for at least one other
party to be notified of the application, beyond the Donor, Donee(s)
and the person certificating the Donor's mental capacity. We suggest
that the name(s) of this nominated party is not disclosed to the
Donee(s), to further avoid issues of undue influence. Where the
application is made by the Donee, we suggest that regulations
set out who can and cannot be included as the third party (for
example, excluding the Donee(s) partner, children or other immediate
4.6.2 Information and training will be needed
for Donees to understand the powers that they hold, and the responsibilities
placed on them. In particular, this will be needed in respect
of understanding that their powers under LPA arrangements are
only effective at such times as they are active. At other times,
the Donor will be in control of decisions in those areas of life
otherwise covered by the relevant LPA(s). The MDA welcomes this
principle. Those holding LPAs should at all times be subject to
the Best Interests principle, even when the Donor has capacity.
4.6.3 We agree with the proposals that a
Donor can choose to give to the Donee the power to refuse consent
to life-sustaining treatment, and to give or refuse consent to
treatment to which an existing advance decision relates. However,
we suggest that if an LPA specifies that it is to cover all health
and personal welfare decisions, it should be assumed this includes
these decisions and the provisions relating to advance decisions;
and that the relevant application form should make this clear.
4.6.4 The MDA supports the proposals in
clause 10 that the Donee(s) of an LPA will not have the power
to force the Donor to comply with a proposed action to which he
or she resists. However, we are concerned with the wording of
the proviso, "unless it is essential to prevent a substantial
risk of significant harm to the person concerned". As with
our concerns about the General Authority, the MDA believes this
should be changed to "unless it is essential to prevent an
immediate risk of significant harm to the person concerned".
4.6.5 It will be critical for Donors to
understand that, at times when they have regained capacity, they
have the power to revoke a registered LPA. It will also be essential
that they are supported to be able to act on this power. This
is a specific area where access to advocacy will clearly be of
major benefit to individuals.
4.6.6 The proposed LPA arrangements suggest
a welcome flexibility in how decisions are made during times of
fluctuating or reducing capacity. The MDA seeks, however, clarification
on whether the intention is that those holding a personal welfare
LPA cannot take decisions on health matters at times when "P"
has capacity, and whether this would also apply to other, "personal
welfare", aspects held within the LPA.
4.6.7 We would also propose the following
hierarchy of decision-making:
If a decision is within the scope
of how an individual LPA (or Court-appointed Deputy) has been
set up, the LPA (or Deputy) would "outrank" the General
If a decision is within the scope
of how an individual LPA has been set up, the LPA would "outrank"
The Court may direct an LPA on decisions
on which the LPA has the power to act if P lacks capacity to make
those decisions; and can give the consent/authorisation to act
which the LPA Donee would have to obtain from P if he had capacity
to give it.
4.6.8 Fundamental to this "hierarchy"
is the understanding that it is based on the principles within
the draft Bill. In particular, that these powers to act on behalf
of "P" only exist whilst the person lacks capacity.
MDA believes this critical issue will require training, advice
and information for all parties.
4.6.9 Capacity in the context of LPAs
The Donor must have capacity when creating the
LPA. This is to be assessed by "a person of a prescribed
description" (but this person cannot be a Donee), and a certificate
to that effect must accompany the application. In making the application
to register the LPA, the Donor must sign to say the prescribed
information has been read to him (or he has read it), and that
he intends the authority conferred under the LPA to make decisions
on his behalf in circumstances where he no longer has capacity.
4.6.10 The MDA is concerned that "certification"
seems to go against the principle, set out in clause 3 of the
draft Bill, in which the starting point is always that capacity
is assumed to exist. We make a specific recommendation on this
matter in the separate section in this paper on Assessment. Our
view at present is that, if any such requirement is to be established,
this should apply equally to Donors and Doneesnot least
given that one of the "qualifying" factors for Donees
is that they have mental capacity. (See also 5d.11, pp 28-29.)
4.6.11 Relationship to Enduring Powers of Attorney
These proposals significantly reform existing
arrangements for Enduring Powers of Attorneys in respect of notifying
named parties. Currently, a comparatively long list of whole blood
and half blood relatives must be informed (where these exist)
that an application has been made. It is those "third parties"
who are most likely to lodge an objection over the creation of
particular EPAs. As noted above (4.6.1), the MDA believes that
a requirement to notify at least one party outside of the LPA
arrangement should be retained.
4.6.12 One of the major concerns with current
Enduring Power of Attorney (EPA) arrangements lies in the numbers,
it is believed, of people acting under EPAs that have not been
registered. Many of those holding an EPA for another person appear
not to understand that registration is necessary. It will be important
for Donees to be able to produce evidence that they hold those
powers as near to the material time as possible and for all parties
to understand that those powers are only held once registered.
4.6.13 LPApersonal welfare
Although an LPA must be registered whilst the
Donor has capacity, it is only effective in terms of personal
welfare decisions when the Donor lacks capacity. For people with
fluctuating conditions this will be extremely important, as it
will mean that decisions about health care should not be taken
when the person has the capacity to make their own decisions.
It will therefore be essential that guidance and training is in
place, especially for Donees of LPAs, in order that they are able
to make the distinction; and for health and social care professionals
to understand that the creation of a personal welfare LPA does
not mean that Donees will necessarily have the authority always
to make those decisions. In particular, LPA Donees will need to
have sufficient understanding to be able accurately to judge when
the Donor has regained capacity in respect of those particular
personal welfare questions. Nonetheless, the MDA welcomes the
principle that personal welfare LPAs only take effect if at the
material time the person lacks capacity, as this illustrates in
practical terms that a lack of capacity is not always a permanent
4.6.14 A personal welfare LPA can be set
up to include the power to refuse consent to life-sustaining treatment,
and to give this explicit authority to the Donee. We support this
proposal. With respect to advance decisions, a personal welfare
LPA can also be set up such that the Donee can give or refuse
consent to the treatment to which an existing advance decision
relates. We also agree with this proposal, but suggest that if
an LPA specifies that it is to cover all health and personal welfare
decisions, it should be assumed this includes these decisions
and the provisions relating to advance decisions, and that the
relevant application forms make this clear.
4.6.15 LPAproperty and financial affairs
The registration of a property and financial
affairs LPA would create a situation where the Donee can act as
an "ordinary" power of attorney even when the Donor
still has capacity; but, unlike existing arrangements, it will
also continue after the person has lost capacity. This suggests
that this proposed LPA would mirror both the existing ordinary
Powers of Attorney (which tend to relate to a specified, one-off
financial event) and those for Enduring Powers of Attorney, whereby
once registered a Donee has ongoing authority over the person's
money irrespective of whether or not their capacity fluctuates.
It will be important here for Donors to understand that, at times
when they have regained capacity, they have the power to revoke
an LPA and could choose to do so in respect of financial matters.
It will also be essential that they are supported to be able to
act on this power.
4.6.16 Banks and other financial institutions
may find it easier to know that, once a financial affairs LPA
has been registered, they will be dealing consistently with the
Donee(s) rather than dealing with the Donor some of the time and
the rest of the time with the Donee(s)especially as it
is unlikely they will have sufficient expertise to be able to
ascertain whether or not a Donor has capacity at the material
time. This has been the arrangement with regards to EPAs for many
years, and does not appear to have caused significant problems.
Nonetheless it is not consistent with the overall notion of incapacity
as a situation that fluctuates for some people.
4.6.17 The MDA suggests that further consideration
be given as to how Donors might regain control over their finances
in practical terms during times of capacity other than by revoking
the relevant LPA. Further advice may be needed to banks and other
financial institutions if it is possible that they may deal with
the Donor of an LPA that is registered for financial affairs at
times when the Donor has capacity, and with the Donee(s) at other
times. Support to Donors to supervise Donee(s) during times of
capacity will also be essential. The MDA believes this would also
form an important part of advocacy support.
4.7 Clauses 14-22Powers of the Court/Court-Appointed
Court Appointed Deputies will replace the current
receivership system. As with LPAs, Deputies will be able to take
decisions, only if so appointed by the Court of Protection, across
the full range of financial, health and welfare issues. Deputies
can be appointed to make decisions on one or more strand of decision-making.
Additionally, if a trust corporation is appointed Deputy, it can
only be in respect of property and affairs. The court will be
able to appoint more than one Deputy to act on behalf of an individual
who lacks capacity.
4.7.1 The MDA welcomes the extension of
powers for Deputies to include personal welfare and property and
affairs. We acknowledge the need for this set-up should the person
be born with impaired capacity, or lose their capacity without
having made previous arrangements to nominate an LPA. However,
there need to be full checks and balances to ensure that decisions
made by Deputies on behalf of people who lack capacity are in
their best interests. Whilst we welcome the restrictions on Deputies
set out in clause 20, we feel that they does not go far enough
in safeguarding the rights of people who lack the capacity.
4.7.2 We are concerned that the Court of
Protection should only appoint a Deputy when an independent assessment
of capacity to take a particular decision has been made. Also,
the appointment of a Deputy is a key moment when we believe a
right to access independent advocacy should be triggered. This
also highlights the need for people who have difficulties making
or communicating decisions to be able to access support from independent
advocates. Without the involvement of an independent third party,
assumptions may be inadvertently made about the capacity of that
4.7.3 Restrictions on Deputies
We welcome the restrictions laid out in clause
20, particularly those relating to settling property or the execution
of a will. However, we feel that there needs to be further restrictions.
The court should be given the power to investigate any conflict
of interest, whether professional or personal, before an application
for a Deputy is approved. This will ensure that the applicant
for Deputy is a suitable candidate. Furthermore, the court needs
to be given powers to make checks about the competency or capacity
of the applicant to carry their functions as a Deputyeg
the Court may decide that a person who is already a Deputy for
a number of people may be incapable of taking on additional Deputy
4.7.4 These checks should include liaising
with the Criminal Records Bureau (CRB) and local authorities to
ensure that the applicant is not on any statutory lists or registers
that preclude people from working with vulnerable adults. Finally,
and unlike the MDA's position on LPAs, we do not believe that
Deputies should always be able to give consent to the withdrawal
of treatment. Rather, we prefer a requirement for a single order
of the Court of Protection where circumstances permit.
4.8 Clauses 23-29, Clause 32Advance
The MDA strongly supports the inclusion of Advance
Directives to refuse treatment in the draft Bill. This will clarify
an existing area of common case law, and will enable an individual's
expressed views, regarding withholding or withdrawing of treatment,
to be adhered to even when the person concerned has lost capacity.
We support the tests of validity and applicability that are detailed
in clause 25 and feel they will provide considerable safeguards
to prevent advance directives being abused. We particularly welcome
the inclusion of clause 32, which will make it a criminal offence,
punishable by imprisonment or a fine, to conceal or destroy another
person's advance decision as it will validate and strengthen the
power and influence of the advance decision.
4.8.1 The MDA welcomes the regulations that
require both those acting under the powers of the General Authority
and the "Welfare" Lasting Power of Attorney to be subject
to clauses 23 to 25 (advance decisions to refuse treatment). The
MDA, however, feels it is an omission for the Bill not to require
court appointed Deputies to also be subject to clauses 23 to 25.
This is particularly important because currently Deputies will
be given the power to give or refuse consent to the carrying out
or continuation of a treatment. This will provide a legal loophole
that could be exploited in order to override a person's advance
4.9 Clauses 34-46The Court of Protection
The MDA supports the principle of a unified
Court of Protection with High Court status, and the provisions
for it to have a regional presence. The MDA welcomes the provision
for the Court to make single orders on important decisions. However,
the MDA would be concerned if the costs of such orders were so
high that it would act as a disincentive. In terms of other costs
that might be incurred when making an application with the Court
of Protection, the MDA seeks an assurance that people who lack
the capacity can apply for legal aid to cover their legal costs.
All Court of Protection judges and staff will also need to have
detailed training to fully understand the impact of this new legislation.
Resources will also need to be found to secure training for Court
judges and employees on the needs of the various client groups
they will be dealing with.
4.9.1 The Court of Protection must be fully
accessible to both carers and adults with impaired capacity. The
accessibility of the Court, particularly in relation to single
orders, will be particularly important if the Committee accepts
the MDA recommendation that certain decisions should be removed
from the remit of the General Authority. Finally, the MDA would
like to seek an assurance that the Court of Protection procedures
will apply the Speaking up for Justice measures, which were set
up by the Youth and Justice Criminal Act 1999, when necessary.
The MDA has a general concern that the implementation
of any future Mental Incapacity Act will not be effectively monitored.
Our recommendation is that the Public Guardian/Lord Chancellor's
Visitors randomly inspect a given percentage of carers holding
formal substitute decision-making powers each year, and then report
on the findings of these inspections to Parliament. Allied to
our proposed duty on the Lord Chancellor to provide information
as requested, this would increase the likelihood that the principles
of the legislation would be respected in practice by carers and
The MDA suggests that the Bill should enshrine
in law a person's right to make an advance statement. A person
should be able to specify their wishes and plans in advance in
case they become unable to make decisions for themselves.
5a.1 An advance statement is a declaration
that an adult gives about the care and support they would wish
to receive. One of the types of statement that can be given is
an advance directive where an adult refuses in advance a specific
medical treatment or procedure. At present, this is the only form
of advance statement that is legally binding on professionals,
as established through case law. Advance directives are also included
on the face of the draft Bill.
5a.2 Advance statements and advance directives
provide the opportunity for adults with capacity to state their
wishes and plans in advance, in case in the future they become
temporarily or permanently unable to make decisions or communicate
their wishes. Advance statements also protect the principle of
consent and ensure that crucial life decisions are not reliant
upon the assumptions of professionals involved, particularly with
regards to decisions about quality of life. This is why the MDA
believes that advance statements should also appear on the face
of this Bill.
5a.3 Advance statements enable an individual
to express their views and preferences on a large range of issues,
clarification of who to disclose
information to, and the limits of what can be discussed; and
whom they would nominate as a "nominated
person" in future Mental Health legislation.
Furthermore, advance statements provide both
additional safeguards and direction for a person acting for someone
who has lost capacity.
5a.4 The MDA proposes a requirement for
a person acting under a General Authority, a "Welfare"
Lasting Power of Attorney or as a Deputy appointed by the court
of Protection to act in accordance with an individual's advance
statement. In Clause 2, subsection (2) the existence of an advance
statement would provide guidance around the "practicable
steps" to assist those helping someone who is unable to make
decisions. In Clause 4, the existence of an advance statement
would give a clear indication of all those involved in making
decisions on someone else's behalf of the person's "best
interest", especially as an indication of the person's "past
and present wishes" (Clause 4, subsection (2)(c)(I)).
5a.5 Advance statements should be subject
to the same conditions as advance directives, namely that advance
statements meet the criteria of validity and applicability, and
are deemed to be reasonable and in the person's best interests.
In addition, clause 32, which relates to destroying or concealing
an advance decision, could also be extended to include advance
5a.6 The Explanatory Notes published alongside
the draft Bill state that "Many forms of advance statement
will be relevant as the `past wishes of P' mentioned in the best
interests checklist in clause 4". However, failure to state
the legal position of an advance statement on the face of the
Bill will undermine its value as a mechanism to plan for impaired
5a.7 The value of an advance statement is
that it is an expression of the individual's views and may be
the only means by which the person can communicate this in the
future. This gives it, as a document, substantial importance and
as such there should be clear guidance about how it fits within
the wider powers within the Bill.
5a.8 It is possible to legislate for advance
statements, indeed it is required, in order to give clear legal
guidance on their legal validity, the necessity for and boundaries
to which professionals are obliged to follow their requests and
the circumstances in which they can be overridden. Furthemore,
as the Bill stands, an advance statement will not have the same
legal status or validity as an advance directive and thus will
not receive the same protection from abuse, undue influence when
completed, or destruction.
5a.9 Advance statements would give effect
to a person's wishes and act as a safeguard in relation to the
other formal powers under the Bill. Consultation of any available
record of an advance statement would therefore be one of the "practicable
steps" that must be taken (clause 2(3)) before an assessment
of the person's capacity is undertaken. This would reassure people
that their views and wishes will be considered irrespective of
any future incapacity and could offer concrete protection from
neglect. In specific circumstances, it would be a positive opportunity
for an individual to record their wish for them to receive life-sustaining
5a.10 In complex situations, advance statements
could act as a vital communication tool, clarifying and informing
decisions making for professionals and carers. Around the time
of completion of an advance statement they will facilitate further
discussion and future planning. This will be beneficial in later
decision-making, potentially assisting in avoiding conflict and
disputes. It would also prevent the lack of information or representation
that can result in decisions being made that are contrary to the
person's views or culture.
5a.11 Advance statements could indicate
whom the individual would and would not consider reasonable to
act under the General Authority, should they lose capacity at
some point in the future. This would clarify a potential area
of conflict and provides a more accessible, less bureaucratic
alternative to the "Welfare" Lasting Power of Attorney.
It would act as another process by which an individual's views
could be considered; this is particularly important for those
who are isolated and do not have someone in their lives who know
them well enough to make decisions on their behalf under the powers
of the General Authority.
5a.12 It is vital that everyone is aware
of the existence of either an advance statement or/and an advance
directive. We would hope there would be guidance on the importance
of "registering" them with all the professionals involved,
including both the medical and social care team. We suggest that
this is clarified in further guidance regarding this area.
The Making Decisions Alliance believes access
to independent advocacy could be a vital mechanism for ensuring
the needs and rights of the individual remain at the forefront
of this Bill and that its overarching principles are fulfilled.
It also strongly believes that access to independent advocacy
could help prevent drawn out and distressing disputes and help
avoid costly recourse to the Court. Consequently it believes that
Government should take responsibility for providing the resources
necessary to ensure that access to independent advocacy is available
to those who need it. Annex 6.2 details recent Government initiatives
that mention advocacy.
5b.1 When should independent advocacy support
be made available?
Ideally, an individual should have access to
independent advocacy whenever they feel they want or need it.
However, we appreciate that in a world of limited resources this
may not be possible. For the purposes of this Bill, we are particularly
concerned that independent advocacy is available in the following
When capacity is being assessed in
relation to a major life changing decision.
When a major life changing decision
is being made.
When disputes around the above situations
When a court-appointed Deputy is
to be appointed, a Lasting Power of Attorney is being set up or
activated, or a single order of the Court is being made.
5b.2 In addition, the MDA believes that
individuals without other formal or informal networks of support
should be prioritised for advocacy support. This should be clarified
in a Code of Practice on Advocacy in relation to Mental Incapacity.
5b.3 What is advocacy?
There are numerous definitions of advocacy in
existence. The Independent Advocacy Consortium defines it as "taking
action to help people to: say what they want; secure their rights;
represent their interests; and obtain services they need".
5b.4 Essentially, advocacy is about empowering
people, by enabling them to be more actively involved in the decisions
that affect their lives. A good advocate will possess the skills
and training not only to help a person speak up for themselves,
but also to establish what their preferences are, even when these
cannot be communicated in conventional ways. They will also respect
the particular needs and values of people from different minority
ethnic communities or faith groups. An advocate is not there to
express or impose their own views but to act as a facilitator
and to support the individual to express themselves. In addition,
they should be independent of the organisation that a person is
dealing with to avoid potential conflicts of interest.
5b.5 There is a wide range of advocacy models
available, including Citizen Advocacy, Peer Advocacy, and paid
professional advocacy (see definitions in Annex 6.2: p32, 6.2.3).
In some instances a person may need an advocate in relation to
a particular decision, while at other times or for other individuals
a longer-term relationship is more appropriate. The MDA does not
believe that there is only one acceptable model of advocacy. The
choice of advocacy used should be based on the individual's own
needs and wishes, and take account of what provision is available
locally. However, regardless of the chosen model, the independent
advocate must be adequately trained for their role.
5b.6 Advocacy is not the only way of ensuring
that individuals who may have difficulty making decisions or expressing
their views can participate in decision-making. Other support
mechanisms such as mediation or interpretation services, service
user self-help groups and legal representation at the Court of
Protection may also play a valuable role. However, independent
advocacy is an extremely valuable tool in securing an individual's
right and preferences.
5b.7 The potential benefits of Advocacy in
the context of mental incapacity legislation
Ideally an advocate:
is independenthas no axe to
grind, no history, no vested or conflict of interests;
can be a very effective safeguard,
flagging up concerns or queries to the appropriate authorities;
understands the abilities of the
is focussed on the needs and views
of the individual and ensuring that these are given voice, not
the people or institutions around them (person centred);
is trained not to take a view of
their own, only seeking to uncover or communicate the individual's,
may be able to contribute to the
assessment of capacity by highlighting what they know or can glean
about the individual's abilities or preferences.
5b.8 An individual may need an independent
advocate because of a condition or disability they have, their
life experience, their impaired ability to communicate conventionally
or some combination of these. Their need may also stem from the
type and importance of decision being made: individuals may need
assistance to make some types of decision but not others. Even
people who are incapable of making a particular decision may be
enabled by an independent advocate to express or communicate preferences,
which could assist those around them and make them feel sure that
they are acting in the best interests of that individual. Such
input could also help to develop an individual's capacity to participate
in making decisions over time.
5b.9 Alternatively, an individual's life
experience (often linked to their experience of how society and
institutions have reacted to them and their impairment) may also
have an impact on their ability to make certain decisions. An
example would include someone who has lived in residential care
for all or most of their lives or have lived with family members
who have made all the key decisions relating to them. This person
may be about to move into independent living and, although their
condition may not be directly affecting their mental capacity,
they might still need some initial or ongoing support around choices
and decisions that affect their lives.
5b.10 Some people may have the ability to
make such decisions but may not communicate in conventional ways.
There is a risk that people may make inaccurate assumptions about
the ability of these individuals to make decisions. Conversely,
other people may appear to have highly developed communication
skills that may mask difficulties in making certain types of decisions.
5b.11 When in the Bill should access to advocacy
The draft Bill sets out a number of ways in
which an individual will be able to make decisions on behalf of
adults who lack capacity. The MDA feels that access to an independent
advocate could be extremely beneficial to the person at the centre
of these situations. They could ensure that every effort is made
to utilise and accurately assess the capacity the individual has
and that the person's viewpoint and preferences is explored and
taken account of as far as possible.
5b.12 Advocacy as a safeguard for the General
The draft Bill says very little about the mechanisms
by which capacity will be assessed. However, in view of the wide
powers under the General Authority, it is likely that in most
cases an assessment of capacity will be made by the professional
or carer most relevant to the particular decision to be made,
rather than a person who is specifically trained to assess mental
5b.13 The MDA is concerned that those making
assessments of capacity may not understand the wide range of conditions
that can affect people's ability to make decisions or communicate
their views or have all the skills, knowledge, time or up-to-date
awareness of equipment, which may be necessary to accommodate
these different impairments. It may also be particularly challenging
to assess the capacity of people whose condition fluctuates.
5b.14 This is likely to be particularly
important where life changing decision are being contemplated
(see below). The MDA has consequently recommended that certain
major decisions be removed from the General Authority and that
other arrangements are put in place when such decisions are made
(see Section 4.5: pp 8-12).
5b.15 The MDA believes the potential involvement
of an independent advocate in such circumstances could help ensure
the individual's capabilities are being respected and their views
included. It could also help others ensure they are optimising
the involvement of the individual in the decision-making process,
accessing all the relevant information about the person and so
helping them fulfil their legal duties. Similarly, when there
is a dispute or a desire to appeal against assessment of capacity
decision itself, the individual concerned may find the services
of an independent advocate an essential safeguard in preventing
loss of control over their lives and decisions.
5b.16 Making major decisions or in important
The MDA is concerned about how the General Authority
is defined and where the line should be drawn between informal
decisions and more important decisions. For example a decision
on how an individual spends their days may not appear to be a
major decision, but it could have a major impact on someone's
quality of life.
5b.17 The MDA believes it is possible to
set out some major life changing decisions or situations where
access to an independent advocate will be vital to ensuring that
the individual's needs are properly addressed and their preferences
taken on board. If the person has been assessed as capable of
making the decision, they may need such help to think through
their decision or express their views; if not, an advocate can
help the individual express their preferences.
5b.18 Among the major life changing decisions
or situations the MDA believes access to independent advocacy
support should be available are:
long term treatment with significant
potential side effects and other major medical treatment;
issues where the individual lives
(including independent living options and hospital discharge);
what work they do or how;
where they spend their day or time;
who provides their personal care;
who manages their money.
5b.19 Disputed decisions
MDA members and advocacy organisations are often
asked for assistance when conflict arises between the individual,
their families and professionals involved. Clearly, each of these
groups has legitimate needs, pressures and concerns of their own
which should be acknowledged. However, the most important person
involved is the individual and their views should usually take
precedence. Mediation or Court action might be necessary to resolve
this situation, but the involvement of an independent advocate
in this process can ensure that the particular views and preferences
of the individual are communicated effectively. (An opportunity
for the individual to challenge the decision reached may also
5b.20 Access to independent advocacy may
be particularly important in dispute situations when the individual
is feeling unable to represent their own views clearly, perhaps
due to illness; if their views contrast or conflict with the needs
and views of those around them; or if they are unconventional
or quirky, as this could be interpreted by others as indicators
of a lack of capacity.
5b.21 Advocacy Preventing Abuse
The General Authority envisages a very "closed
relationship" between individual and carer which is not monitored
by a third party to prevent or deal with disputes or potential
abuse. The involvement of advocacy could reduce the risk of abuse.
It could also support those with limited or fluctuating capacity
to navigate existing complaints mechanisms such as PALS, ICAS
or various Ombudsmen where the problems relate to statutory services.
5b.22 Advocacy as a safeguard when a Lasting
Power of Attorney, a Deputy or a Single Order occurs
The MDA believes that access to an independent
advocate could be a very valuable safeguard in relation to an
appointment of a Lasting Power of Attorney, a Court appointed
Deputy or when single orders of the court are being considered.
5b.23 An independent advocate could help
explain and support a person through potentially confusing and
alienating processes such as court hearings. An advocate could
assist in exploring and explaining what the individual feels is
in their best interests and support them in continuing to make
those decisions they are able to make for themselves.
5b.24 Independent advocates could provide
support when an individual is setting up an LPA or revoking it.
They could help people with fluctuating capacity to insist that
they do have capacity to take decisions and that an attorney or
Deputy is not needed to act on their behalf. They could also assist
an individual in supervising an Attorney around financial matters.
5b.25 Access to the advocate could be triggered
by anyone involved in the case who felt the needs and views of
the individual were being ignored or overridden.
5b.26 Proposals to ensure that independent
advocacy is available to all adults with impaired capacity.
The Government should provide funding to ensure
that every local authority area has an independent advocacy service
that has the capacity to provide independent advocacy support
for people affected by the Bill. This may mean providing funding
to existing services or provide funding for new services.
5b.27 We would also recommend that each
ICAS service has a named person to advise on the new legislation
and good practice and to signpost individuals, families and professionals
to appropriate sources of advocacy and/or undertake advocacy when
there is a crisis eg life threatening situation.
5b.28 There should be a duty on professionals
(social workers, medical staff, lawyers, care staff or agencies)
responsible for the capacity assessment to involve an advocate
where a key life changing decision needs to be taken.
5b.29 There is much to learn from the experience
in Scotland where there is a requirement for local advocacy strategies
to be set in every local authority area the creation of an Advocacy
Safeguards Agency, which facilitates the development, evaluation,
research, and dissemination of good practice around independent
See Annex 6.2 for answers to frequently asked
questions on advocacy.
Appointeeships are not included in the draft
Bill, but MDA believes this area of welfare provision is also
highly pertinent. Appointeeships are arrangements that involve
the handling of an individual's state benefits, and are set up
through the offices of the Department for Work and Pensions (DWP).
There are few statistics on the number of appointeeships held;
in 1996, figures provided from the Lord Chancellor's Department
suggested that 214,482 older people had such an appointeeship
arrangement (many others may also use an agent to collect monies
on their behalf, usually from banks, building societies or post
5c.1 Appointee action is normally instigated
by an application from the prospective appointee. An officer from
the Department for Work and Pensions (or local authority for housing
benefit) will then interview the incapacitated person to confirm
that they are unable to manage their own affairs. If there is
any doubt about the person's capabilities, medical evidence should
be obtained. The officer will also interview the applicant to
explain the responsibilities of an appointee and confirm that
they are suitable to act.
5c.2 Appointees have access to all the state
benefits to which someone is entitled to receive (for example,
state retirement pension, Disability Living Allowance or Attendance
Allowance, Income Support/Pension Credit), but not to other monies
(for example, occupational pension or savings other than accrued
benefits), which may currently be under the control of an EPA
or receiver. Although guidance to DWP staff makes clear that if
there is already an EPA or receiver then appointeeship is not
appropriate, it is not unknown for an appointee and an EPA to
be acting at the same time. For those whose only income is via
benefits (for example, those pensioners who do not have an occupational
pension) it means that the appointee has control over the whole
income if the person has been assessed, on the current "one-off"
occasion by DWP staff, as being mentally incapable of managing
their financial affairs. This system does not accord with the
principles of the draft Bill. Nor does it give people protection
as there are few checks made by the DWP on appointees.
5c.3 While the MDA believes it to be very
important that there is a system to enable financial decisions
to be made on behalf of people dependent upon welfare benefits
who lack capacity it is very concerned that the current system
is potentially open to abuse and exploitation. Examples of this,
taken from recent Parliamentary Ombudsman's Annual Reports are
given in case studies 1 and 2, 5c.5-5.c6: p 26.
5c.4 Given that people with impaired capacity
who are dependent upon welfare benefits are likely to be even
more vulnerable than those with access to independent income/financial
assets, as indeed potentially are their carers/family members,
loss of control over their personal finances is likely to represent
a major event in their life. The MDA therefore believes that appointeeships
should be brought within the scope of the Bill. Decision-making
as to whether someone should be subject to an appointeeship should
require a proper assessment of the person's capacity in relation
to their ability to make financial decisions. Appointees should
be bound to the same "best interest" principles as those
operating as Deputies or Donees of LPAs. A clear system of monitoring
and reviewing appointeeships should be put in place to support
5c.5 Appointeeship Case Study 1an example
of fluctuating capacity
The Pension Service: failure to investigate fully
whether to revoke an appointeeship.
5c.5.1 Mrs W complained of events from January
1998 when The Pension Service had received notification that she
had been admitted to a residential nursing home for elderly mentally
ill people. In June The Pension Service had accepted an application
by her daughter, Mrs X, to be her appointee but had failed to
investigate fully whether Mrs W remained incapable of managing
her own financial affairs when that question arose in May 1999.
Had they done so, it was most probable that they would have revoked
the appointeeship at an earlier stage.
5c.5.2 The Ombudsman found no evidence of
maladministration in the way in which The Pension Service had
reached the decision for Mrs X to be Mrs W's appointee. However,
they had failed to investigate fully whether Mrs W remained incapable
of managing her own financial affairs. The Chief Executive wrote
to Mrs W offering her personal apologies. The Pension Service
paid Mrs W £317 for loss of personal expenses allowances,
£1,750 for loss of disability living allowance and £340
for loss of use of those monies. They also made a consolatory
payment of £200 for the gross inconvenience, embarrassment
and severe distress Mrs W had suffered as a result of their actions.
5c.5.3 Parliamentary Commissioner for
AdministrationAnnual Report 2002-03 Chapter 3Investigated
casesThe Department for Work and Pensions and its Agencies,
including the Appeals Service C1560/02.
5c.6 Case Study 2How Those with Appointees
may be Vulnerable to Abuse
Benefits Agency: alleged improper appointment
of an appointee.
5c.6.1 Mr A was unable to handle his own
affairs after his discharge from hospital and the Benefits Agency
(BA) appointed a neighbour to act for him, and receive his benefit.
Mr A subsequently alleged that the neighbour had misappropriated
the benefit. The Ombudsman criticised BA for their poor recording
of the circumstances surrounding the appointment of the appointee
but found no evidence that the decision had been maladministrative.
The Chief Executive undertook to remind staff about the importance
of good record keeping; and to consider amending the instruction
on appointeeship to include a requirement to notify customers
on the appointment of an appointee. He apologised for shortcomings
in the handling of the case.
5c.6.2 Parliamentary Commissioner for
AdministrationAnnual Report 1999-2000 Chapter 3Investigated
casesThe Department for Work and Pensions and its Agencies,
including the Appeals Service C176/00.
The MDA fully supports the presumption of capacity
set out in clause 3 of the draft Bill. The MDA does not wish to
see the ability for any adult to make their own decisions infringed
without an independent assessment of that adult's capacity. The
draft Bill does not explain how assessment will work in the context
of this new legislation, and we believe this omission must be
5d.1 The nature of capacity in the draft
Bill is set out in clauses 1 and 2 (see MDA response on clauses
1-7). In relation to assessment, it is important to highlight
that a person only lacks capacity in relation to a matter if at
the material time he is unable to make a decision for himself
(MDA emphasis). The literal interpretation of this clause would
require a continuous assessment of capacity each and every time
that person was faced with a similar decision, but this would
not be in the interests of the individual concerned, their carers
or the relevant professionals.
5d.2 However, the MDA believes it is equally
unacceptable for the draft Bill to erode an individual's right
to make their own decisions before capacity has been accurately
and independently assessed. The MDA would suggest that this would
be a gross infringement of article 8 of the European Convention
on Human Rights as enshrined in the Human Rights Act:
5d.3 "Everyone has the right to respect
for his private and family life . . . There shall be no interference
by a public authority with the exercise of this right except such
as is in accordance with the law and is necessary in a democratic
society in the interests of national security, public safety or
the economic well-being of the country, for the prevention of
disorder or crime, for the protection of health or morals, or
for the protection of the rights and freedoms of others."
5d.4 The MDA believes that very few of the
vulnerable adults we represent are totally unable to make their
own decisions. Instead we view capacity as a sliding scale, with
a person's ability to make their own decisions determined by a
range of external factors, including time, physical location and
the support available to them. Given that most vulnerable adults
will fall between absolute capacity and an absolute inability
to make decisions, the importance of assessment in underpinning
the work of the draft Bill cannot be overstated.
5d.5 Given its fundamental importance, coverage
of assessment in the draft Bill is alarmingly sparse. Presentations
by officials have made clear that substitute decision-making should
always be a last resort (clauses 2-4). Yet nowhere in the draft
Bill are mechanisms set out by which the application of this principle
of last resort will be monitored and by which abuses of the powers,
in particular the General Authority, will be reined in.
5d.6 "Assessment" is not included
within the list of expressions defined in the Bill at Clause 50,
subsection (3); the MDA believes that "assessment" should
be clearly defined. In clause 30, subsection (1)(a), the Lord
Chancellor is required on enactment to prepare a code of practice
for the guidance of persons assessing whether a person has capacity
in relation to any matter. The MDA seeks clarification as to the
legal status of this Code of Practice, and to any sanctions that
will be applicable if the Code is breeched or ignored.
5d.7 In Clause 15, subsections (a) and (b),
the Court of Protection is empowered to make declarations as to
A person has or lacks capacity to
make a decision specified in the declaration.
A person has or lacks capacity to
make decisions on such matters as are described in the declaration.
5d.8 In detailed discussions prior to the
drafting of the Bill, officials confirmed that the functional
approach to assessing capacity set out in the Making Decisions
policy paper would be followed in the Bill. Making Decisions describes
the functional test as, "whether the individual is able,
at the time when a particular decision has to be made, to understand
the nature and effect of the decision". Making Decisions
explicitly states that the functional approach is designed to
prevent unnecessary intrusion into an individual's affairs and
to provide the flexibility necessary for individuals whose capacity
to make decisions fluctuates, such as some people with mental
5d.9 The first power of the Court of Protection,
to make a declaration as to whether an individual lacks capacity
to make a specific decision, is in accordance with the functional
approach. However, the second power, to make a declaration as
to whether an individual lacks capacity to make decisions, "on
such matters as are described in the declaration" may undermine
the functional approach. The MDA believes that "such matters"
in this clause will allow the Court to declare that a person is
unable to make a particular type of decision indefinitely. If
this interpretation is correct, this power may allow the Court
to decide that an individual is unable to make decisions on all
matters relating to their finances, their medical treatment or
their personal welfare, without regard to the particular circumstances
surrounding each decision within these categories.
5d.10 The MDA would suggest that the second
power should be downgraded, so that the Court of Protection may
only state that an individual currently lacks capacity in relation
to a particular decision, but may also express an opinion that
an individual regularly experiences significant difficulty in
making decisions on a particular issue and that this incapacity
is therefore likely to continue. A declaration of this nature
would then allow carers to claim protection under the revised
General Authority proposed by the MDA, which would now require
a carer to present evidence that an independent assessment of
capacity had been carried out for the person in their care. A
declaration from the Court of Protection would be the highest
level of evidence necessary for carers to claim protection under
the General Authority, and would be appropriate where a person's
capacity was contested or regularly fluctuated.
5d.11 The draft Bill sets out two sets of
powers that can grant a substitute decision-maker the right to
make decisions for an individual across one or more categories.
The first type of powers, Lasting Powers of Attorney (LPA), relate
to people who wish to plan for future incapacity (see LPA section
of MDA response). For these powers, it is clearly necessary for
the Donor of an LPA to have capacity at the time the LPA is made.
Currently, the Bill deals with this in Schedule 1, 2, (e), which
requires a person of "prescribed description" (similar
to requirements around passport applications) to certify that
a person has capacity. This requirement appears to contravene
the presumption of capacity in clause 3 of the Bill, as the onus
should be to demonstrate that an individual who wishes to make
an LPA does not have capacity if any doubt exists. The MDA suggests
that Schedule 1, clause 2, subsection (e) should be deleted and
replaced with a requirement for a person of prescribed description
to sign a statement that, in their opinion, the intended Donor
of an LPA has understood the nature and purpose of the LPA. This
would adhere to the functional approach to assessing capacity,
as the person of prescribed description is only asked to assess
the person's capacity in relation to a particular decision (the
making of an LPA) at the material time.
5d.12 The second set of powers relates to
individuals who are born with impaired capacity, or who have lost
capacity without making an LPA. In these cases, the Court of Protection
may appoint a Deputy to manage their personal welfare (including
healthcare) or property and affairs, or may make a single order
to resolve any dispute on a particular decision (clauses 16-20;
clause 38). While the MDA broadly supports the principle of Court-appointed
Deputies (see section of response on Deputies), we believe that
Deputies should only be appointed when the court is satisfied
that an individual regularly experiences significant difficulties
in making a particular type of decision. This should require a
body of expert evidence, potentially including assessments from
individuals representing different professional groups. The burden
of proof should be higher for Deputies than for a single order
of the Court, because as an ongoing power the appointment of a
Deputy contravenes the functional approach to assessing capacity.
However, a similar duty should apply to single orders of the Court,
where a pure functional approach to assessing capacity will be
5d.13 The Bill is silent on which professional
groups would be eligible to make an assessment or pronounce on
an individual's capacity, for example in providing evidence before
a declaration by the Court of Protection. This is particularly
important as Ministers and officials rightly wish to minimise
bureaucracy in the implementation of the draft Bill, and do not
proposed any formal certification of incapacity as applies to
medical treatment in the Scottish Act. Given this, the MDA would
emphasise the importance of a holistic approach to determining
capacity, with equal weight given to perspectives stemming from
a social as from a medical model. Individual organisations within
the MDA can produce a range of evidence that demonstrates a low
level of awareness amongst medical practitioners of particular
conditions, disabilities and disorders that may impair an individual's
5d.14 In addition, the draft Bill currently
lacks any accessible mechanisms by which an individual may challenge
a formal or informal assessment of capacity made about them. Although
an individual assessed as lacking capacity can make an application
to the Court of Protection to challenge any declaration made by
the Court on the basis of this assessment (40, 1, a), the Bill
does not explain how Ministers envisage that a person who may
have a significant mental disorder can be supported to make such
an application. This is another reason why the MDA believes that
any individual assessed as lacking capacity who becomes the subject
of the formal powers set out in the draft Bill should have the
right to access independent advocacy.
The MDA is disappointed that the Government
has decided not to proceed with this issue as part of its review
on mental capacity, as proposed in the consultation paper Who
Decides?. We believe that the current situation is unacceptable,
and the new legislation and in particular the General Authority
will make the need for public law protection still more urgent.
We feel that the only way to enable older people, people with
a learning disability or mental health problems to receive the
most appropriate help when abused is through public law protection.
For example, many people with a severe learning disability or
older people are unable to care for themselves or are liable to
a significant risk of exploitation because of an inability to
perceive or assert their rights and interests. There is a need
to replace relevant sections of existing legislation such as the
National Assistance Act 1948 that are inadequate and ineffective
in respect of protecting people from exploitation and neglect.
5e.1 The MDA believes that social services
should have the duty to investigate cases of neglect or abuse
where there is evidence of significant harm or exploitation. This
power would allow the local authority to review existing community
care arrangements. The MDA believes that social services should
be the lead agency for investigation of abuse but that social
services departments should be responsible for co-ordinating responses
from other agencies within a prescribed timescale.
5e.2 There is a need to maintain a balance
the risk against an individual and respect for an individual's
autonomy. Once it has been established that a person has the capacity
to refuse the support of the local authority, that choice should
1 In this submission and the appendices, "carers"
is used to refer to friends and relatives who provide unpaid care.
Those who are engaged in the provision of care services are referred
to variously as "professionals", "care workers"
or "paid carers". Back