82.Memorandum from Carers UK (MIB 771)
(i) Carers UK is an organisation of carers,
run by carers, for carers. We provide information and advice,
carry out research and seek changes from policy makers that will
improve carers' lives.
(ii) Carers are people who provide care
to a relative, partner or friend because they are frail, chronically
sick or disabled. The care they provide is unpaid. There are six
million carers throughout the UK and their support has been valued
at an estimated £57 billion a year.
(iii) Carers UK welcomes the publication
of the draft Bill and believes that it will help to solve many
of the problems faced by carers in providing support to a person
lacking capacity to make certain decisions. However, amendments
are needed to improve the Bill.
(iv) Carers will be affected in three major
ways by the Bill. First, the degree to which they are involved
in decision-making and their views taken on board if they have
significant knowledge about the person lacking capacity. Second,
the decisions that professionals make on behalf of the cared for
person directly impact on the carers' life and it is vital that
their needs are considered. Finally, the legislation could provide
a sounder and clearer legal basis on which carers can make decisions.
(v) In short, Carers UK recommends the following
changes to the Bill:
at present, Clause 4 does not distinguish
between a carer and paid professional and it is vital that it
there is no hierarchy of decision-making
in Clause 4 so equal weight could be given to a full-time carer's
views, as they would to a care assistant who visits once a week
for half an hour;
a safeguard to ensure that carers'
views are taken on board if they are not a Donee or Deputy. This
could take the form of a sub-clause to state that they must have
regard to the carer's views if a decision is likely to impact
on them. This would make the legislation compatible with the Human
Rights Act 1998.
1. ABOUT CARERS
1.1 Carers UK (formerly Carers National
Association) is an organisation of carers, run by carers, for
carers. We represent the views and interests of the six million
carers throughout the UK. Carers UK provides information and advice
to carers and we respond to around 20,000 enquiries annually.
Through our wider network of Associates, we are in touch with
around 300,000 carers.
1.2 We regularly ask carers about all aspects
of caring and encourage them to articulate their needs and experiences
to us. Their recommendations and this research inform our policy,
on which this response is also founded.
1.3 Carers UK is a member of the Making
2. CARERS UK'S
2.1 We welcome the publication of the Bill
for two main reasons. First it begins to address some of the problems
that carers face in caring for a relative, partner or friend who,
for a period of time, lacks capacity. Second, Carers UK has called
for legislation on mental incapacity for some time and it is vital
that it is introduced in advance of any new Mental Health Bill
as so much of the latter is dependant on establishing capacity.
2.2 However, there are elements which concern
us and that we believe to be neither workable nor practical. We
are concerned that lack of clarity and definition will result
in poor practice not only for carers, but also for the people
they care for. In our response, we have tried to focus on how
these issues might be addressed.
2.3 There are currently six million carers
throughout the UK. 1 However, not all these carers will provide
support to someone who lacks capacity. The vast majority of carers
will be caring for someone with solely a physical disability.
However, according to the General Household Survey (GHS), one
in four carers (24 per cent) provides support to someone with
a "mental disability".2 The GHS does not define mental
disability, nor does it look at the level of capacity of the person
being cared for.
2.4 It is likely the majority of carers
will welcome more clarity in the law. Is it possible that some
carers will view some of the new procedures as burdensome and
it is important to ensure that there are not unreasonable or unnecessary
demands placed on carers. Our response to the powers of general
authority (clause 6) discusses this in more detail. One concern
of carers is likely to focus on cost, particularly the costs of
applications and resolutions of disputes through the Court of
3.1 One of the key objectives of the Bill,
as set out in the paragraph 4 of Annex A of the Partial Regulatory
Impact Assessment, is to address the problem that many carers
face; namely that while they often have the best interests of
the person that they care for at heart, they have no clear protection
in law for the decisions they take.
3.2 The other problems that carers experience
are difficulties in accessing information, such as medical information
because there is no clear legal framework underpinning sharing
of information. There are also times when carers are acting in
the best interests of the person they care for but disagree with
a professional. Our members tell us that often professionals are
more readily listened to, than carers. This is true not only of
major decisions such as where to live, medical treatment, etc,
but also of day-to-day decisions about the way that people are
cared for, what they have enjoyed doing, etc.
3.3 One of our members has cared for her
two daughters with severe learning and physical disabilities for
over 25 years. The local authority disagreed that the parents
were acting in the daughters' best interests, wanted to place
them in residential care and went to court to remove them from
the parents' care. The local authority's proposal would also have
involved moving the daughters with hoists, which they dislike
intensely and stopping certain activities which the local authority
deemed too difficultsuch as swimming once a week. The parents
also take them out quite frequently on different activities. The
Official Solicitor appointed to advocate on their behalf of the
two young women, conducted an independent assessment into the
situation. They concluded that the local authority's plan would
have been worse for the two women and the Official Solicitor won
the case against the local authority.
Definitions in the Bill
3.4 Another major problem with the Bill's
drafting is that it does not distinguish between carers ie those
who give support to a chronically sick, disabled or frail partner,
relative or friend and those people who provide care as part of
their employment or as a volunteer. This is inconsistent with
other legislation to date, namely the Carers (Recognition and
Services) Act 1995, Carers and Disabled Children Act 2000, Community
Care (Delayed Discharges, etc, Act 2003 and draft Mental Health
Bill all of which make clear distinctions in primary legislation
between the two groups.
3.5 There are several practical reasons
why the Bill needs to distinguish between these two groups. Carers
are people who provide the bulk of care to people who are chronically
ill or disabled in the community. The care they provide is estimated
at £57 billion per year. 3 If they provide substantial amounts
of care over a period of time they gain significant knowledge
and insight into the condition of the person they care for. Carers
want to be seen as partners in care and want to contribute to
decision-making about the person they care for.
3.6 The other important aspect of caring
is the impact that decision-making has on the carer's own life.
Caring already takes a significant toll on health, well-being
and household finances. In one survey, half of the carers providing
significant amounts of care had sustained a physical injury since
becoming a carer, and half had been treated for a stress-related
illness. 4 Carers are statistically more likely to suffer from
ill-health than non-carers. 5 Another survey found that 77 per
cent of carers providing full-time care had their financial situation
affected by caring. 6 The same survey showed that the more care
a carer provided and the longer they provided long-term care,
the more likely they were be to in receipt of Income Support and
have less than £1,000 in savings. The Census estimates that
around 200,000 carers currently work full time and care for over
50 hours per week, spending almost every hour outside of work
caring. 7 In one Carers UK survey of its members, six out of ten
had given up work in order to care and this rose to nearly eight
out of ten for those aged 56 to 60. 8
3.7 Carers are often closely related to
the person they care for but it is important to distinguish between
a family member who might take an interest in care, but not provide
care. Those providing the most substantial amounts of care are
most likely to live with the person they care for and be their
partner. In other words, they are likely to have more knowledge
than paid staff in terms of the person's preferences, likes and
3.8 Carers provide a range of care. This
includes physical tasks such as moving, bathing, washing, dressing,
shopping, transport and feeding and financial tasks such as managing
finances, payment of bills, ordering of equipment, etc. The aspects
of care most commonly overlooked are those to do with organisation
of care and emotional and psychological care. Organisation of
care includes making appointments, arranging and cancelling care,
assessments, form filling, discussion with professionals, etc.
Emotional and psychological care includes reassurance, encouragement
to continue to keep up medication regimes, reminding of events
and tasks, regularly checking in with the person to see how they
are etc. The organisation of care and emotional aspects of care
can be substantial and can be regular in that they are regularly
carried out or there is regularity during a period of illness.
This level of care distinguishes the carer, whatever relationship
they might be to the person being cared for, from an interested
family member who may not be providing any care. Carers UK does
not represent the latter.
3.9 Decisions and actions that paid staff
make in relation to the mentally incapacitated person directly
impact on the carer's life. For example, a decision to change
the care assistant's rota frequently for a man with Alzheimer's
Disease means that the carer has to teach the care assistant each
time how to move, handle, talk to her husband. Her husband finds
change stressful and it makes him very anxious and she has to
spend more time reassuring him.
3.10 Carers often tell Carers UK that professionals
do not respect their judgement, their knowledge about caring,
or the preferences of the person that they care for. For example,
when a young woman with severe learning disabilities went into
residential respite care for a short period, her mother briefed
staff about how to reassure and support her daughter if she became
distressed. Her daughter became distressed on several occasions,
the staff were unable to reassure her and demanded that the carer
come and take her daughter away because she had become "unmanageable".
The carer contacted Carers UK to take a complaint because the
advice she gave staff had been ignored and her daughter's experiences
of respite care were extremely poor. Her break, the first for
several years had been cut short and she now feels that she cannot
take a break again because her daughter's quality of care was
so bad. The carer's own health is now severely at risk because
she cannot take a break.
3.11 Carers often feel that there are big
differences in the way that decisions are made. For a professional,
they make a decision about the care of a person, but they do not
have to live, day-to-day with the consequences of that decision.
They may change jobs, move out of the area, retire, etc. Carers'
lives, on the other hand, are directly affected by even the smallest
decision to change food, dress, etc. because of the way that the
person they are caring for will react to it.
3.12 We do not believe that it was necessarily
the intention of the Department to confuse the two groups since
the documentation supporting the draft Bill alludes to decision-making
made by carers ie family members and friends who provide support
unpaid. However, the way that the Bill is drafted would have unforeseen
3.13 It is vital that the Bill separates
out these two groups of people in order to ensure that carers
needs are not overlooked and that their views are given proper
weight in decision-making. This would affect several parts of
4. BEST INTERESTS
4.1 Carers UK welcomes the principle of
Clause 4, which already exists in good practice and common law,
that anyone acting on behalf of the person lacking capacity must
be acting in their best interests.
4.2 Clause 4(2)(d)(ii) currently states
that "any person engaged in caring for him or interested
in his welfare" should be consulted where a person does an
act or makes a decision on behalf of the person who lacks capacity.
Carers UK is concerned that this gives equal decision-making weight
to both professionals and to carers.
4.3 The Clause, in that subsection, also
goes on to list Donees, Deputies of the Court and any other person
named by the person as someone to be consulted. There is no decision-making
hierarchy in this section, which Carers UK would like to see rectified.
For example, the drafting of this section gives equal weight to
the views of a care assistant who visits twice a week for half
an hour to help bathe a person with dementia as it does to the
carer who provides support 24 hours a day, seven days a week.
4.4 In addition, the Bill needs to give
consideration to the fact that the impact of decisions made in
the best interests of the person without capacity have to be considered
in the context of the carers' own human rights under the Human
Rights Act 1998. For example, a man with dementia refuses all
care and only lets his wife care for him. Even when she does,
he can be aggressive towards her. He is awake several times in
the night, and walks around the house during the night and his
wife has not had a full nights sleep for several years. He is
doubly incontinent and has difficulties eating. His wife has cared
24 hours a day, seven days a week for many years and she is exhausted.
Her GP has told her that there is nothing he can do to help as
her husband refuses help. All other avenues of help explored have
met with the same response. As is common to many caring situations,
relatives and friends no longer visit because they are frightened
of his behaviour and find his disabilities difficult to deal with.
They both have had little or no outside social interaction for
years. When he falls, he is admitted to A&E and his wife refuses
to have him home. Professionals consider it in his best interests
to go back home. However, to discharge him back home without support,
could contravene his wife's own human rights under Article 8,
a right to private and family life. Carers UK believes that the
Bill needs to give further consideration to this matter.
4.5 Carers UK recognises that a Deputy or
Donee may be empowered to make decisions on behalf of the person
without capacity and that this provides a more secure legal basis
than currently exists. Where this person is not the carer, and
the carer may choose not to be this person because of the complexity,
etc. Carers UK believes the carer must be consulted. The draft
Mental Health Bill has set out a similar framework where the carer
must also be consulted alongside the Nominated Personif
they are not one and the same person.
4.6 In conclusion, Carers UK would recommend
the following changes to Clause 4:
a separation in definitional terms
between a carer and a paid professional;
a hierarchy of decision-making;
a safeguard to ensure that carers'
views are taken on board if they are not a Donee or Deputy. For
example, the inclusion of a sub-clause to state that they must
have regard to the carer's views if a decision is likely to impact
on them. This would make the legislation compatible with the Human
Rights Act 1998.
5. GENERAL AUTHORITY
5.1 Carers UK understands the objectives
behind the clause on general authority, but also envisages a number
of tensions with it. There are likely to be a large number of
carers acting day-to-day under general authority. It is vital
that the guidance on the Bill, when published, establishes what
is reasonable and practicable in terms of consultation to satisfy
the conditions of Clause 4. For example, we would consider it
neither reasonable nor practicable for the carer to consult a
list of people to see what would be in the person's best interests
if the carer, who was also the person's wife, wished to change
their bath to a shower. However, if a care assistant were to change
the regime of the person being cared for, for example, certain
new or different foods, we would expect them to consult the carer.
5.2 Similarly, Carers UK appreciates the
practicalities behind allowing people acting under general authority
to commit expenditure. However, there are potential tensions.
For example, a family on a very tight income, would not welcome
a care assistant purchasing a piece of equipment for the person
without capacity, without consulting the family, whilst expecting
the family to reimburse them for the expenditure.
6. MAKING ASSESSMENTS
6.1 Carers UK is concerned that there is
little detail in the Bill about who is responsible for carrying
out the capacity assessment of the person and how this is determined.
We recognise that it would be inappropriate for primary legislation
to set out too much detail. However, we would recommend that the
Bill addresses this aspect. This is particularly important to
ensure that the person lacking capacity either permanently or
temporarily, is given a fair assessment. Carers, equally, need
confidence that the assessment will adhere to the same standards.
6.2 Similarly, the Bill does not set out
a framework to demonstrate who has authority to decide what is
in the best interests of the person lacking capacity. Whilst the
Court will take a final decision over any disputes about best
interests, we feel it is vital to ensure that there is clear decision-making
before this stage. This is vital not only for professionals but
also for any carers and advocates working with and on behalf of
people lacking capacity. For example, if the carer disagrees with
a professional's view of what is in the person without capacity's
best interests, how would they go about challenging this decision?
Again, if the carer disagrees with a decision about what is in
the person's best interests, where does this dispute start to
7.1 Carers UK believes that it is vital
that the two Bills work together and welcomes the fact that the
Committee will look at their interaction.
7.2 Carers UK believes that, although the
Bill excludes situations where a person is under the Mental Health
Act 1983, there are instances where there would be crossover.
For example, someone who makes provision for a Donee to take over
their affairs when they lack capacity, and they are subject to
a provision under the Mental Health Act, if they lacked capacity,
they would, presumably, have already empowered someone to take
certain decisions on their behalf.
7.3 For carers, the interaction of the two
Bills will become even more complex if there is no clarity about
overlap. For example, a situation could arise where there was
a Donee or Deputy, a carer, and a Nominated Person (under the
draft Mental Health Bill), all with various levels of decision-making.
Under the current Mental Health Act 1983, this would also include
the Nearest Relative, who is not necessarily the carer. Carers
are usually the only people to liaise between all professionals
and they often complain that professionals do not share information
nor "talk to each other". This often results in vital
information being missed, information having to be repeated and
poor care of the person being cared for. Who is then empowered
to make decisions which are in the best interests of the person
being cared for would become increasingly complex.
8.1 Carers UK does not have any criticisms
of the way that the consultation period was carried out in preceding
the publication of the draft Bill.
8.2 Carers UK has welcomed the fact that
the Bill is being published in draft form as it believes that
this provides an opportunity to rectify some of the problems with
9.1 In conclusion, therefore, Carers UK
welcomes a number of aspects of the Bill, but believes that further
work needs to be carried out. In particular, this must ensure
that the Bill appropriately distinguishes between carers and paid
professionals to ensure the right balance of care and decision-making
between the two groups.
1. Census 2001, Office of National
2. Maher J, Green H, Carers 2000,
Office of National Statistics, London 2002.
3. Without Us? Calculating the value
of carers' support, Carers UK, London, May 2002.
4. Henwood, M, Ignored and Invisible,
carers' experiences of the NHS, Carers National Association
(now Carers UK), 1998.
5. Hirst, M, The Health of Informal Carers,
a longitudinal analysis, Social Policy Research Unit end of
project report, University of York, October 2000.
6. Caring on the Breadline, the financial
implications of caring, Carers National Association (now Carers
7. Census 2001, op cit.
8. Caring on the Breadline, op