DMH 193 Carers UK
Evidence to the Joint Committee on the Draft Mental
(i) Carers UK is the leading UK-wide organisation
of carers, run by carers, for carers. We warmly welcome the
role of the joint committee scrutinising the Bill and the opportunity
to submit evidence.
(ii) Carers UK has restricted its evidence to
a few key points relating to carers, which are not already covered
by the Mental Health Alliance. We have not, for example, compared
the existing rights of the Nearest Relative to those of the Nominated
Person as we did not wish to avoid duplication of evidence.
(ii) The main points of our evidence are as follows:
* The definition of carers is more workable.
* The new provision that seeks a carer's consent
that they wish to be known as the carer is particularly welcome.
* There are issues of clarity in the Explanatory
Notes with regard to carers that need to be addressed.
* The duties to consult carers at key stages
are very necessary.
* The Code of Practice needs to ensure that all
relevant information is considered when carers are consulted,
not just the patient's wishes and feelings about treatment.
* The human rights of all main parties, patient
and carer(s), need to be balanced, i.e. the human rights of the
patient should not be to the detriment of the carer and vice versa.
This should be addressed in the Code of Practice needs to address
* The Code of Practice needs to address information
sharing with carers.
* The Code of Practice needs to address prejudice
held by some professionals against carers in relation to suitability
and eligibility to be the nominated person.
* The Code of Practice needs to cross-refer to
key pieces of relevant and related legislation containing carers'
rights i.e. Carers (Equal Opportunities) Act 2004 and the Community
Care (Delayed Discharges etc.) Act 2003.
1. About Carers UK
1.1 Carers UK is an organisation of carers, run
by carers, for carers. It represents the views and interests
of the UK's six million carers who provide support, unpaid, to
family members, partners or friends because of frailty, chronic
illness or disability.
1.2 Carers UK works with policy makers and practitioners
to raise awareness of carers and to find solutions that prevent
social exclusion and negative effects of caring. We also run
an information and advice service which responds to around 20,000
enquiries from carers and professionals. Through our extended
network, we are in touch with over 300,000 carers.
1.3 Carers UK also has offices in Wales, Scotland
and Northern Ireland, each with their own advisory board of carers.
2. Overall view of the new draft Bill
2.1 Carers UK warmly welcomes the opportunity
to submit evidence to the Committee. We have been involved at
every major stage of consultation on the draft legislation, have
submitted evidence at various stages and have discussed potential
problems and solutions with the Department of Health, where appropriate.
2.2 Carers UK's evidence has been largely confined
to the pertinent issues affecting carers that have not been covered
elsewhere in evidence submitted by the Mental Health Alliance.
This is because we did not wish to duplicate evidence already
2.3 In relation to the last draft of the Mental
Health Bill, we note that the Department of Health has taken on
board a range of earlier points made by us, which is welcome.
The slightly different drafting raises some new issues, too,
which we touch upon.
3. Are the proposals contained in the draft
Mental Health Bill necessary, workable, efficient and clear?
Are there any important omissions in the Bill?
Definition of carers
3.1 In relation to the last Bill, Carers UK made
a number of suggestions which we believed would improve the workability
of the Bill.
3.2 We raised the issue that the definition of
a carer in the last Bill did not include those who might not be
currently caring, but would be so in the future - and this might
be problematic in the workability and interpretation of the Bill
if it became law. The current definition is now consistent with
that used in the Carers and Disabled Children Act 2000, as we
suggested and, in our view, more workable.
3.3 The all-important definition of a carer
in Clause 301 (1) also has differences to the Carers and Disabled
Children Act 2000. These clarify that a carer can also be someone
who provided support before the person with mental illness was
detained in hospital. This should thoroughly dispel any potential
misunderstanding about who is, was or is about to become, a carer.
In our view, this should improve the workability of the Bill
and make it clearer.
3.4 There is an area of confusion, but this is
raised by wording of the Explanatory Notes, and not by the Bill
itself. The misleading paragraph appears under paragraph 56.
This suggests that there is one exception to the carer being
consulted and that is where, "consultation with the carer
takes place before a patient's nominated person is appointed in
accordance with Chapter 1 of Part 8 of the Bill. In these circumstances,
paid carers, i.e. those providing care by virtue of a contract
of employment or as a volunteer for a voluntary organisation,
are also consulted". Carers UK would be concerned if the
Bill used this "paid carer" definition as we would have
argued that this would have introduced confusion between the definition
of a carer.
3.5 However, the Bill itself is, in fact, far
more open, well drafted and more workable under Clause 236 (1)(b)
than the definition used in the Explanatory Notes. Subsection
(1)(a) suggests that the carer will be consulted first, or under
subsection (1)(b) if the patient has no carer, such other person
who know the patient (if any) as the appointer considers it appropriate
to consult. This definition is suitably broad to encompass a
close friend, but who did not provide substantial care; an advocate,
a volunteer, a paid member of staff, etc.
3.6 To avoid confusion about the Bill, Carers
UK would suggest a slight amendment to the wording of para. 56
in the Explanatory Notes to better reflect the interpretation
of the Bill.
3.7 Carers UK also views the Bill's requirements
of professionals, to consult carers, as very necessary. Each
of these stages - assessment, treatment, discharge and care plan
- is crucial for carers and the person for whom they care. At
each stage carers will have vital information to contribute to
help professionals make decisions about appropriate care and treatment
3.8 We also consider it vital that carers are
singled out for consultation rights, in case they are not the
same as the nominated person. Otherwise, carers can be excluded
from crucial stages of the consultation process and yet they are
the ones who provide the care and support after the professionals
go home. Not only does this make the Bill more workable, but
we also consider it to be more compliant with the Human Rights
3.9 Carers UK also welcomes the new drafting
of the requirements to consult with carers under Clause 12 in
Part 2. We raised our concern in the consultation on the last
draft Bill, about the narrow scope of consultation with carers.
The last draft Bill suggested that the carer should only be consulted
about the patient's wishes and feelings about treatment. Carers
UK felt that this would miss a great deal of important contextual
detail that might ensure better treatment for the person with
3.10 Clause 12, Part 2 has been redrafted in
a more workable way. First it suggests that consultation about
the patient's wishes and feelings about treatment is a minimum
consultation. Second it ensures that the carer is consulted under
subsection (6)(b) about what effect the medical treatment or matter
is likely to have on both him and patient. This provision is
warmly welcomed by Carers UK. It is a way for professionals to
collect all relevant information to ensure the best treatment
possible for people with mental illness. It should also ensure
that the professional takes account of the broad scope of the
human rights of all concerned.
3.11 We would recommend, however, that the Code
of Practice and other guidance accompanying the Bill, make it
clear that an open approach to consultation needs to be taken.
This could make the crucial difference to meaningful consultation
with the carer. For example, if the treatment involves the carer
supporting the person with mental illness at a particular time
in the day, because they want and need that support it might affect
their ability to work. This could leave the carer with a difficult
choice - having to fall back on state benefits for income and
supporting the person you care for and about, or to continue working,
keep paying the bills but not support the person for whom they
care. If the consultation with carers, as set out in the Bill,
takes account of important issues like this, the treatment could
be made at a time convenient to both patient and carer so that
the family's welfare is respected.
3.12 We also welcome the fact that the carer
has to be notified if the conditions have not been met and the
patient is about to be discharged. This was a vital part missing
in the last draft Bill and we warmly welcome its inclusion.
Discharge from hospital is probably the single most difficult
time for all carers, when extra arrangements need to be made,
there is often little time for any concerns to be raised, carer's
assessments to be done and the right sort of and amount of support
given to the patient and family. For carers, this makes this
part of the draft Bill workable. We also consider this to be
compliant with the Human Rights Act 1998.
4. Is the balance struck between what has
been included on the face of the draft Bill and what goes into
Regulations and the Code of Practice, right?
4.1 In discussing the last draft of the Bill,
Carers UK was concerned about the way that some mental health
professionals and other professionals wrongly exclude carers of
people with mental illness from coming under the Carers (Recognition
and Services) Act 1995 and the Carers and Disabled Children Act
2000. Both define a carer, as this draft Bill does, as someone
who is providing or about to provide regular and substantial care.
Some practitioners have defined this in physical terms and have
excluded any care that might be episodic - such as is often the
case with mental illness.
4.2 In our response to the consultation on the
draft Bill, we suggested that the definition would be more workable
if the Bill clarified that 'regular and substantial' could also
include care of an episodic nature and which was not based on
physical tasks. The Government has made the suggestion that there
should be clear clarification of this in guidance. Since the
introduction of Standard 6 of the National Service Framework for
Mental Health has started to change attitudes, we consider that
this would be the right balance. However, it will still be important
to cross refer to this in the Code of Practice since prejudice
4.3 The Bill does not mention a carer's own
right to assessment or informing them of their right to an assessment.
With the introduction of the Carers (Equal Opportunities) Act
2004 in April 2005, which directs local authorities to inform
carers of their rights, we understand that this would be an unnecessary
duplication of legislation. However, we believe that is it vital
to cross refer the Code of Practice to this new piece of legislation
and other legislation.
4.4 One major problem with mental health legislation
is that it is often seen as being separate from other carers'
legislation and practice is not integrated. Other landmark legislation,
namely the Community Care (Delayed Discharges etc.) Act 2003,
does not apply to discharge from a hospital where the patient
has been detained under the Mental Health Act 1983. Yet the principles
contained in the Community Care Act are vital for carers. They
state that carers who have had an assessment in the last 12 months
should be automatically reassessed. It also places a duty on
local authorities to consider which services might be necessary,
having carried out a carer's assessment, to ensure that the patient
is safe and ready for discharge. We would like to see where the
Government sees the principles of the Community Care (Delayed
Discharges etc.) Act 2003 and the Carers (Equal Opportunities)
Act 2004 fitting in with this legislation. However, we consider
the Code of Practice to be the best vehicle for this.
Appointment of the Nominated Person
4.5 Carers UK welcomes the new provision under
Clause 236 subsection (6), which ensures that the carer is consulted
about the choice of the patient's nominated person. In some respects
we believe that this will make the Bill more workable and understandable.
Our previous submissions raised the concern that the carer might
have important views or information to contribute that might affect
the appointment of the nominated person. We feel that this new
drafting now addresses this point.
4.6 We consider it vital that there is strong
direction in both regulations and guidance, as to who the 'most
suitable eligible person' might be. With so much stigma attached
to people who care for a person with mental illness - as being
part of the problem not the solution - there is the danger that
carers will automatically be excluded as being 'suitable' by the
appointer of the nominated person. This will be of huge importance
to carers who will fear exclusion, which is borne out of prejudice
from a number of professionals.
4.7 Unfortunately, the way that this Bill has
now been drafted, there is a decreased chance that the carer is
the nominated person. This is because the last draft of the Bill
included a default. If the person with mental illness was not
able to appoint a nominated person, there would a be a default
mechanism to the carer and then to a list of individuals.
4.8 Our concern is that, if the carer is not
the nominated person, there could be key instances when they are
not given vital information. One example is not having copy of
the care plan. If this matter is not resolved on the face of
the Bill, which Carers UK believes it should, then it is vital
that the Code of Practice refers to other guidance which suggests
that it is good practice to ensure that copies of vital documents
are shared with the carer.
5. Is the draft Mental Health Bill in full
compliance with the Human Rights Act 1998?
5.1 Carers UK cannot comment in relation to full
compliance, however, there are a few areas we have considered
in relation to the Human Rights Act 1998.
5.2 First, we consider the new definition of
carers under Clause 301(1) to be fully compliant with Human Rights
Act. The Clause suggests that the carer has indicated that they
wish to be considered for the purposes of this Act as the carer
of the patient. In surveys undertaken by Carers UK, the majority
of carers are often not given the choice about whether or not
to become a carer or taking on the potentially vast responsibilities
and stresses that often come with the role. Carers UK considers
that this lack of choice has impacted, on occasions, on a carer's
right to family life. Not only does this drafting give carers
a choice, but it also ensures that the professionals do not waste
time with a person that they have inappropriately assumed is,
or would be, the carer.
5.3 Another issue regarding carers' human rights
has been addressed in this second draft of this Bill. The first
Bill placed a duty on carers to respond if they were consulted
about the wishes and feelings of the patient in relation to treatment.
Carers UK felt that placing this duty on carers would be inappropriate
and detrimental to their rights. Carers can be blamed by the
person they care for, for their admission to hospital for treatment.
This can ruin relationships and trust for years. Secondly, if
a carer gives information about someone and this is entered onto
their personal file, that person with mental illness has a right
to view any personal data held on them. This has, on occasions,
caused problems for carers where sensitive details have been shared
in what carers thought were confidential circumstances. The fact
that the draft Bill has now removed this duty to give this information,
the carer at least has choice about whether they wish to provide
the information, which is welcome.
5.4 There is an issue raised in the Bill regarding
the carer's human rights which is not dealt with in the Bill.
In responding to queries from carers through our information
and advice service about the operation of existing mental health
legislation, we are aware that the human rights of individuals
- person with mental illness and carer - may be at odds with one
another. Carers UK recognises that this can be difficult to balance
at times. However, the Human Rights Act is also clear that, in
pursuing the rights of one individual, it should not be to the
detriment of another.
5.5 To give a fairly typical example from the
enquiries that we receive, a patient was about to be discharged
from hospital. He was an adult son, lived with both his parents
and his younger siblings who were under 16. The mother was informed
that he was about to be discharged from hospital and she asked
for information about his care plan and treatment as she was concerned
about the safety and welfare of the family as well as her ability
to support her son in the way that he needed to be supported.
Prior to his treatment, he had reacted badly to medication and
had become violent and aggressive towards all members of the family.
She was unwilling to let him come home until she had this important
information. The practitioner said that the son had refused permission
to share this information and she was told that refusing to have
him home was illegal. Clearly all have rights - the son to privacy
of information, the mother and carer, the right to a family life.
Pursuing his rights could infringe the rights of the family and
vice versa. We recognise that this difficult question is probably
not possible to solve on the face of the Bill. It is also important
to recognise that not all people with mental illness and carers
are in conflict. However, we believe that there need to be clear
and strong statements in the Code of Practice and guidance which
explore the issue of the carer's own human rights to ensure that
the interests of one party do not impinge on those of another.
5.6 In particular, we would suggest that the
Code of Practice actively pursues the sharing of information as
a priority and directs professionals to seek consent in a positive
way and when the person with mental illness is well.