7 Other care and support matters |
Young carers and parent carers
draft Bill does not make direct provision for young carers, other
than in relation to transition planning. Contact a Family raised
concerns about the approach being taken, telling us that "the
retention of three amended Carers Acts means that although parent
carers' theoretical rights will be protected this is only by virtue
of obscure and muddled rump legislation." Similar criticisms
apply to the legislation covering young carers. Other evidence
argued that the requirement to provide a substantial amount of
care on a regular basis, removed for adult carers of adults, should
also be removed for young carers and parent carers.
their reasons for this, the Department of Health told us that
"Provisions are not the same, and never will be the same,
because, when you are talking about young carers, you are talking
about a child, so it is not just about identifying a young carer
and saying, 'Okay, what does that person need to support them
in their caring role?' Actually, there is a question of, 'Is that
an appropriate caring role and is this in fact a child in need
who needs support in different ways?'"
agree with the Department on the importance of preventing children
from undertaking inappropriate caring responsibilities. In paragraph
182 we recommended an amendment to clause 12 which would help
to achieve this. However we share the concern of a number of
our witnesses that an unintended consequence of the draft Bill
applying only to adults will be to leave young carers with lesser
rights than adults.
Moira Fraser made the point to us that "We have to have two
pieces of legislation that talk to each other." While many
of our witnesses told us that young carers should be treated differently,
echoing the view of the Department, they did not want to see young
carers relegated to a lesser status. Dr Fraser summed it up when
she said: "What we need to be doing is this: the adult legislation
needs to ensure that children who are in a household with a person
who is being assessed for care and support are recognised as being
part of that household and may have a caring role so that a referral
can be made, so they can have an assessment. Hopefully, under
adult services, the adult services can look at the needs of the
adult and meet those needs so that the child does not need to
take on a caring role."
Patterson QC made plain the unintended consequence: "When
there is an assessment it is still done under the old regime so
there is still a requirement to show that a young carer is delivering
substantial and regular care. The threshold is different; it is
not the low threshold we have recommended in the adult social
care statute. That is where we think there is an area for improvement."
She also told us that "we made various recommendations in
relation to young carers. Those have been taken forward in part
but not in whole, and our view is that they are much better taken
as a whole." 
for the Law Commission, "The bit missing is the provision
of services. The Bill, as currently drafted, makes provision for
assessment in relation to young carers but our recommendation
is that there should be assessment and there should be the provision
of services in certain circumstances. To enable that to be delivered
we were recommending that the Carers (Recognition and Services)
Act 1995 and the Carers and Disabled Children Act 2000 were both
amended to bring them into line with our recommendations in relation
to the adult social care statute as it then was. Either they would
then be brought together so there would be a freestanding young
carers' statute or they would be transported into what has become
the Care and Support Bill."
Department of Health accepted that it is important to ensure that
the provisions work together well.
However, we believe a confused picture has emerged of the provision
available to young carers, and how it relates to adult social
care. If young carers are to be properly supported children's
services need to have the responsibility to assess the needs of
the child and, where it becomes apparent that there are needs
the adult has, refer back to adult services so that the adult's
needs can be met. It needs to work in both directions. In supplementary
evidence the Department
assured us that it "is in discussions with the Department
for Education about how best to address the concerns that have
been expressed, including the implications for existing and planned
response to points raised by Committee members on the need for
amendments to the draft Bill the Minister of State, Norman Lamb
MP, said: "I
would just say we have to be prepared to look at this. We have
noted your concerns and we will have further discussions both
within the Department but also across the divide between us and
welcome the Minister's commitment to discussions on young carers,
and expect the Departments of Health and Education to work together
to ensure that young carers do not fall between the cracks or
face a higher threshold for receiving any support. The most straightforward
solution would be for the draft Bill to be amended in line with
the Law Commission preference to bring updated legislation for
young carers into the draft Care and Support Bill.
on the application of the assessment and transition clauses should
provide local authorities with clear information on the support
available to carers and young carers. This guidance should aim
to ensure that there is easy access to provision for carers, regardless
of which legislation the provision is made under.
Law Commission originally proposed that local authorities should
have the power to provide services to 16 and 17 year olds. This
would include young carers.
The Government rejected this, taking the view that this was better
dealt with in legislation specifically dealing with children and
young people for the reasons given above. In oral evidence, the
Law Commission stood by its view that such provision was appropriate.
There is a real need to prevent inappropriate caring by young
people. However, the Committee agrees that local authorities should
have the flexibility to provide services under the draft Care
and Support Bill in appropriate cases.
agree with the Law Commission's view that local authorities should
have the power to make provision for children aged 16 and 17,
including young carers, where an assessment under clauses 39 to
44 identifies need. We further recommend that this should be done
in a way that recognises that the aims of support to young carers
will often be different from those for adult carers.
Redress and complaints
the Law Commission embarked on its review in 2008 it argued that
it should consider the "efficacy of the legal structures
in place for complaining about, and seeking redress for, failures
in decision-making and service provision by local authorities."
This would have included considering whether a tribunal should
be set up to provide "independent merits review" of
care and support decisions made by local authorities. However,
the Government at the time took the view that this was outside
the scope of the review, and the Law Commission did not pursue
excluding redress and complaints from its consultation paper in
the Law Commission received a number of responses arguing for
a tribunal. Amongst those responding was the Henry Spink Foundation.
They suggested that there should be a tribunal for the resolution
of disputes relating to social services assessments, including
eligibility and the detail of support packages. They argued that
"operating a tribunal to resolve disputes would save considerable
amounts of money in place of each local authority resolving disputes
view has been echoed in evidence to our inquiry. In written evidence
ADASS and the LGA told us: "
we are concerned that
a bill so strongly focussed on personal entitlements does not
provide for any means of redress other than through judicial review."
In their evidence Advice UK expressed concern about this omission
from the draft Bill: "Specific complaints and appeals duties
are notably missing from the Bill
Duties regarding complaints
and appeals about social care assessment and reviews are not adequately
represented within the Bill, nor are specific requirements about
the length of time any process should take." Leonard Cheshire
offered a solution: "We would also like to see an appeal
route for people who are challenging decisions within the system,
particularly decisions about eligibility. At present it can be
incredibly difficult and time-consuming for an individual to challenge
decisions that they consider to be unfair or unreasonable. Having
the protection of judicial review is important, but, like the
Law Commission, we would like to see a specific route of challenge
through an independent tribunal for contested decisions within
the system." They concluded: "This additional route
should help to limit the potential for costly and lengthy court
its report the Law Commission said: "Notwithstanding the
decision not to take this area forward in the substantive project,
the issue of complaints and redress came up at the majority of
consultation events we attended, and was raised in several submissions.
In particular, many consultees argued that a community care tribunal
was needed to provide a merits review of local authority decisions
in this area. Although this issue is outside of our remit, in
our view both Governments
should consider reviewing this area in the future."
their response to the Law Commission, the Government
pointed out that changes had been made to complaints handling
in 2009, and that its White Paper had set out further actions
to improve and increase the opportunities to offer feedback. They
we do not believe that any more substantial
legal reform in this area is required at this time." However,
the response did not directly address disputes over decisions
made by local authorities.
the Government published their response they have announced plans
to implement a capped cost system. This will result in a large
influx of people into the local authority assessment system for
the first time. As we explain in Chapter 2, we believe that the
arrangements for determining a person's eligibility and then capping
care costs by setting a notional cost to be accumulated in a care
account will be highly contested. Although the draft Bill largely
replicates the existing legal framework it does extend and clarify
entitlements, particularly for carers. It also incorporates into
statute for the first time Government policy on personalisation
and self-directed care.
believe that the significant extension of local authority responsibility
for assessment, and the introduction of the well-being principle
into decision making, warrant an urgent review of arrangements
for providing redress and complaints resolution. The Government
should reconsider establishing a care and support tribunal to
provide independent merit reviews of decisions made by local authorities.
also seems likely that the boundary between free NHS and means-tested
local authority services will continue to be contested. The draft
Bill and the establishment of a capped cost system are likely
to make the boundary visible to more people. Clause 21(6) provides
a regulation making power to prescribe how to resolve disputes
between local authorities and NHS bodies over the boundary. However,
it is not just about disputes between public bodies. The Government
should consider giving a care and support tribunal the responsibility
for resolving disputes over NHS Continuing Health Care.
our Call for Evidence we asked witnesses to address the specific
question whether the draft Bill strengthened corporate accountability
for neglect and abuse, and what would be the risks and benefits
of creating a new offence of corporate neglect. This is not a
new issue, but was of course brought to the fore by the events
at Winterbourne View.
their written evidence VDOG wrote: "We strongly support the
creation of a new offence of corporate neglect within the draft
Bill. The chief benefits include: bringing accountability and
underlining in law the seriousness of abuse of vulnerable people
pointed out that "new offences of ill treatment and wilful
neglect were brought in by the Mental Capacity Act 2005
however it appears there may be a gap in the legislation
The view of Action on Elder Abuse was that "individual and
corporate bodies that take decisions that lead to the abuse of
people in vulnerable situations should be accountable in law for
was a contrary view from Social Care and Institute for Excellence:
"The offence of corporate neglect is covered in section 37
of the Health and Safety at Work etc Act 1974.The risks of creating
a new offence in relation to social care is that it may promote
a risk averse culture across partner agencies and discourage open
and constructive dialogue between organisations, particularly
when learning lessons from safeguarding adults reviews."
They prefer to rely on SABs. H&S at Work Act 1974 s.37(1)
in fact applies only to "relevant statutory provisions",
none of which are relevant.
Chairman has recently introduced a ten-minute rule Bill. His motion
was "That leave be given to bring in a Bill to hold corporations
criminally accountable for abuse and neglect in care settings;
to make provision to compel any person or organisation to supply
information to Adult Safeguarding Boards; and to introduce a new
offence of corporate neglect whereby a corporate body can be found
guilty if the way in which its activities are managed or organised
by its board or senior management is a substantial element in
the existence or possible occurrence of abuse or neglect."
The first reading of the Corporate Responsibility and Safeguarding
of Adults from Abuse and Neglect Bill was on 16 January 2013.
supplementary written evidence Leonard Cheshire Disability said:
"We believe that a criminal offence along the lines proposed
in the Ten Minute Rule Bill will have an important declarative
effect. It would affirm publicly the extreme concern of all right-minded
people that no-one receiving social care services should be at
risk of abuse or neglect and that providers must use all their
skills and experience to this endor face severe consequences."
asked the Department of Health for their views. They replied:
"The Department is reviewing how corporate bodies are held
to account for the provision of poor and harmful care. The horrific
abuses that occurred at Winterbourne View emphasise the importance
of corporate entities having robust processes in place for overseeing
the quality of the services they provide. We aim to complete this
review and to bring forward proposals to improve the arrangements
for corporate accountability in the Spring. The review is considering
both regulatory sanctions available to CQC and criminal sanctions.
We are also assessing whether a fit person test should be introduced
for Directors of providers of care services."
our inquiry Robert Francis QC published his report into the Mid
Staffordshire NHS Foundation Trust. He made 290 recommendations,
including proposals to strengthen arrangements in the NHS for
corporate accountability, criminal liability, and proposals to
transfer the Health and Safety Executive's powers of criminal
prosecution for both individuals and organisations to the Care
Quality Commission. The Secretary of State told us that he was
"very sympathetic" to this proposal.
welcome this proposal to close the regulatory gap and to review
the accountability of corporate bodies, though it is not clear
whether proposals brought forward "in the Spring" would
be in time for inclusion in the draft Bill. We would be concerned
if the Government sought to close the regulatory gap for health
but left it unaddressed in care and support. When we put this
point to the Minister of State he replied: "I totally agree".
We recommend that where abuse or neglect of an adult has resulted
in the commission of an offence by an employee of a body corporate
acting as such, and this is proved to have been committed with
the consent of, or to have been attributable to any neglect on
the part of, a director, manager or similar officer of the body
corporate acting as such, he as well as the body corporate should
be guilty of an offence.
put to the Secretary of State that a statutory duty of candour
should not be considered for the NHS alone, but care and support
too. In reply he told us that he could not "see why one would
want to introduce something like a Duty of Candourif that
is what we decide to do, and I should add we are very sympathetic
to the idea of doing itthat did not apply more broadly
than just to the acute sector."
We share the Secretary of State's view that the application
of a statutory duty of candour should not be limited to health
but should extend to all regulated care settings. The Care and
Support Bill would provide an early opportunity for the Government
to legislate on these matters.
Free end of life care
have heard from a number of witnesses who want to see proposals
for free end of life care implemented. Macmillan Cancer Support
told us that 73% of people with cancer would prefer to die at
home, but currently only 27% are able to do so.
Marie Curie Cancer Care argue that "for people who are terminally
ill, time is one of their most precious resources. It is important
that they be able to spend their time with their family and loved
ones in the place where they would most like to be."
improvements could be seen if our recommendation to fast track
assessments for those on the end of life register is adopted.
However, this would still leave many people paying for their care.
Macmillan Cancer Support have told us that: "...there is
anecdotal evidence from social care professionals that people
are put off from applying for the care they need, or may even
refuse care, as they are worried about the impact it will have
on their families' finances after they die."
further danger of charging for end of life care is that it leads
to "time-consuming debates [between health and social care
providers] about who should pay for and deliver different aspects
of a person's end of life care."
A joint submission by Help the Hospices, Macmillan Cancer Support,
Motor Neurone Disease Association, National Council for Palliative
Care and Sue Ryder echoes these concerns and points to research
by the Nuffield Trust showing that greater access to social care
support has the potential to reduce the need for admissions to
hospital at the end of life. They argue that "If we could
reduce by just 10% the number of hospital admissions ending in
death in England, the potential saving would be £52 million."
agree that "people approaching the end of life and their
families should not have to face this financial or emotional burden,
nor be forced to go without the care that they desperately require."
Witnesses have welcomed the Government view that "there is
much merit in providing free health and social care in a fully
integrated service at the end of life".
A decision on the final policy is not expected until 2014. Nevertheless,
those who made submissions on this point argued strongly that
it is critical that the draft Bill should allow free social care
at the end of life to be delivered without the need for further
questioned on this point the Department of Health confirmed that
they "have not undertaken a policy decision that there should
be a statutory right to free end-of-life care."
However in further written evidence they also clarified that "If
a decision to introduce statutory free end of life care is taken,
the powers in draft clause 14(4)(b) or (c) would enable regulations
to provide for this."
DS1500, to which we have referred in paragraphs 180-181 in connection
with fast-track assessments for the terminally ill, prescribes
special rules for those certified by their doctor as suffering
from a progressive disease and not expected to live longer than
6 months. In the case of such people we agree with the Government
and witnesses that free social care at end of life has "merit",
and strongly endorse the case for its introduction at the earliest
opportunity. We welcome the clarification by the Government that
the draft Care and Support Bill does not need to be amended to
Human Rights Act 1998
number of witnesses have emphasised the importance of human rights
to the provision of care and support.
The Human Rights Act 1998 applies to public bodies and "any
person certain of whose functions are functions of a public nature"
and, therefore, to local authorities implementing the draft Care
and Support Bill. This means that local authorities must observe
the rights under the Human Rights Act 1998 and the provisions
of the draft Bill must be interpreted, as far as possible, so
as to be compatible with those rights.
and support providers are often responsible for the care of some
of the most vulnerable people in our society. We do not have to
look far for documented evidence of abuse by providers. As one
witness put it "Every week we are struck by another headline
which reveals the neglect and ill treatment of older people either
in their own home, a care home or hospital.".
The report by the Care Quality Commission into Winterbourne View
provides a stark example of what can happen when things go wrong.
well as the risk of abuse, a not uncommon problem
is of a self-funding resident whose family has made a legitimate
complaint about their care being given 4 weeks' notice to quit.
A resident who has their care commissioned by a local authority
has the right to challenge such a notice by reference to the Human
Rights Act, but a self-funder who arranges their own care cannoteven
if the trauma of moving would shorten their life, cause enormous
distress and wrench them from a "home" in which they
had lived for many years.
witnesses have pointed to two areas where there are concerns regarding
the application of the Act. First, clause 51 enables a local authority
to delegate certain of its functions under the draft Bill. The
joint submission by Mind, Rethink Mental Illness, the Mental Health
Foundation, the Centre for Mental Health and the Royal College
of Psychiatrists argues that there must be a clear chain of accountability
where functions are delegated. They go on to say that "It
is also essential that the Bill states explicitly that the body
with delegated authority to carry out a function on behalf of
a local authority must be subject to the same obligations as the
local authority itself. This includes obligations under the Equality
Act 2010, Human Rights Act 1998 and Freedom of Information Act
agree with this assessment. Clause 51 should be amended to
state that the person with delegated authority to carry out a
function on behalf of a local authority is subject to the same
legal obligations as the local authority itself.
the Equality and Human Rights Commission have told us that: "The
Commission has received advice from Senior Counsel that, because
of the case of YL v City of Birmingham Council,
human rights protection does not extend to ... home care services.
As a result approximately 500,000 older people may lack the protection
of the Human Rights Act. Similarly, disabled adults receiving
home care under these arrangements are unlikely to be covered
by the Human Rights Act. This means many people may be denied
direct legal redress against the care provider for human rights
such abuses occur is demonstrated by the findings of the Commission
in their inquiry into home care.
As a result of the YL case, legislation was required to
ensure the application of the Human Rights Act 1998 to publicly
funded residents of private care homes. This was done through
section 145 of the Health and Social Care Act 2008. However, this
did not address the gap in protection for those in receipt of
publicly funded, but privately provided, home care services, and
this gap remains. Nor did the Act extend protection to residential
care other than that provided under the sections 21(1)(a) and
26 of the National Assistance Act 1948, such as services provided
under section 117 of the Mental Health Act 1983.
notes to the draft Bill state that "The Department's view
is that all providers of publicly funded or arranged health and
social care services should consider themselves bound by section
6 of the Human Rights Act".
In her evidence on 7 February Sally Warren said: "You are
absolutely right, we don't want to create either duplication or
a gap in the provision of human rights."
a subsequent note the Department of Health told us that the Government
considered that there were dangers in any amendment to the Human
Rights Act which specified explicitly that third sector and private
providers of care were subject to the section 6 duty; this in
their view risked casting doubt on the interpretation of the Act
in other sectors. But they added that it was the Government's
view that "all providers of publicly arranged care and support,
including private and voluntary sector providers, should consider
themselves to be bound by the duty imposed by section 6 of the
Human Rights Act 1998".
do not think that, in light of the YL case, this view can
be sustained without specific provision in the draft Bill to continue
protection under section 145 of the Health and Social Care Act
2008 and to close the remaining gaps in protection. While we
agree that all providers of publicly arranged care and support
should consider themselves to be bound by the obligations of the
Human Rights Act, we are of the view that, as a result of the
decision in the YL case, statutory provision is required
to ensure this.
the risk of harm or abuse in care is not determined by who pays
for or arranges the care. The Government's view, as set out in
the notes to the draft Bill, shows a belief that protection under
the Human Rights Act extends to care arranged by a local authority,
even if it is self-funded. As we say, we do not agree that this
does not require explicit statutory provision. However, regardless
of this view, it does not address the situation of self-funders
who arrange their own care and support. The Government will need
to consider whether it is right that, of all adults in need of
care, only this group should lack the protection of the Human
Rights Act, solely because there is no public sector involvement
in arranging or paying for their care.
commentators have found it difficult to understand why a provider
of care in such cases should not be subject to the law that protects
patients whose care is commissioned by a local authority.
This is particularly so, since it concerns some of the most vulnerable
people in society - and very severe shortcomings have been identified
in some care providers, be they public hospitals or private care
draft Bill should be amended to ensure that private and third
sector providers of care services regulated by public authorities
are deemed to be performing public functions within the meaning
of section 6(3)(b) of the Human Rights Act 1998.
This would also bring such providers within the scope of the general
public sector equality duty,
which uses the same definition of "public functions"
as the Human Rights Act.
187 For example, the Children's Society. Back
Q 20. Back
Q 157. Back
Q 83. Back
Q 84. Back
Q 20 Back
Supplementary evidence, 30 January 2013. Back
Q 339. Back
Recommendations 58 and 59 at pages 162 and 164. Back
Q 99. Back
Law Commission Scoping Report, November 2008, paragraph 4.348. Back
Law Commission Consultation Paper, February 2010. Back
The Law Commission report is addressed to Welsh ministers as well
as to the Government. Back
Written evidence, paragraph 48. Back
Written evidence, paragraph 35. Back
Written evidence, paragraph 2.38. Back
Q 315. Back
Q 315. Back
Q 332. Back
Written evidence, paragraph 1.3, 2.1. Back
Written evidence, paragraph 4.4. Back
Written evidence, paragraph 4.6. Back
Written evidence, part 1. Back
Macmillan Cancer Care, written evidence, paragraph 4.5. Back
White Paper: Caring for our Future. Back
Gallagher Q9. Back
Department of Health supplementary evidence, 30 January 2013,
Note 8. Back
For example, Disability Rights UK, Real Life Options, the NHS
Confederation and the Equality and Human Rights Commission. Back
Human Rights Act 1998, section 6(2). Back
National Pensioners Convention, written evidence, paragraph 4.1. Back
Care Quality Commission, Review of compliance: Winterbourne
View (July 2011). Back
Joint Committee on Human Rights: The meaning of public authority
under the Human Rights Act (9th Report, Session 2006-2007,
HL Paper 77, HC 410, Written Evidence, Ev 11. 5, Memorandum from
Age Concern at paragraph 5.2) Back
Written evidence, paragraph 30. Back
(2007) UKHL 27 Back
Close to Home: An inquiry into older people and human rights
in home care, Equality and Human Rights Commission, 2011. Back
At paragraph 134. Back
Q 316. Back
Note for the Joint Committee on the Human Rights Act, 21 February
See for example comments of Baroness Howarth of Breckland (amongst
others): House of Lords Official Report, 22 May 2008, column GC634. Back
The public sector equality duty (PSED) is set out in section 149
of the Equality Act 2010, the broad purpose of which is to integrate
consideration of equality and good relations into the day-to-day
business of public authorities. Back