Written evidence from Carers UK (COM 107)
1. ABOUT CARERS
UK
1.1 Carers UK represents the views and interests
of the six million carers in the UK who care for their frail,
disabled or ill family member, friend or partner. Carers give
so much to society yet as a consequence of caring; they experience
ill health, poverty and discrimination. Carers UK seeks to end
this injustice and will continue to campaign until the true value
of carers' contribution to society is recognised and carers receive
the practical, financial and emotional support they need.
1.2 Carers UK is an organisation of carers,
run by carers, for carers, with a reach of around 1,500 organisations,
including many run by carers, who are in touch with around 950,000
carers between them. Including Carers Week our reach extends to
around 4,000 groups and 2.5 million carers.
1.3 Carers UK runs an information and advice
service and we answer around 16,000 queries from carers and professionals
every year. We also provide training to over 2,600 professionals
each year. Our website is viewed by nearly 300,000 unique visitors
and nearly 1000 carers are members of our website forum.
1.4 Carers UK has offices in Wales, Scotland
and Northern Ireland. This response reflects the views of the
organisation, UK-wide.
2. SUMMARY
2.1 The Government must ensure that carers
are consistently and visibly identified throughout legislation,
policy design and delivery, and given a strong voice throughout
the proposed HealthWatch bodies to ensure that commissioning is
responsive to carers' needs.
2.2 Carers UK welcome the emphasis on outcomes
and public health in the NHS White Paper, which we believe that
this could support better integration and innovative commissioning
across of health and social care services. We urge the Government
to ensure carers are a priority in public health, and believe
that outcomes must be assessed across health and social care services,
2.3 Carers UK has concerns about the pace
of reform, with haste making the inclusion of often excluded groups
more difficult.
3. CARERS AND
THE NHS
3.1 Carers provide the bulk of social care
in the UK, far outstripping private and statutory providers and
outstripping paid care workers across health and social care by
a ratio of 2:1. Their unpaid role is worth at least £87 billion
a year. Without the care carers provide health and social care
services could not withstand the demographic pressures of an ageing
population.
3.2 There are three ways in which the NHS
is important to carers:
— In being involved in, helping manage
and deliver the care of someone with a disability, illness or
who is frail.
— The level, timeliness, appropriateness
and quality of care of a patient directly impacts on a carer's
life.
— Carers as patients themselves.
3.3 As a result, Carers UK believes that
it is crucial that carers views and needs are taken into account
in the design and delivery of health and social care services.
3.4 The 2008 National Carers Strategy described
how carers should be treated as "expert care partners"
by services—consulted, respected and supported. This recognition
of carers' role is critical to ensuring that the NHS is responsive
to families' needs, and works effectively to support ill, frail
and disabled people wherever they are receiving care.
3.5 Progress has been made. In particular
Carers UK welcomed the prominent inclusion of carers in the NHS
Constitution, where previously clinicians and patients were seen
as the only stakeholders. However we are concerned that the papers
accompanying the White Paper Liberating the NHS mark a step backwards
in this "mainstreaming" of family care.
3.6 Whilst we were pleased to find carers
included throughout the White Paper itself, we were disappointed
that this visibility was not maintained in the accompanying consultation
papers on commissioning and outcomes. Given our concerns about
the impact on carers of GP-commissioning, it is crucial that the
Department of Health ensures that provides leadership in mainstreaming
carers into all levels and areas of policy design and delivery.
4. CLINICAL ENGAGEMENT
IN COMMISSIONING:
EXPERTISE, ACCOUNTABILITY
AND VARIATION
4.1 Carers UK believes that GP commissioning
could play a key role in knitting together public health and health
and social care services. GPs are extremely well positioned to
deliver early support to families taking on caring responsibilities,
long before they might consider accessing support from social
services, which can sometimes only occurs breaking point is reached.
As a result, if responsive to carers' needs, GP-commissioning
could help commission health, public health and social care services
to prevent caring relationships becoming unsustainable.
4.2 However Carers UK has some concerns
that the scale and pace of restructuring and change within the
NHS may disrupt services which carers are heavily dependent on,
and will limit the capacity for any new system to be responsive
to the needs of carers, who are already too often seen as a low
priority. We strongly recommend to the Government that the reform
agenda is slowed down to ensure that the new systems and structures
are properly tested and that all those involved in the new structures
have the skills and resources to be able to commission and deliver
high quality care.
4.3 Carers UK also have concerns as to whether
GP consortia would have the time, knowledge and resources in order
to be able to commission specialist services to support families
who care. Experiences from Carers UK's membership and our Adviceline
show that GP's awareness and prioritization of carers is extremely
variable. A lack of knowledge of social care and specialist services
and an exclusive focus on patients, rather than wider families,
could hinder service responsiveness to carers' needs.
4.4 To ensure effective and empowering commissioning
Carers UK believes that GPs would need additional training in
commissioning, given the different skills and knowledge requires.
4.5 The £150 million given to PCTs
in the 2008 National Carers Strategy to fund carers' breaks highlighted
how this variability in prioritising carers exists in the current
system. Research showed that around 80% of PCTs failed to spend
the money earmarked for carers, on services to support them. To
an extent this also represented a failure for national Government
to deliver clear guidance, as some PCTs indicated that they were
unaware of the funding within their allocations, however a substantial
proportion of PCTs were aware of the funding but had chosen to
spend it on other services, or on deficit reduction.
4.6 This occurred despite vocal campaigning
by Carers UK, local carers and carers groups, showing that the
accountability structures within the NHS respond poorly to commissioning
decisions which are not in line with local public need and view.
This reflects the need for strong accountability throughout the
proposed structure of the NHS to hold to account commissioners
who do not automatically prioritise carers.
4.7 Carers UK believes that a strong voice
for patients, carers and the public, is vital to hold the NHS
to account, ensure commissioning is effective and empowering for
excluded groups, and to act as an early warning system where services
are failing and to work in partnership to help design and deliver
better services. We welcome the fact that the Government has kept
the main elements of LINks within the new proposals, but also
taking on board the role of the Independent Conciliation and Advocacy
Services.
4.8 Ensuring effective accountability also
means that the proposed HealthWatch bodies must not be involved
in commissioning decisions. Instead they should be used as vehicles
for reading where concerns are in the local community. Ensure
that wider consultation and information gathering taken through,
user and family groups, a plurality of views and experiences.
4.9 We further recommend that carers are
clearly articulated throughout the legislation in the statutory
make-up of any Boards or key decision-making structures and duties
to consult. Where this has currently be present in legislation,
it has helped to design better services and carers have been better
included.
4.10 The structure set out by the White
Paper places a significant amount of power in the NHS Commissioning
Board which, as it is currently set out, does not really seem
to be accountable to the public, but of course remains accountable
to the Secretary of State.
5. OUTCOMES,
INTEGRATION OF
HEALTH AND
SOCIAL CARE,
AND PUBLIC
HEALTH
5.1 Carers UK welcomes the fact that the
White Paper proposes a focus on outcomes for the NHS, driven and
we welcome the Government's objectives to reduce mortality, morbidity,
increase safety and improve patient experience and outcomes for
all.
5.2 It is crucial that outcomes measures
look at carers' own needs and priorities. This is important to
drive change throughout the NHS and to ensure that they will be.
Carers UK strongly believes that the outcomes set out in the 2008
Carers Strategy ought to guide service design. Our experience
shows that ensuring that carers can lead lives of their own and
do not fall into ill-health or poverty should not simply be seen
through the prism of traditional services. These outcomes are
what matter to carers, rather than the way they are achieved.
5.3 Carers UK believes that more outcomes
should be shared between health and social care, including and
incorporating outcomes for carers which are set out by the Care
Quality Commission. This would have several different results.
It would help to integrate health and social care and would help
to align goals between professionals and different bodies. It
would also help to strengthen and enhance the new public health
and well-being roles for local authorities.
5.4 For example, the speed and quality of
treatment for the people they care for have impacts on carers'
lives. The longer operations or treatments are delayed, the more
disabled a person can become and the more input a family has to
provide again, potentially leading to loss of paid work, increased
stress and health problems—both mental and physical. These
opportunity costs could be measured by commissioners to look at
where investment needs to be made to avoid these costs.
5.5 Shared health and social care outcomes
could encourage creative and more effective commissioning to support
carers. This might entail traditional services, like practical
care support or carers breaks, but it might also involve innovative
multi-disciplinary solutions, for example training in lifting
to prevent carers injuring themselves, or telehealthcare to monitor
patient health at home which reduce the need for carers to take
time off work to take elderly or disabled relatives for check-ups.
5.6 Existing examples of integration of
health and social care budgets, as in Torbay, show that a legislative
structure which enables flexibility and integration between health
and social care already exists. The barriers are not legislative,
and Carers UK believes that Government has a role to play in promoting
examples of good practice.
5.7 Carers UK also welcomes the fact that
public health will be moving to local authorities with ring-fenced
budgets. Carers must be seen as a key priority in public health—promoting
good carer health by commissioning services to prevent carers
from reaching breaking point through a lack of practical support,
advice and information. We recognize that several local authorities
and health bodies have been working in this way for some years
and we believe that there are many opportunities to creatively
join up services to work better for patients and carers. As a
result, we believe there should be a legal duty on GP consortia
to promote health and wellbeing of carers, alongside patients
and the public.
5.8 Carers UK also recommends that the outcomes
includes carers in the patient reported outcomes. This would help
to improve the delivery of care throughout the NHS. First of all
it would value and recognize their views and their roles by asking
several key questions which matter to their lives based on how
they found the service. It would also help to determine whether
there are any unwanted trends or perverse incentives in service
commissioning which mean that carers are more likely to lose employment,
for example, when they are not given sufficient support on discharge.
Finally, carers may also be more likely to raise issues if there
is unsatisfactory treatment helping to build better systems and
support.
6. HOW WILL
THE PROPOSED
SYSTEM FACILITATE
SERVICE RECONFIGURATION?
6.1 Carers UK has some concerns about the
impact on the NHS of the wider roll-out of personal health budgets.
GP commissioning of private sector services could mean that certain
parts of the NHS, particularly specialist services, are not economically
sustainable—destabilising the NHS.
6.2 We also believe that there needs to
be some regional oversight in order to deliver economies of scale,
share knowledge and ensure that specialist services, for example,
are effectively commissioned across a particular geographical
area. This is particularly important for certain conditions where
it is likely that there will be very little specialist commissioning
knowledge about a condition.
October 2010
| 
