Memorandum submitted by
Carers UK (H&SC 2)
PARLIAMENTARY BRIEFING
Health and Social Care Bill
Evidence to Public Bill Committee
November
2007
About Carers UK
Carers UK
is an organisation of carers set up to improve carers' lives. We achieve this
by:
· Campaigning for the changes that make a real difference
for carers
· Providing information and advice to carers about their
rights and how to get support
· Mobilising carers and supporters to influence
decision-makers
· Gathering hard evidence about what needs to change
· Transforming the understanding of caring so that carers
are valued and not discriminated against.
As well as
an individual membership, Carers UK also has a membership of Associates, made
up of local carers organisations, local authorities etc. Through this wider
network we are in touch with around 1.3 million carers. We run a specialist
information and advice service, Carersline, which advises around 20,000 carers
every year.
Key issues for carers in the Health and Social Care
Bill
1. Carers must have a high profile in the new
regulator
At the moment the Bill does not
mention carers at all. We believe they should be explicitly recognised as key
partners in the provision of health and social care services with the Care
Quality Commission given duties to involve them alongside patients, users and
the public. The health and social care system relies to a huge extent on the
unpaid care provided by families, friends and neighbours. There are more carers
than there are health and social care professionals and the replacement cost of
the unpaid care they provide is £87 billion, equivalent to the budget for the
NHS in England.
The UK's six million carers are
gradually receiving a higher profile politically, but they are still largely
ignored by formal services and have too few rights. Carers UK believes carers
should be seen as 'partners in care' and given the recognition and support
(practical, financial and emotional) that they need. Carers UK carried out a
survey of 3,000 carers in January 2007 and they told us that their top priority
for change was to improve the recognition they are given by
professionals.
The Government is currently
reviewing the National Carers Strategy, to be published in Spring 2008, and has
announced a new Standing Commission on Carers. The creation of the Care Quality
Commission provides an opportunity to embed a recognition of the role of carers
in the new body, so it can play its part in delivering the Strategy's ten year
vision for carers.
2. The
new body must champion social care
In recent years the Commission
for Social Care Inspection has built up
valuable expertise on carers' issues and on social care more broadly.
CSCI has played a welcome role in championing social care, giving reliable
evidence on the quality of services and providing a strategic lead for the
whole sector in conjunction with Social Care Institute for Excellence.
It is essential that the new body
is given sufficient power and resources to maintain a focus on social care and
that it is not dominated by health. The structure created by this Bill must
ensure that both health and social care interests are given equal weight and
importance.
In producing its reports such as
'The state of social care in England' in January 2007, CSCI has provided real
direction to the sector and has highlighted areas where implementation of
policy has not been successful, as well as providing concrete evidence about
the performance of services. It is important that CSCI's role in providing reports
to Government, professionals and the public isn't lost.
One of CSCI's key functions is
that of providing impartial and objective information
to potential users of social care services and their families, not least since
one-third of such people already fund their own care. This role must be
continued and ideally expanded. It must also link effectively with the National
Helpline for Carers that the Government is setting up to provide consistent
information to families in need of care services.
3. The
new body must support the modernisation and personalisation of social care
The Care Quality Commission
should play a central role in supporting the reform of social care in the
following areas:
Control:
the views of service users and carers must be given greater weight. This could
begin by involving them in the creation of the CQC and in its day-to-day
activities. The views of patients, service users and
carers should be specifically included on the face of the Bill to emphasise that the Care Quality Commission has a particular
duty to involve these people.
Inclusive: the CQC must be
a resource for all service users and carers, not just those using statutory
services. Across the whole of social care there needs to be a bigger focus on
self-funders, and this should be reflected in the regulation of the sector.
This group continues to be left out of discussion around social care services.
The Government is still
considering how best to regulate primary care and will consult with
stakeholders. This will be vital since most carers have contact with primary
care and it could be an important way to drive up standards of support.
Personalisation:
regulation should support choice and greater personalisation of service.
Developments like direct payments and individual budgets are welcomed by
carers, but for them to work well there needs to be improved information and
support.
Focus
on employment: the CQC must support social
care services in focusing more on supporting carers to work. Currently, the 4
million working age carers are being failed by the system. Evidence from Carers
UK's recent 'Employment, Carers and Services' research, carried out by the
University of Leeds, shows that over 40 per cent of those caring full time and not in work say that they
cannot return to employment because of the lack of services available. The
current systems do not support carers at key stages of their lives.
Carers have reasonable expectations to a life beyond their caring role -
enshrined in the Carers (Equal Opportunities) Act 2004 - and we should be
fulfilling them
4. The NHS
needs to recognise carers
There
is a continued need for a stronger focus on carers within the NHS. The NHS will be benefiting from a 4%
increase in its funding (announced in the CSR) and yet a great deal of the
reforms are predicated on the basis of people caring for people at home by
relatives and friends. Yet carers often feel ignored and invisible
to the NHS. Carers should be a priority for spending from the NHS budget
as well as social care and should be treated as partners in care.
Carers UK is calling for a duty on public bodies to promote equality
between those with caring responsibilities and those without, as already exists
in Northern Ireland. This would impact significantly on the NHS. The Equality
Bill will not now be introduced in this session but we need an urgent debate
about how carers might be included in this forthcoming legislation. (This
protection would also extend to employment and the provision of goods,
facilities and services).
Other issues in
the Bill
Liable relatives rule
Carers UK welcomes the
proposal to remove the 'liable relatives' rules whereby spouses are liable for
care payments of their husband or wife. This rule causes distress and financial
worry for many carers and it is out of step with 21st century
society.
Extension of direct payments to those lacking
capacity
Carers UK welcomes the proposal to extend the use of
direct payments to those who lack capacity. This will extend choice and
flexibility to those who have been excluded to date. However, like all users of
direct payments, both the service user and carer must be given sufficient
support to manage both the payments and the services they choose to purchase.
December 2007
