Memorandum submitted by Carers UK (H&SC 2)
Health and Social Care Bill
Evidence to Public Bill Committee
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.