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Is 2015 the year when carers’ rights will catch up with carers’ responsibilities?

16 January 2015
Heléna Herklots

Heléna Herklots
Chief Executive, Carers UK

Our country relies heavily on the unpaid work of 6.5 million people, caring for family members and other loved ones. It may be caring for elderly parents, or a partner who’s had a stroke, or a disabled child. This unpaid care equates to £119 billion every year, and these responsibilities come with significant costs for many carers – from suffering physical and mental ill-health, to having to give up paid employment to struggling to make ends meet for many years because of the costs of caring. 

The 2011 Census showed that full-time carers (caring for over 50 hours a week) are twice as likely as non-carers to be in bad health, and in our State of Caring survey (2014) of over 5,000 carers, half stated that they were affected by depression after taking on a caring role. Just over half said they were struggling to pay household bills or to make ends meet.

Quite simply, without all the work that carers do, our NHS and social care services would collapse. Individually, carers shoulder enormous responsibilities – for the care, health and well-being of their loved ones; but collectively are shouldering the very sustainability of our health and care services. Carers have the responsibilities, but what about the rights?

The year ahead could bring with it a momentous and permanent shift in the recognition of carers, and in the rights that carers can exercise. In England the Care Act comes into force in April, bringing with it new rights for carers. It introduces a duty on local authorities, following an assessment, to meet a carer’s eligible need for support. Local authorities will receive additional funding from central Government in recognition of these additional rights and responsibilities towards carers totalling £104.6m for 2015/16.

The legislation is vital, but not enough on its own, particularly at a time when local councils are seeing their budgets for local services further reduced overall. So we will need to be vigilant about how these rights are introduced, doing all we can to support those in local authorities responsible for making these rights a reality but also being ready to challenge when needed.

The NHS has made important steps forward in recognising and supporting carers through the NHS England Commitment to Carers launched in May 2014 which has eight priorities (and no less than 37 commitments!) including raising the profile of carers, service development, and commissioning support. The NHS 5 Year Forward View published in October last year states that it recognises carers’ contribution to the sustainability of the NHS, and commits to finding new ways to support carers and building on the rights in the Care Act.

But we know that carers’ current experience of the NHS is patchy. Amongst carers responding to our State of Caring survey 19% felt their caring role was ignored and not recognised by health professionals, but 20% felt their role as a carer was valued and recognised by hospital staff.  Amongst carers who were caring for at least 50 hours a week, 84% had a GP who knew of their caring responsibilities but most of these carers (71%) said that their GP didn’t do anything differently to accommodate them.

Across the UK there are policy and legislative changes underway or under consultation which could benefit carers, but there are risks ahead too. In Wales the Social Services and Wellbeing Act comes into force in April 2016 and will introduce similar rights to assessment and support from local councils as in England. However, the Act also repeals the relatively new Carers Strategies Measure (2010) which means that local Health Boards and Trusts will no longer be the lead authority for strategic planning for carers, a retrograde step. The work on regulations and guidance over the coming year will be crucial in ensuring that the recognition and support for carers is improved.

In Scotland carers’ issues seem more prominent in the political arena - for example there is now an annual Carers Parliament to which carers from across Scotland attend and have the opportunity to debate with senior politicians. Last year the Scottish Government consulted on legislation to extend the rights of carers and improve support, and we now await a Carers Bill.

In Northern Ireland ‘Transforming Your Care’ aims to reform health and social care with more focus and a shift of resources to providing care and support in communities and in people’s own homes rather than hospitals and residential settings. However, progress has been slow, for example, on increasing access to self-directed support. This year proposals are to be developed on reforming adult care and support including paying for care. 

In this General Election year, we will be looking to all political parties to recognise the enormous contribution that carers make to families, communities, society, and to the economy. 6.5 million carers show that we are a much more caring society than some would have us believe. But we need to do much more to care for the carers. The responsibilities that carers have need to be matched by enforceable rights that result in improved recognition and support. Some of the elements are in place to make this happen, and the year ahead will be a crucial test of the political will to make life better for carers.

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