Government's upcoming reforms must take the needs and contributions of unpaid carers into account says Heléna Herklots
We will all need care or provide care for loved ones at some point in our lives – it is an issue for all of society and all parts of government.
As care and support for older and disabled people rises up the political agenda, decision-makers and the public are confronted with an array of stark statistics on the rising demand for care – with the number of people over 80 to double by 2020, 11 million people alive today expected to live to 100, the number of adults with learning disabilities to rise by a third by 2030 and the number of carers by 50% in the next 25 years to 9 million.
But these statistics do little to shed light on what this care challenge means in practical terms or what solutions might look like. They also fail to truly reflect how demographic change is bringing about significant shifts in all of our lives – not just the lives of people using social care services.
Family structures are changing to meet multigenerational caring responsibilities as parents, grandparents and great-grandparents juggle childcare and 'eldercare' between them. Parents of disabled children are caring long into retirement, which can mean juggling support for grown-up children with caring for older parents. Workplaces are adjusting as increasing numbers of staff need to manage 'distance caring', often by phone and email, for older relatives who are at the other end of the motorway; more and more days off work are taken by staff taking partners with long-term conditions or older relatives to medical appointments, or having to provide care when care services let them down. Increasing numbers of people are suddenly finding themselves exposed to the challenges of navigating the benefits system, power of attorney, and getting community care assessments from local councils.
All these issues reflect how 'cross-cutting' the issue of care is, and how important it is to support families to care. Alongside the NHS and local authority social care services, the care challenge impacts on employers, the benefits system, pensions, childcare, transport, communications technology, the legal system … the list goes on. As a result, the solutions to the current crisis in care must involve stakeholders and government departments in all these areas, and the forthcoming social care white paper must reflect this.
A white paper that is supported across the government will also help to shift the debate away from the view that social care is about 'managing a demographic problem'. We need a bigger exploration of how public services, care providers, businesses and workplaces must adapt to fit around the changing shape of modern families. But we must also make the most of the opportunities changing demography presents – improving workforce participation by helping families to balance work and care, stimulating growth in the care market and innovation in care technologies.
However, without the contribution of the UK's 6.4 million unpaid carers health and social care services would simply collapse. As a result, supporting carers must be a central part of reforms.
Caring often comes as a shock, and the inability for many care services to get suitable support in place quickly leads to many carers caring round-the-clock without support; endangering their physical and mental health, personal relationships and often forcing them to give up work. And this isn't a small group of families; two million people take on caring responsibilities for an ill, frail or disabled friend or relative each year, and this means that around three in five of us will care at some point in our lives.
It's not easy to get information and advice on care, and we need comprehensive independent advice and information services – delivered nationally and locally, so that families always know where to go to get the information they need. We also need more certainty around the costs and levels of care, regardless of where we live. The current system delivers perverse incentives for older and disabled people and their families to put off getting support for as long as possible - because they know they may face huge care bills in the long-term and want to avoid running down their savings by buying lower-level care services. This puts pressure on family members to provide care without support, and also often leads to people who need care going without it, and risking a deterioration in their condition. This doesn't make sense for anyone, and a cap on lifetime care costs would allow people to plan better and encourage them to invest in preventative support where they can. We also support calls for more 'portability' in the care system – giving families more confidence that moving from one council area to another won't lead to the collapse of their package of care as they wait for a reassessment from their new council.
What carers need most is action– now. It has long been clear that the social care system needs root and branch reform, and families have already waited too long. The forthcoming white paper on social care must be the catalyst for the change that is needed across the government. We need a care system fit for the 21st century.
Heléna Herklots is chief executive of Carers UK