What is the issue?
Over 50 years ago, people providing unpaid care for family and friends had no rights and no entitlements. That was precisely why Carers UK was set up and we started to campaign for these rights based on what carers wanted to see and what they needed. They felt very strongly that rights would lead to better recognition and support, but it should also provide a concrete basis for challenge if they were overlooked or left without support.
Every country throughout the world relies on families and close friends to provide support. But without rights, carers can quickly be overwhelmed. Rights provide a balance and a basis on which families are able to ask for more help so that they have the opportunity of living a more fulfilled life. In our State of Caring Survey 2022, 60% of carers told us that they would like better understanding and recognition of unpaid carers from the general public.
Carers need rights in key areas. They are twice as likely to face ill health as a result of caring. They are not always recognised by the NHS or by social care, and yet the care they provide is a staggering £193 billion per year – equivalent to spending on the NHS – and even more during the pandemic, the equivalent to £530 million every day.
1.3 million carers are in poverty and many have reduced pensions in retirement as a result of caring. Whilst Carer’s Allowance is the lowest benefit of it’s kind, it protects carers’ National Insurance contributions.
Without the recognition or support from employers or the right health and social care services many carers make the decision to leave their paid jobs. Unfortunately, around 600 carers give up work every day.
Carers also feel that they are invisible in society and can often feel taken for granted. The majority of carers say that they do not have a choice about caring. Many say that they want to continue, but also need some support. A third of carers (33%) felt that their need to take regular breaks from caring was not properly considered in the Carer’s Assessment process or in the support they receive.1
Carers’ rights really matter, whether it’s related to their finances, health and care, employment or pensions or discrimination.
What needs to change
Whilst we have robust social care rights frameworks for unpaid carers across the UK, the underfunding of care can often mean that these rights are not delivered in reality. There are key rights that don’t currently exist, but we’d like to see in place, like rights to a break.
The NHS still has fewer rights for carers compared with social care, despite the fact that it could not function without the support of unpaid carers.
Carers’ benefits need to be significantly improved, as do mechanisms to improve carers’ finances and reducing the cost of caring. Carers need greater rights and support around pensions as well as recognition of the longer term impact of caring.
Rights in the workplace need to continue to evolve and improve, starting with unpaid Carer’s Leave, but ideally moving to two weeks paid Carer’s Leave and a longer period of unpaid leave, mirroring other countries around the world.
Housing can be more difficult and challenging for carers, with some carers even facing eviction after years of caring, with no hope of being a priority for housing. This is where rights could make a big difference to carers.
With technology increasing in importance, the right to have access to technology, but equally the right to access support not using technology needs to be in place.
The Human Rights Act 1998 to date has been an important framework for considering the right to family life. However, carers face many inequalities and yet are not fully recognised as a protected characteristic and public bodies are not under a responsibility in England, Wales and Scotland to promote equality of opportunity.
What Carers UK is doing
Carers UK is campaigning on all of these areas to bring about better rights, for carers that are also well funded, well delivered and embedded in everyday practice. Our campaigns encompass:
- Health and wellbeing
- Caring as the 10th protected characteristic
Carers' voices and experiences shape and evidence our campaigns and work with others to ensure that better rights are secured.
But once those rights have been gained, we work with a range of partners to ensure the best delivery of those rights in practice to ensure that those rights become a reality.
Young carers’ experiences of poverty in Northern Ireland
Research from the Carer Poverty Commission NI shows the damaging impact of poverty on child and young adult carers.