Carers rarely know their rights – the care green paper must change this
A national entitlement for social care would inform carers of their entitlements from the outset, and undo a lot of confusion
No care system in the world functions without the support of families. This vital relationship will continue to be relevant as the number of people needing care increases. However, the relationship between the individual, family and the state needs to change if we are to avoid heavy economic and personal costs to carers and their families.
There are six million people currently providing care, unpaid, to disabled, chronically ill and frail people. These carers outnumber the health and social care workforce two to one, and they make an enormous positive contribution to disabled and older people’s lives.
Yet caring can also turn lives upside down overnight. No one expects their adult son, who has just started his new job, to have a car accident that leaves him paralysed and require intensive care for the rest of his life. No one wants their mother to have dementia and slowly lose the ability to do simple tasks that people take for granted, turning parent/child relationships on their head.
What often shocks people most is the complicated world that surrounds disability and ill health. It is difficult to find information about the support available – which can be vastly different depending on where they live – and the complexity of the system leaves many carers feeling that they are passed from pillar to post.
Carers UK wants to see the whole system changed to one that puts carers and the people they care for at its heart, rather than expecting them to fit around the system. Disabled, older and chronically ill people and carers should not be living in financial hardship. We need a society that treats them equally and fairly. They need opportunities to work, learn and enjoy hobbies, and to be in the best physical and mental health possible.
What carers want is fairness, equality and transparency. We need to make people’s rights and entitlements clear. That is why Carers UK is calling for a national entitlement for social care so that people know from the outset what they are getting.
We need social care to respond to our changing economy, where the workforce is shrinking relative to the older retired population. The majority of carers are of working age, and one in eight workers juggle work and care.
The lack of good quality care arranged around work is affecting our economy right now. If we do not get this system right, we risk losing the positive contributions made by carers and increasing the negative sides of caring. Radical reform to the care system is not just a moral necessity but an economic one too.
• Imelda Redmond is chief executive of Carers UK