Who cares for the carers?

One in five adults provide it and it is estimated that across the UK during the pandemic they provided care worth £530 million per day - £193 billion a year. In Northern Ireland the figures were £19million per day and £6.93bn for a full year, according to research from Carers NI.

The numbers of people involved are every bit as staggering. It is estimates that 20% of the general public aged 18 and over are currently caring. Again, in Northern Ireland that equates to 290,880 carers in Northern Ireland.

That compares to the 64,000 staff who work in health and social care.

It is clearly a precious resource. Yet our dependency on these carers is seldom discussed. They are taken for granted, exploited, even abused. This needs to change.

Most people don’t seem to realise that the chances are they will end up as carers themselves – there’s a 2 in 3 chance of people providing care within a lifetime. Women have a 50:50 chance of providing care by the time they are 46 and men by the age of 57, 11 years later. So people should not be complacent about this. They might not think this will concern them, but the chances are it will.

Caring can happen to any of us at any time, when we might provide unpaid care to a relative, close friend or neighbour because of chronic illness, including mental ill-health, dementia, disability, or older age. The responsibility might emerge overnight with an accident or sudden medical emergency or gradually as a condition develops over time. It can help their family friends or neighbours live longer in the community.

Most provide care unstintingly, after all who would not help someone they love? And that’s precisely why they should not be taken for granted: there is always a price to pay for it, whether it be to the carer’s health and wellbeing, their ability to be in paid work, and the toll it can tell on relationships, income and finances.

A genuinely caring system cannot be rooted in the exploitation of others, no matter how willing they are to help.

At the very least carers need to be provided with respite from the stresses and responsibility of providing care. Yet during the pandemic the necessary support was cut dramatically.

Figures provided to Alliance MLA Kellie Armstrong last week, provide a stark illustration not just of the cuts but of the failure of the health service to restore them in the Belfast area.

In the first quarter of 2019, before the pandemic 57,282 attended day centres. This fell to 13,789 in the same period of 2021, the second year of pandemic. However this year numbers for the same period stood at just 20,686. That’s a drop of almost two thirds.

Carers NI figures also show that the proportion of unpaid carers providing significant care ie more than 20 hours per week, has increased by 42% since October 2020.

No wonders carers are reporting increasing fears about having to cope with the stress and responsibility of caring and its negative impacts on both mental and physical health.

Their selfless care for others does not cost the health service a penny it is they themselves that pay the price.

Little wonder then that resentment grows as they continue to experience barriers to the kind of respite they so richly deserve long past the point where other services are back to normal.

It is not at all unreasonable for Carers NI to be demanding the full reopening of day services, short breaks and respite support to pre-Covid levels in every Health Trust in Northern Ireland. Too many carers have now been pushed to exhaustion by our collective neglect of them.

Many carers now get needs assessments which correctly identify their needs only to receive no additional support from the system.

According to Carers NI: “For too long, the local social care system has been letting our carers down. It has not delivered the high quality replacement care they need to take a proper break from caring and engage in the daily activities many of us take for granted, such as tending to their own health needs or going to work.”

The landmark Power to People report recommended the introduction of a legal right to support for unpaid carers once their needs have been identified. This needs to be implemented without further delay.

Unpaid carers also face additional costs due to the cost of living crisis. For example energy costs are often higher to keep patients warm, food bills are typically higher because of nutritional needs as indeed will be travel costs for medical appointments.

In 2019 before the cost of living rises we were reaching crisis point with 40% of carers saying they were struggling to make ends meet.

And in February 2022 carers NI surveyed the pressures carers were under:

• 67% said their financial situation had worsened;

• 96% reported that their energy bills had increased;

· 45% were spending more on food and drink;

· 65% had seen the cost of care services increase, and

· 47% were unable to afford their monthly expenses.

To make matters worse many have had to reduce their hours of work or even give up their job .

Caring is often a round-the-clock-job, and carers often find it difficult to provide practical and emotional support for their loved one, manage appointments, maintain their home and go to work all at the same time. Carers NI estimate that, in 2019, nearly 130,000 people in Northern Ireland either gave up work, or reduced their hours to part-time, in order to care for someone.

Close examination tells us that the sacrifices carers make are simply taken for granted. They might care unselfishly for others and be prepared to make sacrifices for them. Whether or not we care enough for them is a matter for debate.