The Caring & Family Finances Inquiry was established in January 2013 to examine the impact of an unprecedented combination of rising living costs and far-reaching changes to social security.
Over the past year, the Inquiry has gathered evidence from public polling, survey work with almost 4,000 carers, case study modelling and 15 evidence sessions with families across the UK.
The report shows that as the number of carers, the amount of care they provide and the disadvantage they face continue to grow, the support carers receive from benefits and social care is either failing to keep pace or being reduced.
“Stress levels are through the roof”
Among the case studies included in the report is that of Leslie and Darren.
Leslie and Darren have four daughters – Gabrielle, 19, Olivia, 17, Fleur, 10 and Amélie, 9 who has CHARGE syndrome, a rare condition resulting in multiple and profound disabilities.
Amélie’s health and nursing needs are high and she needs care around-the-clock. And the costs associated with this care is high; keeping the house heated year round, running oxygen cylinders and medical equipment day and night, high water usage that results from extra bathing, clothing, bedding and washing and incontinence, have resulted in massive debts for the family.
Despite having a full-time income supported by additional hours, the family are struggling with thousands of pounds of debt. Amélie’s frail health, in particular the need to protect her from cold and damp, have led to quadrupled utility bills. They owe £5,000 on outstanding electricity bills, £3,500 on gas, £2,000 on water bills and have accumulated council tax arrears of £2,500
Darren explains: “Amélie is absolutely fantastic, she’s an absolute joy. But stress levels are through the roof. Amélie needs care 24-hours-a-day, every day and because of her medical needs and the lack of professionals who also have the sign language skills to communicate with Amélie, it is almost impossible to get respite care. We have battled to get direct payments from the council to buy-in care support and have been given the equivalent of 16 hours at £7.20 an hour. If we could find the right care services, I very much doubt it would be available at that rate.
“But if I could change anything it would be the financial burden. Even if everything in the house is going well, there is still that financial worry hanging over us. I think people assume that there are loads of benefits supporting families like us. But that’s not the case at all. Now Leslie works full time with extra shifts and I receive a Carers Allowance of £58 a week. I’d love to work, but show me the job I could do alongside the care Amélie needs.”
Cut in support
The Inquiry also reveals that, despite rapid rises in the number of families providing care to loved ones, these unpaid carers face a £1 billion cut to financial help in the next four years, due to changes in Carer’s Allowance and Council Tax Support and the introduction of the ‘bedroom tax’ and benefit cap.
Heléna Herklots, Chief Executive of Carers UK, said: “Those caring, unpaid, for loved ones save society vast sums, but at huge personal cost – a cost this Inquiry shows is pushing families to the brink. Caring is often a dual blow, with household incomes hit by reduced earnings, and bills rising as a result of the extra costs of ill-health or disability.
“With an ageing population, more of us will care for loved ones – yet a blizzard of cuts to social care and benefits mean there is less and less support available. This is unacceptable and unsustainable. This country’s carers are being badly let down. Unless the government acts to stop the cuts to support for carers there is the risk families will be pushed to breaking point and left unable to care for their own.”