Ann's story: “I thought I was entitled to care”

Our recent report with The King's Fund examines the impact of local authority cuts on the social care sector. Here, Holly Holder examines the human cost of these cuts, drawing on the story of Ann, who we interviewed for a companion report commissioned by The Richmond Group of Charities.

Blog post

Published: 16/09/2016

These are bewildering times for the millions of people who depend daily on social care services and the NHS. The threat of strikes, declarations of imminent collapses of both services and the continual shifts in what people are or aren’t entitled to – it's no wonder that people are confused. Our report, Social care and older people: home truths, published yesterday with The King’s Fund, discusses the sustainability of the sector and provides fresh evidence about the impact of budget cuts at the local level.

Also published yesterday was a report commissioned by The Richmond Group of Charities, which explores the stories of seven people and their experiences navigating the NHS and social care systems.

It is clear that many people do not draw a distinction between the two sectors. This leaves them ill-prepared for the realisation that, in the majority of cases, social care is paid for by the individuals themselves or else provided by a family or friend. Local government support is available only to those who have very high levels of need and very little money or assets. And with less money going into local authorities, the pool of people who receive public support is shrinking. 26 per cent fewer people received support in 2013/14 compared to 2009/10, which equates to around 250,000 older people.

Moving between the two sectors introduces new, complicated processes for individuals and can cause long delays, particularly when leaving hospital to start a new or different package of social care. This increases the pressure on already stretched hospitals, some of whom have very limited options available to them. Access to intermediate care is unevenly distributed across the country and, for hospitals trying to create more capacity, success will be dependent on being able to recruit care staff. 

Personalised care and giving individuals more control over their support have been high up on the policy agenda for a number of years now and feature heavily in the Care Act 2014. However, the care provided is not always flexible enough and personal budgets can be difficult to administer. These policies also assume that there is an adequate range of choices available to people. As our Home Truths report and Ruth Thorlby's blog outlines, care is increasingly becoming dependent on where you live and the affluence of the local area – and whether or not you are paying for your own care.

It's clear that there is a very human cost to social care cuts. Here's what one person told us in the Real Lives report.

Ann’s story

Ann is one of the 1.3 million carers in this country aged 65 and over, grappling with her own health problems while also looking after her husband of 58 years, Cyril.

Having previously served as a district councillor, it's safe to assume that she knows how the system should work. But, finding herself in a crisis and in need of support, even she suffered the consequences of a fragmented care system.

After an operation to fix a broken ankle, Ann was stuck in hospital waiting for home care to be organised.

“They now wanted the bed, they wanted to get rid of me. I wanted to be home but they said I couldn’t come home. I thought I was entitled to a week’s care but they said: there isn’t any care at the moment. They are in crisis. They haven’t got enough trained-up people." 

Her experiences while in hospital made Ann feel as though no one had taken the time to understand her situation. They suggested to her that she should go into a care home but then, as she pointed out, who would care for Cyril?

“You feel nobody cares, you feel like a package.”

She was told that she would be able to organise her own temporary support when she was discharged, but as Ann told us, this only works if you know “who to choose, or where to go”. Living in a small village, she notes that there isn’t much of a choice among providers and that people have to pay more for support because of the distances carers are travelling.

And when she was eventually given some support from the council, it was not flexible to her needs. Ann wanted to use the money to ensure the ongoing support of the unpaid carers who were already contributing to Cyril’s care. The council refused this suggestion and instead offered to send their own carers, which would cost more money. In the end, Ann turned down the council’s offer of support and decided instead to carry on using her own local networks.

Like others we spoke to during our research, Ann thinks families should support one another when in need and does not assume that the state should pay for everything. However, she thinks that carers should be better supported. She wonders how much it would have cost the government if, over the years, she hadn’t cared for three family members in addition to the continuing support she gives to her husband. At times, she has felt depressed and as though nobody cared.

Overall, however, she remains remarkably positive and committed to improving her and Cyril’s lives.

“I’m a fighter, I’m really trying to make the situation better.”

The new normal?

Ann’s story is by no means unusual. Many older people across the country are grappling with a system that is buckling under pressure, difficult to navigate and increasingly restricted in access. As an older carer herself, dependent on support from family and friends, she describes her situation as ‘precarious’. The word could be aptly used to describe the whole sector.

Suggested citation

Holder H (2016) 'Ann's story: “I thought I was entitled to care”'. Nuffield Trust comment, 16 September 2016.