Care for older women: 'I've got no one left to help me. And I'm scared'

http://www.guardian.co.uk/society/2012/feb/29/care-older-women-delivering-dignity

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Mary was told recently that she had outlived her time. She agrees. Living alone in a remote area of Cornwall, the deaf and partially blind 88-year-old has attended the funerals of all her friends and most of her family. Her only child, a son, lives nearly three hours' drive away and is rarely able to visit.

"I'm old and I'm dreadfully vulnerable," she said. "I can't see and I can't hear, so it's not safe for me to go outside on my own. But inside my flat, I can't listen to the radio and I can't see the TV. I struggle to read with magnifiers. I've got no one left to help and support me. I'm lonely and I'm isolated. And I'm scared about the future."

Mary is one of the many thousands of vulnerable older woman in England today living out their days with little or no help from social services. Her story epitomises the impetus behind a campaign to overhaul the social care system in the runup to the government's publication of a funding white paper this spring.

Wednesday's interim report by the Commission on Improving Dignity in Care – a body set up by the NHS Confederation, Age UK and the Local Government Association – is a rallying call for change. The culmination of six months of oral and written evidence, the report identifies the underlying causes of the system's persistent shortcomings before a public consultation, launched on 29 February and running to 27 March.

Until she became almost housebound, the war veteran was a linchpin of her community: founding a local branch of the University of the Third Age, setting up a macular disease support group and sitting on a range of committees.

Still mentally sharp, Mary struggles with her double disability. As she is not entitled to benefits, she has to arrange and pay for all her own help. Assessed as needing support, she agreed to pay more than £40 for two hours of support from an agency worker. "But I was told I would have to book and interview them myself," she said. "How do I do that when I'm deaf and blind?"

She tells the story of how a cleaner, chosen by a local support agency, had admitted leaving dirty washing in the sink. "She said I was blind, so it didn't matter if the sink wasn't clean. If I can't trust the agency to choose decent support workers and I can't see or hear to choose them myself, what do I do?

"Of all the times when I need well-funded, good-quality help from the state, it's now. But I spend most of my days entirely alone," she adds.

Mary's situation, bleak as it is, is far from unusual among her demographic. Older women are disproportionately represented in the 2 million people aged over 65 in England today with care-related needs. They are even more over-represented in the nearly 800,000 older people who get no support from public- or private-sector agencies.

The crisis in social care hits women because they tend to outlive men: in 2010, 70% of people in the UK aged over 90 were women. But there are other reasons why older women are disproportionately affected. They are, for example, likely to live more years in poor health and with a disability than men. They are also considerably more likely to live alone in later life: almost 80% of women aged over 85 live alone compared with 43% of men.

These women, like Mary, are less likely to be informally supported by friends and family: fewer than 15% of women over 75 are supported by a spouse – compared with almost one in three men of the same age. Older women are at a higher risk of suffering depression and mental health problems.

Statistics for those receiving care do not differentiate between men and women. But experts say the fact that older women are now "bearing the brunt of the current crisis in social care" is both beyond debate – and of acute concern.

"This generation of women did not benefit from feminism. After a lifetime of caring for other people, thousands of women in their 80s and 90s are being let down," said Michelle Mitchell, director general of Age UK and former chair of the Fawcett Society. "They are isolated in their own homes, without basic support to help with washing, going to the toilet, shopping and cleaning, let alone getting out of the house and having dignified and fulfilling lives."

Spending on older people's care stagnated, and then decreased after 2005. In the past 12 months alone, funding has fallen by £300m (4.5%) in real terms. When increasing need is factored in, the shortfall this year is £500m. A recent study by Age UK, however, estimated that, just to "stop the system getting any worse", a steady increase in funding is required: by 2015, it will cost £9.4bn a year to keep the status quo – £2.1bn more than was spent this year.

The crisis in the social care system was laid bare in November 2011, when an Equality and Human Rights Commission inquiry revealed that basic care for older people in their own homes was so bad that, at times, it breached human rights. The commission highlighted cases of physical abuse, neglect and disregard for privacy and dignity.

But while all old people are at risk, older women are most vulnerable because, as Mitchell says, late old age is "a woman's world".

<strong>Mass protest</strong>

"And a pretty bleak world for a whole generation of women," she added. "This is a story about the bleak reality of old age for women and the women carers – both professional and family – who bear moral witness to a crisis which is failing to look after for some of the most vulnerable people in our society today."

On 6 March, there will be a mass lobby of parliament – a protest urging the government to reform and adequately fund social care that has cross-party support from many MPs. Organised by the Care and Support Alliance, a consortium of more than 50 organisations representing older and disabled people, the protest lobby aims to exploit "a powerful and current window of opportunity to change the way that care is delivered and funded so that it is truly fit for purpose and sustainable for future generations".

"There is a huge public appetite for reform," said Simon Gillespie, chairman of the alliance. "Families will no longer tolerate a social care system which leaves many with no support and others with poor quality services. The public are angry that they can face huge care charges, and end up losing all their savings or being forced to sell their homes."

"It's time to act," he added. "Reform now could build a fair and sustainable care system which delivers dignity, independence and peace of mind for older and disabled people and their families. Failure to act would continue a cycle of cuts, neglect and abuse in social care, at great cost to our economy, public services and society."

For older women who do have families to care for them, the stress of battling with local authorities to maintain care packages and stop support being withdrawn can be considerable.

Annie Turner, 90, has Alzheimer's disease. She sold her house to pay for 24-hour care in a residential care home but, says her daughter Pauline, funds are running low: "So far, mum's care has cost £96,000 and there is not much left from the sale of her house in her savings. It is a constant worry to make sure mum is looked after properly.

"It is bad enough watching your mother disappear into a world of her own – sometimes she does not even remember me – but [my greatest fear is that something happens to me] because I have to make sure my mother gets the best care we can give her: she was a great mum to my sister and me."