The Care We Want?

The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of the University of Birmingham

“While medical care provided by the NHS is free at the point of use, a great deal of social care is paid for privately. It is expensive, and some people who require residential care find they have to sell their own homes to pay for it.”

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Britain, like much of the Western world, is an ageing society. About one in five of the population of the UK is aged 65 or over. While the fact that people now expect to live longer than ever before is to be celebrated, it brings challenges as well as opportunities.

While medical care provided by the NHS is free at the point of use, a great deal of social care is paid for privately. It is expensive, and some people who require residential care find they have to sell their own homes to pay for it. It is hard to say just how many people pay for their own care as many of those who do so contract directly with a private care agency to provide either care at home or in a residential setting. The most common forms of help include dressing, personal care, meals and medication. As well as, or instead of this, a great deal of help is given informally and for free by family members, friends and neighbours, and many of these care-givers are themselves older people.

In order to understand this growing trend, researchers from the University of Brighton (lead site), the University of Birmingham and the University of Lincoln have tried to capture for the first time the voices of older people who pay for their own care and those of their families and local care organisations. Approximately 75 older people, and approximately 50 family members and 50 providers of professional care have been interviewed. The project is due to conclude in the summer of 2020.

Key to our work has been the help of over 30 ‘co-researchers’, each of whom is an older person recruited locally and with direct experience of giving and/or receiving care. Our  ‘co-researchers’ have taken part in the planning of the research at a local level, helped conduct the interviews, assisted in analysing the data, and taken part in dissemination of the results Their help has been invaluable in keeping us grounded in lived experience.

Many older people who pay for their care do so independently, without any contact with the local authority or health services. Often they need to arrange care at short notice and with little awareness of who to ask and what to expect. They and their families can feel overwhelmed by the challenge of having to navigate the complexities of the health and social care system at a time when they are feeling vulnerable.

A key question that has arisen when we think about the experiences of older people who pay for a care service is: ‘Is this really care?’ The quality of help people get is very variable and not always related to how much they pay for it. One of the strongest ‘messages’ we have heard throughout is how important is the relationship between the person who receives care and the person who gives it. Time, continuity, engagement and trust are things that matter as much to older people as the practical necessities. Government funding for social care has declined over many years, and many local authorities are struggling to meet demand. The free market in care encourages a variety of providers, but it can also contribute to high levels of inequality when it comes to accessing the care we want.

Later life should not be a period of decline beyond that imposed by nature. Just as we all give care in one way or another, we all deserve to be cared for when we need it most, whatever our age and whatever our circumstances.

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    1. At 2:09AM on 14 February 2020, wrote

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