The experience of older people receiving home care

Around half of the older people, friends and family members who gave evidence to the inquiry expressed real satisfaction with their home care. At the same time the evidence revealed many instances of care that raised real concerns such as:

• Older people not being given adequate support to eat and drink (in particular those with dementia) and an unfounded belief that health and safety restrictions prevent care workers preparing hot meals.
• Neglect due to tasks in the care package not being carried out, often caused by lack of time.
• Financial abuse, for example money being systematically stolen over a period of time.
• Chronic disregard for older people’s privacy and dignity when carrying out intimate tasks.
• Talking over older people (sometimes on mobile phones) or patronising them.
• Little attention to older people's choices about how and when their home care is delivered.
• Risks to personal security, for example when care workers are frequently changed sometimes without warning.
• Some physical abuse, such as rough handling or using unnecessary physical force.
• Pervasive social isolation and loneliness experienced by many older people who lack support to get out and take part in community life.

Many of these incidents amount to human rights breaches. The cumulative impact on older people can be profoundly depressing and stressful: tears, frustration, expressions of a desire to die and feelings of being stripped of self-worth and dignity – much of which was avoidable. Many affronts to dignity stemmed from easily rectifiable issues, such as not covering somebody with a towel while washing them. The underlying causes of these practices are largely due to systemic problems rather than the fault of individual care workers and are caused by a failure to apply a human rights approach to home care provision.

The effects of different commissioning practices for care services

Many of these problems could be resolved if local authorities made more of the opportunities they have to promote and protect older people's human rights in:

• the way home care is commissioned
• the way home care contracts are procured and monitored

It appears that commissioning is not being consistently used to protect human rights effectively. Indeed some commissioning practices make the experiences that older people described more likely to happen. Although practices varied a great deal, very few seemed to be consistently underpinned by local authorities' awareness of their duties under the Human Rights Act, including their positive obligations to promote and protect human rights. Local authorities appear to have a patchy understanding of these obligations, as reflected in their commissioning documents.

We found that:

• Some commissioning was driven by quality, and referred to human rights standards throughout the process, while other practices focused foremost on price. Cost pressures lead to shortened care visits and increase the risks to older people's human rights and to the quality and safety of their care.
• Whilst financial restraint is an inescapable reality, our evidence shows that some local authorities are still successfully finding innovative ways of doing things differently, rather than doing less of the same.
• In some cases, the terms for delivering home care were so tightly defined and inflexible that older people received a 'one size fits all' service that did not take into account their diverse preferences based on their religion, gender, sexual orientation, disability or cultural heritage. A 'time and task' approach which did not reflect people’s wishes or fluctuating needs made some older people feel like 'a task to be undertaken'. Most said they had little or no choice over what support they got or the timing of care visits.
• Monitoring of contracts often focused on checking outputs and processes. Good practice, using a more person-centred approach, looked at quality of outcomes including human rights standards.
• There is a clear need for supportive senior leadership on the central importance of quality, including respect for human rights principles such as dignity and personal autonomy, in the services commissioned.
• Local authorities who use telephone contact lines to decide whether a person needs a community care assessment may be screening out older people from being assessed for care without first understanding their needs.
• Where there is good practice by local authorities who understand their legal obligations under the Human Rights Act, their commissioning approach benefitted from listening to older people.

Other challenges to older people’s human rights

A number of other interlinked factors are contributing to the human rights risks identified in our findings. Our evidence points to:

• Differential treatment related to age. Human rights are universal – they should not be conditional on age or any other status. However there was evidence of ageist attitudes towards older people, and indications that less money is spent on their care compared to other age groups, with care packages unlikely to support activities outside the home. However, age discrimination in services has not yet become unlawful.
• A lack of suitable information on the different processes and options for obtaining care and on the quality and different specialisms of care providers, so as to allow older people to make informed choices. People require more guidance than just being given a list of local care providers.
• Patchy or no advocacy and brokerage support on offer to assist older people interested in self-directed personalised home care.
• The lack of investment in care workers - the low pay and status of care workers - is in sharp contrast with their level of responsibility and the skills they require to provide quality home care. Poor pay and conditions also affect staff retention, causing a high turnover of care workers visiting older people.

How can threats to human rights in home care be brought to light?

Many difficulties older people are experiencing with their home care go undiscovered and unresolved. It was striking how reluctant older people are to make complaints. They did not want to get their care workers in trouble, feared being put into residential care and did not want to ‘make a fuss’. The vast majority want low-level, informal methods of resolving issues without making a formal complaint. Whilst some local authorities and care providers have taken steps to create a regular dialogue between providers and older people, we found that the current ways for older people to raise issues about their home care service are either insufficient or not working effectively for these reasons:

• Many older people are not clear how to make a complaint or how to find out about making one. This is even less clear for self-funders.
• Few older people had taken an active part in arranging their care. Many of those whose care was set up and managed by their local authority felt they had little say, and some were surprised to hear they had any choice at all.
• Older people do not know what standards of home care they should expect when their human rights are respected.
• Too much reliance is placed on self-assessment of quality by care providers and more could be done to allow the unconstrained voices of older people to be heard by local authorities, regulators and providers so that any threats to human rights can be picked up and resolved as early as possible.