What rights do people in care have?
More than 80% of local authorities have reduced spending in real terms on social care for older people over the past five years, leading to reports of private companies that deliver care in the community handing back their contracts to local authorities as "undeliverable".
As the Care Quality Commission (CQC) put it in a recent report, "the combination of a growing and ageing population, people with more long-term conditions and a challenging economic climate means greater demand on services and more problems for people in accessing care".
As pressures on providers rise, so they do on their users. Age UK have reported on how "powerless many older people and families feel when they are trying to arrange and manage care".
Part of the problem is that the legal status of care and nursing home residents is a grey area, and relatives and residents have the least power in any disputes. Legal firms have been key in challenging some of these grey areas.
At the most basic level health and social care providers are obliged to ensure that they respect and protect our human rights when they provide health and care services.
Whether they are funded by local authorities or independently, health and social care providers that provide "hands on" medical and personal care - as opposed to those that offer support and encouragement rather than doing tasks for their clients - must be registered with the CQC, who are tasked with checking that they meet these basic standards ( available online).
But in a worrying turn of events, people are reporting [video] being afraid to speak up about issues in case they or their relatives get evicted or barred from care homes.
The CQC can take action against care homes found to be acting like this, but like the sector they are charged with looking after, the CQC are overworked - and as Andrea Sutcliffe, the CQC's Chief Inspector of Adult Social Care, wrote last month:
"...it should not take regulations or action from the regulator... family and friends should not live in fear of being penalised for raising concerns".
What can we do?
Change is needed if people are to gain the control to plan for elderly care and to feel safe and comfortable in their choices.
Some of that starts with us, and a willingness to plan ahead instead of waiting until we are faced with a crisis.
Our expectations need to change. Whatever we are looking at, from at-home preventative care to full residential service, look for compliance, training and safety records, for flexibility and transparency, and to be treated with the dignity of a customer.
Most of all expect service to match requirements: "one size" care does not fit everyone. Care services should help with what life throws at us, instead of penalising us in a crisis. Home care providers should offer emergency call out facilities and a can-do/never-say- no attitude.
When looking at care homes, look for clear, upfront and simple to understand fixed fees. Age UK say some care homes require a "notifiable person" to accept "joint and several liability" to pay all fees claimed by the care home "on demand", with extra fees that can be added "as needed".
Just as important is how we feel about a potential care provider: do we like the ethos of the company? Do they feel trustworthy? Do they listen to clients and their staff, and support them? Are phone calls answered, are they proactive, will the person who needs care like their carer?
Research a care provider every way possible, well in advance: use social media, join forums, read blogs, and check for ratings on sites like homecare.co.uk, talk to other service users, because good care is about being able to develop a long-term relationship with the right provider.
When there are problems
If there are problems, the first port of call should be the service provider themselves. Although the CQC cannot deal with individual cases, they ask to be informed when complaints are made to or about service providers, as this information helps them decide when, where and what to inspect.
If the service provider does not address concerns we can escalate the issue to the local authority, then the regulator, then local government ombudsman, and/or a solicitor. It can be gruelling, and many give up, or are too afraid to raise initial concerns at all.
There are campaign groups that can help provide advice and support for those who are concerned, like Your Voice Matters, who are pushing for changes in the law to prevent neglect and abuse, and calling for independently monitored surveillance in homes.
The Residents and Relatives Association offer advice and a friendly ear when people aren't sure what to do next, and they are a particularly strong resource for those dealing with dementia.