Our new report ‘The Care Maze’ finds that at a time when families are struggling to adapt to a change in circumstances, the system can be a minefield to navigate.
People needing care and their families need to consider a range of issues beyond deciding what type of care is appropriate and which services are best. They also have to liaise with multiple bodies like GPs, hospitals and social services and find out about benefits and funding options, legal arrangements like power of attorney and support for carers.
Our research found that 40% of those who arranged care for themselves or on behalf of someone else found the experience stressful or distressing. Those who had found it difficult to find all the information and advice they needed were around nine times more likely to describe their experiences negatively.
When care becomes a reality
Only 7% of people said that they first looked for information about care because they were planning for the future with no immediate need. As one of our research participants told us:
‘There comes a day when you’ve got to enter a realm of care that you’ve never contemplated before. All of a sudden it’s a reality and trying to get and understand the information and funding, all the bureaucracy is absolutely horrendous.’
People also told us they had to deal with multiple different professionals and had to repeat information many times with no-one taking responsibility for coordinating their care. Experiences like this are not only detrimental to families but an inefficient way for health and social care systems to operate. One individual told us:
‘I found it difficult to work out who does what, just a single road map of these people do this and these people do that. You never quite know who you’re talking to and they do tend to pass you around each other.’
The Care Act 2014
The social care system is going through a period of significant change with the recent passing of the Care Act 2014. We welcome many of the provisions in the Act, including strengthened duties for local authorities to provide better information and advice about care to everyone in their area, including people who pay for their own care. But we think more could be done.
We believe everyone should have access to a ‘care consultation’, which would be arranged by their local council but could be conducted by independent organisations, e.g. local Age UK staff.
There should be better links between GPs and social services to ensure that people are referred to appropriate information and advice at an earlier stage. And there should be stronger accountability for local authorities in carrying out their information and advice responsibilities.
Have you had experience of arranging care for yourself or on behalf of someone else? What do you think can be done to make the system better?
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