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Can you navigate the care maze?

Man standing outside a large maze

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?

Jamilah says:
29 September 2014

My parents came to live with me without warning because my father after working heroically for many years could no longer manage to care for my mother.

I experienced a problem in actually getting the care Social Services had assessed that my mother in her late 80s needed. The Council had transferred most of its care provision in a very rural area to agencies, which said they couldn’t provide the necessary care.

Not only that, my mother reached the stage where she could no longer climb the stairs even with assistance of myself and my father, and I found it impossible to get an occupational therapist assessment to provide aids for her even with intervention by County Councillor, MP, and AM. When my mother had to go into respite care as a result, an occupational therapist attended the very next day and discovered that Social Services had incorrectly stated my mother’s age and muddled her up with myself, therefore the referral had been rejected. She was assessed as needing maximum assistance with moving eg hoists etc.

My father’s health suffered badly and he never recovered. My health was ruined and I have not returned to baseline two and a half years later.

Over thirty years ago my late father a pharmacist went private to get prostrate cancer treated earlier on NHS so extending is life another thirty years .
Now the same is happening to me because of NHS Policy where Surgeons & top Specialists who work in tertiary system have asked for referral knowing LA s are direct GPs to ignore conditions that can’t pick up in 10 min pretending nothing wrong Low Priority when a disability . Admin are referring to the inappropriate Specialists who then record your history saying goodbye so if lucky another 3mth wait on and on and on when hospital appts not transferred on removal..
I have had to change Surgery 5 x in 2 years because way running surgeries dangerous where was before in London and here
.Allowing admin to prescribe & do testing without properly overseeing is not acceptable.If you have chronic conditions they will become acute if not medically monitored .Swimming lessons are not the answer if no specialist overseeing .This is beyond reason!