A father and daughter are sobbing in the kitchen, exhausted by their attempts to arrange care and support for their much-loved wife and mother. If this sounds like an episode from your favourite soap, it isn’t.
This is real life in 2014, and it’s just one of the heart-breaking testimonies we read when we asked thirty people to keep a detailed diary as they struggled to negotiate a maze of confusing advice and information while arranging care and support for another person or themselves.
Two years ago we investigated the quality of care provided to people in their own homes and in care homes. Now we wanted to look into how easy or difficult that care – and information about it – is to find.
Our extensive research – including survey work and additional interviews with families who had arranged care – has uncovered problems including people being sent from ‘pillar to post’ to get support and information and families in distress and having to complain to get things moving.
You might think that those with the most money (‘self-funders’) would get better advice, but surprisingly the opposite is often true. Some diarists were wrongly told they could not get council support to help them assess their needs. Robert H, trying to get care for his parents in their 90s, wrote that he had to go into battle with the county council ‘to get even the most basic service [an assessment] that they say they offer and which I believe they are obliged by law to deliver.’
Documenting your experience of care
Getting good advice is key to making the best choices. Once Tricia A had the right information after a less than helpful response from a council ‘specialist’, she found a very suitable service that could offer her father respite right on her doorstep. She told us:
‘I had no idea that there was an option like this. This means that I can potentially go for hospital appointments myself… without worry!’
So what will it take for things to change? The Care Bill currently going through Parliament in England promises a better local authority deal on information and advice for everyone including ‘self-funders’. Local authorities will have duties to provide information and advice about care to everyone in their local area who needs it, and that includes family carers.
We think councils must be held to account for their information and advice delivery, so it really meets people’s needs. We’ve fed back our views to the Government. We also know that people ‘cope’ without support for long periods, but do see their GPs. Therefore, GPs need to be better linked to social services so people get referred for good advice before reaching breaking point.