Age UK recently hosted a series of listening events where older people receiving social care and their family carers told leading politicians about the problems they face and how to fund a better system. The charity hopes that the views and experiences of people for whom a better care system cannot come too soon will help to inform the Social Care Green Paper, which the Government has said it will publish ‘by the summer’.
Day-to-day tasks that many of us take for granted— like getting dressed, using the toilet, making a meal, or getting to the shops—can be almost impossible for many older people without help. But increasingly, only those with the very highest level of need are likely to get any help at all from the State and, even then, this can simply mean short visits from over-stretched and under-qualified care workers. Right now, an estimated 1.2 million older people are left to struggle each day without the support they require to carry out these fundamental daily tasks and live decently.
Our latest report, ‘Why call it care when no-one cares?’ has helped to capture the experiences of older people in receipt of care, and their families and informal carers, after we arranged a series of ‘listening events’ with older people and their families in 13 different locations across England.
We spoke to 127 older people and their informal carers in all and we asked them ‘what do you think are the problems with social care, what are the solutions and how should they be funded?’
Their answers—which were sometimes heart breaking, and yet unsurprising—highlight just how bad the situation has become for some older people. There were some horror stories—such as highly vulnerable older people being discharged from hospital in an unplanned way and left to struggle alone, but just as worrying was that almost everyone had experienced some problems in terms of the quality and quantity of the care they received.
When you hear these things so consistently, across very different areas, it is impossible to describe the current care system as anything other than broken. Similar concerns were raised time and time again, including:
- Too many professional carers being in a rush, with little continuity: many participants complained their home care visits from paid carers were often shorter than they were supposed to be, as they hurried from one job to the next. Many older people were being helped by a number of different carers so they never got to know them properly and a lot of time was wasted just explaining what they needed and where everything was. At the worst, care visits were so perfunctory that no real ‘care’ appeared to be provided at all.
- Care often isn’t very good: the majority of people we spoke to highlighted the poor quality of care that they or their family members tended to receive. One woman explained that the quality of care was so bad for her husband that she had resorted to putting signs around his care home room to remind the staff to do basic things like leaving him a drink within reach.
- Social care is very expensive and often not good value for money: those who had to pay for their care were shocked at the high cost—and even those who were entitled to a free care home place often found themselves having to pay ‘top up fees’ to obtain decent quality relatively nearby their local area.
- Many family carers feel abandoned and unsupported by the NHS and social care: the family carers we spoke to wanted to do right by their loved ones, but they all agreed that people who need care should also receive support from the council or NHS. Many felt this was not the case, out of their depth and ‘dumped on’, especially if they were caring for a parent or partner with dementia. One person explained how caring for his wife with dementia had led him to have a breakdown because he simply couldn’t cope 24/7 with very little extra support on offer to him.
- The social care system is dysfunctional and navigating it is a nightmare: Almost everyone had struggled to find out how to arrange care. Council delays in assessing older people were an additional bug-bear. On occasions these waits had resulted in older people with dementia locking themselves out of their homes, setting fire to their kitchens, or going days without food while waiting to be assessed.
The Government’s promised Social Care Green Paper is certainly to be welcomed, as is the recent addition of ‘Social Care’, to what was the ‘Department of Health’. These moves suggest that the Government is finally beginning to take seriously the need to improve social care and put it on a sustainable basis for the future.
However, these listening events have also served to highlight just how badly many older people and their carers are being let down by our social care system at the moment and the need for urgent solutions.
As part of these listening events we asked participants about how a better social care system could be developed and funded. The overall response was:
- Everyone should contribute in some way: older people agreed that the social care system should be there for everyone, if and when they need it. As a result, they suggested that everyone has a responsibility to help fund it. Building on this idea, they suggested a rise in general taxation, plus possibly a 5% levy on everyone’s estates following their death.
- People were only willing to pay more if they got a better service in return: participants felt there were already paying a lot of money into the system and most felt they were not getting good value in return. Whilst people were happy to consider paying more, they insisted on there being a much better offer in terms of service quality. Some participants with assets were keen on a ‘cap’ of some kind, but even they did not generally feel this would be enough on its own to justify them paying more, without issues such as rushed home care visits and the lack of continuity in staffing also being addressed.
Participants also thought it would be good for future generations to be able to ‘pool the risk’ of needing care and were unanimous that any such scheme would have to be compulsory and State backed, rather than relying on people to choose to put money aside into a private account of their own.
- They wanted any extra funds that were raised to be ring-fenced for care: without this there was concern that any extra public money raised for social care could be diverted elsewhere and if it was raised to be shared across the NHS and social care they worried that the NHS would take the lion’s share and social care would lose out.
- They believed we need a new and better contract with family carers in our society: many of the family carers were visibly buckling under the strain, particularly those caring for a loved one with dementia. Older people said they worried about the impact on their relatives of caring for them too. The general view was that we need to be much clearer as a society about what it is ok to expect an adult child or partner to do in terms of personal care for another person and back them up with much more support—not leave them to get on with it as some participants complained happens now.
- Older people and their families desperately wanted security: older people and their families wanted to feel secure financially and confident living in their own homes, without fear that they would have to sell up to pay for care or, in the case of some family carers, face homelessness if they were providing care in their parent’s home and it would have to be sold after their death. Some family carers also worried about using up savings meant for their own retirements to replace some of the income lost due to caring, and those who were paying their own care home costs dreaded running out of money and having to move somewhere cheaper, of lower quality and/or further away as a result.
Some of the stories told at these events were harrowing and the distress of those adult children and family carers who were struggling and often failing to secure really good, consistent care for the older people they loved so much was tangible and moving.
However, these family members did not want simply to be pitied or ‘placed on a pedestal’. Rather, everyone wanted politicians to act and improve social care services now, as well as provide more financial and practical support for unpaid carers.
These older people and their unpaid carers have therefore thrown down the gauntlet to some of our leading politicians to resolve the entrenched problems of the adult social care system, once and for all, and we can only hope that they get the response they deserve. Certainly, at Age UK we will hold our policymakers to account if they fail to act.
Ultimately, the buck stops with central Government and it must recognise the scale of the crisis affecting the NHS and social care and take responsibility for gripping it.
The Government must keep its promise, made in March last year, to ‘put the state-funded social care system on a more secure and sustainable footing’ and follow through on its commitment to publish a Green Paper later this year. Indeed, the Green Paper and the consultation that will follow it will be a great opportunity to think about what kind of a society we want for ourselves, our ageing parents and our children, and we need to ensure that the consultation is meaningful and leads to lasting change.
But it is also vital that funding for social care is increased now, to prevent any further erosion of services—which in many parts of the country are visibly tottering.
Realistically, it will be years before the Social Care Green Paper’s proposals lead to improvements on the ground, so action is needed now to shore up the existing system and to support the providers and front line staff who are doing the best they can for vulnerable older people in incredibly difficult circumstances.
Both now and for the future, the Government needs to make big and bold changes to make a real difference to the lives of older people in social care. Those in need deserve nothing less.
Caroline Abrahams, Age UK’s Charity Director
Conflict of interest: none declared