Older people receiving social care and their family carers set out the problems they face and how to fund a better system

They say they would be prepared to pay more for care if they can afford it, get better care in return and everyone contributes

General taxation and a 5% levy on estates after death to go into a ring-fenced pot among the ideas they say they prefer

A new report by Age UK, "Why call it care when no-one cares?", summarises the results of a series of listening events the Charity has held with older people who are receiving care and their family carers over the last two months. One hundred and twenty seven people participated in thirteen sessions in total, which took place in the North, Midlands and South of England, in urban and rural places, and in more affluent and poorer areas.

At each event the local MP joined for the final hour to hear directly from their constituents. They included the Prime Minister, the Secretary of State for Health and Care, and the Shadow Secretaries of State for Health and Social Care and of Housing, Communities and Local Government.

The listening events, which were kindly hosted by local Age UKs, had two parts: in the first older people and their family carers talked about their personal experiences of care, highlighted the problems they faced and what would make life better; and in the second they discussed various funding proposals and what they would mean for them and their families.

Most of the older people who took part and their family carers were receiving care at home, but some were receiving care in a care home or supporting a loved one there.

Age UK organised these listening events to help policymakers understand the real-life issues facing older people in need of care and their family carers in their constituencies, and to provide an opportunity to discuss potential solutions. The Charity also hopes and intends 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'.

Although the listening events took place in very different places the same issues came up over and over again, showing that the problems facing adult social care are national.

The top five problems that older people and their family carers talked about at every listening event were:

Too many professional carers are in a rush and there's no continuity
Many participants complained about rushed, 'tick-box' home care visits from paid carers and a lack of continuity, so they never got the chance to build a relationship or even establish proper communication. Older people weren't receiving 'person centred care'; indeed what they got was sometimes not 'care' at all. The system was generally blamed for this rather than the paid carers themselves.

Care often it isn't very good
The majority of the people we spoke to highlighted the poor quality of care that they or their family members sometimes or always received. One participant had resorted to putting signs around her husband's care home room to remind the staff to do basic things like leave him a drink within reach. Many people felt that if they had more money they could have bought a better standard of care.

Social care is very expensive and often not good value for money
The high cost of social care is crippling families and older people financially. Those who had to pay for their care were shocked by the prices; for example, £25 an hour for home care in one constituency outside London. When people were entitled to free care and took it up they often found it wasn't a decent standard so they had to 'top it up'. Those who were not entitled to support felt they were signing 'an open cheque'.

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 it had to be voluntary and that people who need care should also receive support from the council or NHS. Those caring for parents or partners with dementia in particular often said they felt out of their depth and 'dumped on', struggling without enough basic help or specialist dementia support. One person explained how caring for his wife had led him to have a breakdown because he simply couldn't cope 24/7.

The social care system is dysfunctional and navigating it is a nightmare
Almost everyone had struggled to find out how to arrange care. People were confused about what care is available, who provides it and how it is funded. Many had wrongly assumed care would be provided free by the NHS. There were often delays in receiving information and basic help, and some didn't get it at all. Council delays in assessing older people were a particular bug-bear and we were told of older people with dementia locking themselves out, setting fire to their kitchens, or going days without food while waiting to be assessed.

When it came to possible solutions and ways of funding a better social care system the top five points that older people and their family carers at these listening events made were:

Everyone should contribute in some way
Older people felt they had paid into the system all their lives and the whole population should continue to do so. The social care system should be there for everyone if and when they need it and so everyone has a responsibility to help fund it. Ideas such as a rise in general taxation and 5% off everyone's estates following their death were the most favoured.

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 value for money. If they were going to pay more out they wanted a much better offer in terms of service quality. They were not prepared to pay more simply in order for others to benefit in future. 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 a lack of continuity in staffing also being addressed. Participants 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 individuals to choose to put money aside into a private account of their own. They wanted their children and grandchildren to have a better, less stressful experience of care, if they needed it in old age, than they felt they were having.

They wanted any extra funds that were raised to be ring-fenced for care
Without a ring-fence 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. A number of family carers spoke of their despair at respite care being cut in their areas, leaving them with no hope of a break.

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 and worse, and further away as a result.

Commenting on the report, Age UK's Charity Director Caroline Abrahams said:

'We heard a lot at these events about how frightened many older people are of running out of money to fund their care, of having to sell up during their lifetimes, or of being able to get only inadequate care - and their sadness at the adverse impact on their families of their declining health and rising care needs. In this, the 70th anniversary year of the NHS, it is worth remembering that part of the rationale for the NHS's foundation was to remove the fear of becoming ill from millions of ordinary people. Unfortunately, today it seems we have replaced one kind of fear with another: the fear of developing a social care need in later life. That's a sad indictment of our society and surely something we all have a stake in wanting to change for the better.

'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, the older people did not want to be pitied and their family carers did not want to be 'placed on a pedestal'; instead everyone wanted politicians to act and improve social care services now, as well as providing more financial and practical support for unpaid carers.

'Older people and their families said that they would be prepared to pay more but only if it was affordable and in exchange for better, less rushed care visits, with more continuity of staff, and more support for unpaid carers – in other words a properly functioning system offering reasonable value for money. They felt they had paid into the system and it should be there for them, and for everyone else if and when they needed it, so everyone should play a part in funding it, now and into the future.'

'Some commentators seem to think that 'wealth taxes' are too controversial to be broached with the public but the older people and their families who took part in these sessions did not reject them out of hand: for example, they were prepared to contemplate a 5% levy on everyone's estates following death and an increase in general taxation, with the money raised being ring-fenced for social care.'

'In effect, these older people and their family carers have thrown down the gauntlet to some of our leading politicians to resolve the terrible problems of the adult social care system, once and for all, and we can only hope that they listen and respond. Certainly, at Age UK we will hold them to account for doing so.'

Case studies

The stories below reflect just some of cases outlined in the release and are representative of calls received. Names, gender and certain details and characteristics have been changed to preserve our callers' confidentiality.

Sarah Bamford:
After breaking her hip Jean moved in with her daughter, Sarah, who became her 24/7 carer. Sarah now feels like she is at breaking point, struggling to juggle her caring responsibilities while raising two children and studying to become a nurse. She feels that both her local authority and the Government should be doing much more to support carers and people receiving care.

Joyce and David Yoxall:
Joyce (73) became her husband's full-time carer after he had suffered a stroke and brain haemorrhage. Dismayed at the poor care he was receiving from the care workers she eventually cancelled these visits. However, she now finds herself as his sole carer and she has lost the 56 days respite care she used to be given each year due to cuts to local authority funding. She doesn't want David to go permanently into a care hom, especially after he broke his hip without staff even noticing the last time he was there but, at this stage, she cannot see how she can go on without more regular respite breaks.

James:
James is a full-time carer for his wife, Patricia, who is living with numerous health problems, including arthritis and dementia. His wife gets very confused and disorientated, and on occasion, can become aggressive. James has been able to get some care support, but getting this has proved challenging - from challenges in securing funding that James felt to be incredibly time-consuming, to acquiring a social care assessment that failed to properly reflect the severity of his situation. James believes that the system was far better 20 years ago, before cuts to local authority funding when his own mother received care during the time she spent living with dementia.