On 16 April 2018, the Members of two committees attended a focus group at New Deanery Care Home in Braintree, Essex. They heard from recipients of social care, family, carers, care workers and care home administrators. They heard about issues relating to social care funding from the perspective of both older adults and working age adults.
The Committees were represented by the following Members:
The Committees are extremely grateful to all those who participated and who spoke so honestly about their experiences. The Committee would also like to thank Julia Clinton, CEO of Sonnet Care Homes, for her assistance in organising the visit, as well as staff from the Parliamentary Outreach team.
Difficulties in navigating the system was a strong theme raised by the focus groups. Individuals who had organised care for their loved ones described their experiences in stark terms:
There was no assistance, no guidance about where to go. I just got in my car and went to look.
When my wife was diagnosed with dementia, we expected someone to say, “This is what you do”. It was like having a jigsaw puzzle with no picture on the box. Some kind of route map to tell you what’s available would be helpful.
I went through social services to get help with mum–barrier after barrier—I was shocked at the lack of help. There is no continuity—I was passed from pillar to post. It was very stressful for our family, and I’m in the care sector, I know who to go to
They need to help us how to get through the system. It’s a nightmare. A dark tunnel
When my father-in-law was diagnosed, he was given a pack of lots of organisations to help. But my mother-in-law couldn’t help. It all slipped through the net. You need a kind of buddy, someone to stay around to help.
Care home workers agreed:
One of the biggest issues is lack of knowledge. Some kind of education for families would lessen the impact. People come to us not knowing about anything—they don’t know what they’re looking for, who to speak to
The complexity of assessments and lack of support in dealing with this were also raised, with people pointing out that a lot is online, which may be very difficult for certain groups to access:
Questions on assessment form are so complex and there is nobody to talk to about this. Most guidance and support available online but not everybody can be ‘online’
The system is confusing even if you know the system- all the types of allowances that have to be or can be claimed.
There are lots of applications and a lot is online—what can I claim for? what do I qualify for? There is no one to talk to about this.
Forms are confusing and complex
Simpler language is needed
It was felt that this could lead to people missing out on sources of funding that they might be eligible, simply because they are not aware of its existence.
Some attendees reported that most of the information available was aimed at older people, rather than working age adults
Care home staff also felt that the paperwork involved in the current system was cumbersome:
The amount of paperwork generated by care homes is huge. There must be alternative–a large amount of time spent on paperwork rather than caring.
People suggested that there should be a single place–not online–or a point of contact, like a care navigator–to offer people advice or guidance. GPs should be equipped to signpost people towards these sources of support, as they are often the first point of call when someone begins to develop care needs.
One attendee, however, argued that the system itself should be simplified:
Why not just make system simpler, rather than having people to tell you how to navigate it?
Many of the relatives who attended the focus group had experience of caring for their loved ones at home before they became care home residents, and described the importance of respite care:
I did get some help from social services who sent two people once a week for a few hours, so I could have a break–I used to go and play golf. Then, due to sickness, they didn’t come for three weeks and I couldn’t cope. Social services were brilliant and rung around and found a bed within in a day. They offered a week’s respite, then another and then a permanent home. I have a lot of respect for them, I think they saved my life. When you get through to them finally, they are very helpful indeed.
One attendee described great difficulties in getting respite care, even to give teenage children time off from caring responsibilities once a week for their working-age adult parent. Not providing such care can be a false economy as without it carers cannot cope and people need to go into residential care sooner:
You may just need someone to keep a loved one company or take them for coffee but this isn’t funded and very expensive. Give teenage children some time off once a week but this is very limited. If council wants to limit full time care costs then more of these facilities need to be provided.
Care home staff also report immense strain on families caring for loved ones at home:
By the time people come to us, they are exhausted. You get very sick carers in the community. That is much more of a problem. They are older–you will have an 85-year-old woman caring for her husband. It’s a tick box for social services—she lives with husband therefore needs less care. It’s just the pressure they are under.
One attendee pointed out the hidden cost to the economy of people caring for loved ones themselves:
If you were able to add up the lost revenue from carers, you would find the bill reduces significantly.
Participants described issues with the quality of social care they and their relatives received. One participant felt that the local authority funded care homes were poor quality and so chose to fund his grandmother’s care himself, despite having other financial commitments:
Nan has no money so we had to fund her. I have two kids, a house etc. Everyone asks why we didn’t chose a social services place. It’s because they are so awful–just people waiting to die. The buildings are so old—up and down–she wouldn’t have coped. I’m getting stung for my nan. We’re [younger people] getting it down the line as well.
Another participant observed that
The cost of care home does not always reflect the quality. We visited 17–the difference between them didn’t equate to cost.
Care workers felt that better use of technology could improve care:
We need to find ways of using assistive technology to help. There aren’t going to be enough people working in care in the future. But there is nothing on the market that eliminates need to write stuff down. It’s a big logistical nightmare to go from paper to electronic.
However, one family member observed that even low tech equipment is difficult to obtain:
The social workers couldn’t get the things we needed. We struggled for two weeks to get a toilet raiser, despite it being flagged up as an urgent need–it’s a basic piece of kit.
Relatives of working age adults with social care needs argued that these needs are very different from older people’s needs, including physical activity and stimulation, but that stimulating social activities were often not funded by local authorities. One participant described being offered one day a week subsidised daycare, but having to find funds herself for a second day, which at £95 was very expensive. Others agreed that they had to limit use of such facilities due to affordability.
Care staff told us that they are not able to provide full, stimulating care for working age adults who need residential care, and fees paid by local authorities have become unsustainably low, as there have been no fee increases for four years.
Participants talked compellingly about their experiences negotiating continuing healthcare funding:
A gulf exists between what’s NHS and what’s not–the untold riches of CHC versus means tested social care. I would rather we were honest and say, “There’s not enough money”. My wife was finally granted CHC funding in the last two weeks of life when she was completely bedridden and unable to do anything. It’s partly that dementia is such an enormous social problem that there is simply not enough funding to treat it as a disease. If it were cancer, there would be no question about the funding for it.
They described long delays for CHC funding appeals, and one participant argued that:
There is an artificial distinction between health and social care—if the total budget was used to fund the total spectrum of care—if we had care in a seamless spectrum—it wouldn’t matter. We should abolish the artificial distinction and chasm in approaches to funding.
One participant argued that there was poor integration between the NHS and social care, and also within the NHS itself:
The NHS and local government do not work together well. This needs addressing. The NHS is structured in a way where you have so many divisions.
Participants expressed a range of views about paying for care. Anger and disappointment at having to sell their homes and not have a legacy to leave future generations were a common theme:
My parents helped me and I would like to help my children. When my husband died, my income dropped and I could no longer take care of myself after about 6 months. I had to sell my house to get in here and I wanted to leave it to my children. I was concerned about what would happen if I couldn’t afford care anymore. But then I found out about threshold and I was told I wouldn’t be turned out [of the care home]. My granddaughters are going to university. This is an ongoing concern. I read that by 2020 people would be able to keep their property but my property is gone.
I am angry that after [my husband] died I had to sell my house to come here. I was hoping that I could leave something to my children, as my parents did for me. There should be a blanket of help and funding across the country–apparently, it’s different from one county to another. I wonder whether councils spend their money wisely. What about the foreign aid budget, that could be cut? This situation has been coming on for 10 years or more.
It’s not fair that we have to sell our properties to fund ourselves to be taken care of.
I speak as a carer and a care provider. My father had a stroke. My parents worked all their lives, did everything right for years. Now he is frightened. What’s going to happen? Will he have to sell his home? It feels like you’re penalised
I have three children in 30s. Their incentive to purchase a house has been demoralised by seeing their grandparents having to sell their house to pay for care. I don’t know how to advise them.
My parents had to pay to top-up my grandmother’s care. That distressed her and she was unable to leave anything to her children
Some people felt that they would prefer to pay increased taxes to fund social care:
I would prefer to pay the extra tax now so it’s already covered. I would prefer for it to come out of NI, and you would have it for yourself to fall back in. Now, my kids are losing out. I would prefer to pay extra, knowing you actually get the service.
I agree. It’s like the pension. I should have been paying in ages ago.
Compulsory contribution into something might work. But I think people will be sceptical about throwing money into the pit as it’s difficult to challenge the NHS. Radical reform of the system is needed …. People would be willing to pay if the money was hypothecated to care they are going to get. If someone told me I had to pay an extra penny on income tax for the NHS, I wouldn’t like it, but I would like hypothecated social insurance.
Some people argued that a cap on care costs would be an improvement on the current situation, but pointed out that the cap would have to be very high for people not to lose their home. One participant suggested that equity release schemes could be used to fund people’s costs up to the level of a cap, allowing people to stay in their own homes. Participants questioned the current threshold level of £23,250, and felt it should be raised, given how long ago it was set, and how low it was.
Other funding options were also discussed:
I don’t think retired people should pay as they have paid throughout their lives. But, if they are very well-off, then yes.
If you have assets, you are taxed. People are retiring later so there is still a significant base of tax payers. People would contribute more if they felt it wasn’t being wasted. Other countries have found a way to do it without taxation and they have done it using the private sector.
With an insurance system, people know that what they paid for is what they get. Nobody objects if they know what they’re going to get.
When you’re young, you don’t think about the future. If something was in place that made us pay and paying it was just a given, it would be better. Maybe start at the age of 40. People are having families later, their children are going to have quite elderly parents.
Finally, one participant argued that self funders subsidised users of social care being funded by the local authority:
If you’re self-funding and live in the same home as people with dementia paid for by social services, you are subsidising them.
Published: 27 June 2018