What happens when money for care runs out?

This page covers:
• Help from the local council when the money runs out
• Reasons people worry about money running out
• Jacky’s story of her mum’s move to a more expensive area of England

A common worry for people who pay for their own care is about what will happen if their money runs out. Some people we spoke to had been to their local council for a financial assessment. Although they did not get help from their council with funding to begin with, they were told to come back for an assessment when their money got down to near the financial threshold. For more about this, see What is a financial assessment.

If a council starts to contribute towards the costs of care following a financial assessment, this can be organised in a number of ways. For example, the council can manage the care by appointing a care agency without the need for the person receiving care to handle the money. Alternatively, the person needing care can be given the money by the council so that they can manage and pay their own care workers at home. This is what Janine’s mum had. It’s called a ‘direct payment’.

Ian had blood samples taken as part of a motor neurone disease (MND) study. He isn’t certain how the researchers will use these samples to meet their research aims but feels okay about this.

Age at interview 54

Gender Male

Age at diagnosis 51

View profile

Probably a little more vague on the blood samples, because I think they’re still struggling to understand how they’re going to use them. But yeah, very open about the fact, You will be part of a blood bank and we may use them, we may actually share them with other people. Do you have any problem with that No, I don’t, you know. It may not be so accurate on, this blood test will do this and this blood test will do tha but as they went along, they, if they took four, five, six phials of blood they would sort of tell me roughly why they were going to use them.

Embed Print Transcript

Councils have an upper limit on the weekly amount they will pay for a care home. This is enough to cover the fees of some care homes but not others. Some people were told that they would have to top up the fees if their care home was more expensive than the local council limit. This payment is known as a ‘third party top up’ and must be paid by someone other than the care home resident, for example, their partner or family.

Some families did not feel that it was affordable for them to pay top up fees. This led to worries about whether their loved one might have to move to a different care home or have a different care team coming to their home.

Compared to the awful paperwork for brain donation, Roland found the information leaflet about a biomarker study easy to understand.

Age at interview 61

Gender Male

Age at diagnosis 50

View profile

I have donated my brain to a brain bank in [county]. That’s- was surprisingly quite difficult to manage. Apparently, it is useful, or will be useful, for my brain to be donated, but the – just to be a bit negative – the paperwork involved was awful. And it was written in, well, by – let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and
And that contrasts with your experience of the [biomarker study] study?

Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make life easy for people.

Embed Print Transcript

People told us that care home managers also seemed worried about what happens when the money runs out. When choosing a care home, some people were asked to prove that they had enough money to pay for their care for a year or two.

People moving to a care home in another region can find that the fees vary in different parts of the country. Jacky told us about her mum’s move to the south of England and what happened when her money began to run out.

Jacky’s parents lived in a care home in the north of England and after her father died, Jacky wanted to move her mum to be near her in the south of England. She got advice from Age UK about the move and was careful to choose a care home that was not too expensive.

When trying to find out about re-joining a twins study, Jade recognised the logo on the study team’s website. She was able to easily contact the research team and they responded quickly to her request.

Age at interview 25

Gender Female

View profile

Like as soon as I found the website more recently, I recognised it and that’s how I knew it was the same thing. I mean that probably seems obvious to you, but I didn’t know much about twins studies or how many there were. I don’t think there’s actually that many big ones. But yeah that’s how I kind of knew it was the same thing. I just remember these glaringly orange kind of t-shirts I think it was, something like that.

And you’ve said you’re interested in re-enrolling. Can you tell me about that decision and how you’re approaching it at the moment?

Hm. So I emailed [twins study] and I said, asked-, I basically asked them for the data they had on us. So I asked them when we were enrolled and why we stopped doing it, and whether we could actually have access to the data. And they responded really quickly, and they said that we stopped because we didn’t want to take part. We did it for about 12 years. And they couldn’t give me the data because of the way it had been inputted, it wouldn’t actually be meaningful cos it wasn’t as if it was a paper survey with the answers written on, it had all been converted into numerical values that would have no meaning to me now. However, the research team sent me a link to the questionnaires that participants completed over the years which was interesting. But they were quite open about the idea of us re-joining it.

Embed Print Transcript

Jacky talked to the care home managers about her mum’s financial position to make sure she would be able to stay after the local council adult social care department started to contribute towards her care.

Jacky said that a top up would not be affordable and she knew that the local council adult social care department must offer a place that would meet her mum’s physical, emotional and social needs.

Jenny, a senior researcher, talks about the difference between a prospective and retrospective cohort study.

Gender Female

View profile

Yes there are-, cohort studies can be prospective or retrospective generally and a prospective study means that you recruit a group of people who consent to be in the study and you follow that group up over time you collect data throughout the follow up generally, I mean sometimes you’ll just collect data at baseline and then follow them up, found out what their outcomes are longer term but you may want to do annual follow ups where you give people questionnaires to find out about their lifestyles, to find out about their smoking habits whether they’ve developed other illnesses, take some measurements, potentially find out their weight and height so you can get their BMI, find out if they smoke, find out if they’ve got another disease which may affect your outcome. A retrospective cohorts study is the other possibility and that’s using generally a dataset that already exists so you already have all the data that you need and you don’t need that long term follow up because it may be hospital records, it may be GP records and you can look at similarly a group of participants, for example, a group of people with and without diabetes and do some of them go on to develop more complicated health problems, but you’ve got all that in the records already. So, you’re doing it retrospectively, so you don’t have to follow them up for 20 years to find out what happens.

Embed Print Transcript

Jacky and other people’s stories show that there can be some difficult negotiations about paying for care as money is running out. Some people told us they wanted to avoid the worry and so decided take financial advice from a specialist later life adviser about buying an immediate needs annuity which would pay for care for the rest of their life. For more information, see the summary What is an Immediate Needs Annuity?