Social care is in crisis. With public money in short supply, some of our key care services are already haemorrhaging, and without new investment the prospect of a complete system breakdown looms. The problem is, as one of our politicians famously said: ‘There’s no magic money tree’. If there’s going to be investment, someone has to pay. Is the answer new taxation? Or do we ask those who actually use the services to contribute more themselves?
But we have a question, arising from our interest in dementia. It’s this. Is the current system working so well – has it ever? – that it’s worth propping up? Authoritative published research shows that the majority of people with dementia feel socially isolated, and the majority of their carers say they’ve had insufficient support. Our own experience is consistent with the findings.
So we’ve come up with a different solution. Far from investing more. we’ll be paying less – while dramatically improving the quality of care at the same time. Yes, it’s purely dementia-focused right now. But dementia is probably the biggest drain on the adult social care budget, and the approach we’re proposing could easily be applied in other situations where long-term care is required.
I laid the foundations for The Care Combine while working on a seminar programme with my American marketing guru, Seth Godin. We came to an assignment which looked at the value of ‘free’. Seth’s view is that while ‘free’ can be an effective tool when it creates trial that leads to trust, a free trial never feels the same as using something you paid for. If it’s free, it somehow feels worth less.
And then he posted this question:
‘”Why is it seemingly acceptable to ask lawyers or graphic designers for free advice or work, even though it’s unthinkable to ask a surgeon for free surgery?”
I paused for a moment. Unthinkable? But where I come from surgery’s always free – well, not cosmetic surgery maybe, but anything life-affecting. But then of course, Seth lives in the USA, and I don’t.
And then I think again. Actually, it’s not free. We do pay for surgery in the UK – except it’s through taxation and national insurance, not at the hospital reception desk. And that gets me thinking about a broader question. Can anything really be free? Doesn’t everything have a cost … even if it’s not simply a financial cost? Someone has to pay.
Now I really don’t want to get into political arguments about health reform, but let me float this moral proposition. If a society stops caring about those who lack the basic necessities of life – food, shelter, healthcare – if it allows them just to suffer, maybe die, then it … could do better.
By these measures the UK could certainly do better, but at least on healthcare it passes my test, with the National Health Service’s insistence that treatment should meet the needs of everyone, be free at the point of delivery, and be based on need, not ability to pay. It means that if I fall seriously ill, no matter what my income or savings, I’ll still be treated.
And who pays? We all do, contributing to the health pot as we draw our salary. Some pay more, some less, depending on income. Some people – the ones who are sickest – benefit more than others. That’s the way all insurance works: some win, some lose. But with the NHS, we can all be confident that no matter when or how illness strikes, we’re covered.
Let’s turn to my project, The Care Combine. If you’re a regular here on the website, you’ll know that we deal with dementia. Now, whereas someone with a heart condition or cancer is eligible for free treatment from the NHS, this is not the case for those with dementia – because there is no treatment, not yet anyway. They might be prescribed a pill, but its only effect is possibly to slow down the illness. Possibly. There’s no really convincing evidence that the pills even do that.
So if we can’t cure, at least we try to care. My aim is to improve the quality of life for people with dementia and their carers by opening a network of day activity centres called The Bine. In a way, The Bine will be just like school. All day, every day, the people with dementia will be involved in meaningful, purposeful activities, allowing their carers to pursue their own careers and interests. It’s my contention that this will alleviate the suffering of both patient and carer more surely than any of the current drugs available.
But there’s a catch. Care in the UK doesn’t fall within the health budget; it’s part of the social services budget. And unlike health, it’s not ‘free’. Instead we means-test care. If people have assets above £23,250, then they’re likely to have to pay for their own care. And if they need to go into full-time residential care, the value of their house could be included in the assets calculation. (I say ‘could be’, because it’s complicated. But it’s a big deal: the average house-price in the UK is £235,000.)
Every way you look at it, people with dementia – and their families – lose. For a start, the illness is long-term – many live for 10 years or more with the condition – and there’s no prospect of remission. People with other illnesses might need full-time care for relatively short periods. But with dementia, sooner or later, the patient will need help in every aspect of their lives – eating, dressing, washing, using the bathroom. If they have to pay for residential care, it could cost anything up to £50,000 per year. The emotional impact of dementia is bad enough; but it can wipe you out financially too.
But it’s not their fault. Any more than getting cancer is the patient’s fault. It can happen to anyone – and does, increasingly.
Does it seem fair? Not to me. That’s why I believe that The Care Combine’s services should be available to all, according to their need, and irrespective of their ability to pay. Just like the NHS. And ideally free.
But here comes that question again. Who pays for free? Our Bine Centres will be expensive to run, not because of expensive medicines or equipment, but because we’ll need plenty of manpower.
Don’t think of The Bine as a sort of elderly care home, where people’s basic needs are attended to, but then they spend a good deal of time by themselves. That’s not how we see it at all. The Bine is more like a social club, hosting events and activities that people who don’t have dementia will enjoy too. Sometimes teams of people with dementia and Bine staff will be outside the building, perhaps doing volunteer work together. To make the whole scheme work, safely and successfully, we’ll need more staff than in the traditional residential home or hospital. One support worker for three members is the bare minimum. For some activities we’ll want the ratio to be 1 : 1.
To pay for these support workers, we could, I suppose, just take the normal Robin Hood approach to care – take from the rich to give to the poor. But means-testing to find out just how poor you are is ugly. It can be intrusive and embarrassing, it’s prone to error and manipulation, and the interview and administrative process just add to the costs.
There’s a better way.
Why does The Care Combine need money? To pay for resources. And what resource do we need the most? People – to assist our members with dementia. So let’s forget money for a moment, open our eyes … and that resource is standing right in front of us, in plain view. Almost everyone who lives with dementia at home has a family caregiver, who gives their service free of charge. For many of the carers it’s a full-time job, 24 x 7, without a break. For some, it’s been like this for years already. And it will be for the foreseeable future.
Unless … we offer them a deal. Suppose, we say, we could offer you the whole working-day free for 5 days a week. So you’d be free to go back to work, if that’s what you want, or get on with your own hobbies and interests. While you’re doing that, we’ll take care of your loved one in a place where they’ll be surrounded with people to help them, involved in activities they’ll enjoy. All you need to do is drop them off in the morning, and pick them up in the evening. Would that appeal to you? It would?
OK, so you’re worried about how much it would cost? Well, the price is £400 per week … but, if you give us one day a week to volunteer with us, then it’ll be just £200 a week. Give us two volunteer days a week, and it’s free – you’ve paid for the whole week’s membership for your partner. And you can do it week after week. How does that sound?
I like the tension created by this approach. We verbalise the caregiver’s problem, show empathy, offer a solution – and then let the caregiver make the decision. Probably not ‘Shall I do it or not?’, but ‘Shall I pay or take the free option?’ Because we’ve stated the price, a bit higher than childcare, a bit lower than full-time residential care, our potential customers will assign a value to our service: for the average family the fees will sound expensive. But the decision they make will be determined by how they see themselves … ‘People like us would …’. What we’ve given them is a painless, self-administered means test.
Whatever decision they take – to volunteer or to pay (or both) – works for us. If they volunteer, we get the staff we need (and people who already have dementia experience, besides). If they pay, we can afford to hire staff. And I’ve satisfied my concerns. Nobody should be excluded. Everyone should be able to afford great care.
- List ways in which our proposal would be likely to reduce the costs of dementia care to the State, or increase its tax revenues.
- Apart from dementia, in which other areas of long-term care might the Bine methodology be useful?
- We'll need more trained volunteer helpers at the Bine, as well as family carers. Which groups of people do you think we should approach?
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