Tony Robinson and The Costs of Caring

Tony Robinson filmed a documentary about caring for his mother, who had Alzheimer's: he generously gave an interview and Q&A session about his caring experiences to Times Online. One of the comments that Robinson makes is that

care workers need better pay, more training and a proper career structure.

In the course of the programme, carers frequently raised the issue of how angry they were about the inadequacy of the Carers' Allowance. Juxtaposed to Robinson's above recommendation for care workers, its seems as if carers get substantially less pay, no training, and that caring destroys their own career structure. One striking example of this was Janice Marrs. Marrs revealed that she had given up a well-paid, senior post to care for her mother. Along with the job and salary, she gave up many of her pension arrangements and other necessities that would have given her security in her own future. She made the cogent point that she is paid just £45 a week to care for her mother for 24-hours a day. "Sometimes I'm up four times in the night - why is it just because she's old and very ill that I'm written off as well?"

Marrs contrasts her payment with that of Foster Carers, who she said receive £250 per week. I take her point as to the difference in treatment, but I'm not sure that the seeming animosity displayed towards the comparatively generous allowances awarded to Foster Carers on the Carers UK forums is appropriate, galling though many of the comparisons must be (particularly that a Foster Carers Allowance is paid per child, but a Carers Allowance is fixed, irrespective of the number of people for whom one cares).

Robinson open the documentary by being frank about his difficulty in visiting his father (now dead) when he was suffering from Alzheimer's Disease. And now his mother is confused and has developed Alzheimer's Disease, he took the decision to place her in a care home several years ago. He is explicit about his own mixed emotions about caring.

I'm angry at the way old people are treated in this country and I feel frustrated that no-one ever talks about it, and maybe I'm guilty, because I'm as much to blame as everyone else - I'm never going to be entirely happy with the decision I made to put my mum in a care home. I'm an only child, so the responsibility was all mine.

Robinson does a good job of interviewing people and families who are struggling with their guilt for putting a loved one in a care home, rather than caring for them at home. Lona has been married to John, 82, for 63 years. John is brain damaged following a fall. Lond reveals her state of mind to Robinson and it echoes the words of so many carers I've spoken with:

You feel so terribly guilty. I married this man for life and I feel that I'm letting him down - life is so unfair. He's been such a good man to all of us.

There is a lot of resentment among carers for the penalties that they face for assuming the caregiver burden. There is a lot of anger about the cost of care homes and whether individuals should be expected to pay for this. A lot of this feeds into the tension between NHS budgets and local authorities and their Social Services budgets.

A lot of political blogs are considering the semantic nuances of rights, entitlements and expectations: semantic nuances and philosophical and political differences that have tremendously different implications for health care costs. We might expect a high degree of nursing and medical care. We may argue that our previous tax contributions have entitled us to this high degree of care. But does any of this actually translate to a right to this care? - You will understand that there was not a lot of discussion about what the practical implications would be of failing to deliver care. There was some to-ing and fro-ing as to whether heroic medical care adds significantly to longevity or quality of life.

There is also a lot of confusion about whether most people have actually paid sufficient tax contributions to cover the cost of care costs of between £600 to £1000 pounds a week for several years. [I'm editing this to include a related discussion by James Bartholomew who discusses the different contributions to the financing of caring. He gives a far neater and more cogent discussion of several provocative points that I managed.]

On a related point, economics commentator Wat Tyler tells us that health care is now the largest global industry, and that it is worth 3 trillion dollars per year, or 7-8% of global GDP. The US currently spends 15% of its GDP on healthcare. Yet, the US does not lead the world on health or longevity measures. Tyler boldly writes:

The really scary thing about healthcare is that, even though it's already the world's largest industry, it's now growing at about twice the rate of world GDP. What that means is that in less than a century it will account for the whole shebang. Which means there will be no cash for anything else...everything we've come to stand for will be entirely squeezed out.

 

I ask you: is that really what we want?

There are many distinctions to be made between medical costs (which are typically at their highest in our last few months of life) and the costs of caring for people who are too ill or disabled to care for themselves. I'm not sure that we have a good understanding of just how much economic growth we would need (back to Friedman and his Moral Consequences of Economic Growth)to be able to provide publicly-funded care for increasing numbers of older people as our population ages. How much do we damage our economic growth if there were substantial numbers of people like Janice Marrs give up their tax-paying status to provide care and who remove their work-experience from their workplace?

There has equally been some horror expressed at the "bed-blocker" labelling of some premature babies. The Royal College of Obstetricians and Gynaecologists argues that the heroic interventions to save babies born under 25 weeks are hampering the treatment of other infants with a better chance of survival and a healthy life. They say that these very premature babies are “blocking” much-needed intensive care cots.

In an echo of the medical costs v. social/care costs of older, ill or disabled people, research claims that babies born at 25 weeks or under cost almost three times as much to educate by the time they reach the age of six as those born at full term — £9,500 a year compared with £3,900.

Professor Sir Alan Craft, president of the Royal College of Paediatrics, is reported to say:

Many paediatricians would be in favour of adopting the Dutch model of no active intervention for these very little babies. The vast majority of children born at this gestation who do survive have significant disabilities. There is a lifetime cost and that needs to be taken into the equation when society tries to decide whether it wants to intervene.

Although these reports have encouraged the predictable comments about rationing, and what price we can put on human life, we have still not had a good public discussion about quality of life and whether spending limitations are a reality. A while ago, some of the Albert Ellis Institute trustees fell out with Albert Ellis because of their concern that Ellis' medical benefits were interfering with the financial well-being of the institute. Ellis' medical care payments are more than 500,000 dollars per year. Which is my rather incoherent way of explaining that even for somebody like Albert Ellis, it is hard to comprehend the level of financial provision or tax payment that would be necessary to justify the statement that one is financially entitled to 500,000 dollars of medical costs per year. I mention this because people frequently say, "X paid taxes for years. X is entitled". I agree that X was led to expect cradle-to-grave care. However, medical technology and expectations around the profundity and length of end-of-life care have changed so much that it seems as if our expectations are a poor guide to what we are entitled to on the basis of our own history of tax contributions.

Coming to the end of this badly structured post. None of my discussion about the economics of medical care or the costs of caring relates to the moral argument for funding care. It's just that any discussion of the costs of caring tends to collapse under accusations of rationing. We very rarely have a public discussion about whether there is a moral argument for care and whether it is integral to our understanding of civilization.

Tony Robinson argues:

Sorting out about how we care for the elderly should be a national priority, and it isn't. We live in a world where we shout from the rooftops about the state of school dinners and fox hunting. We've spent billions invading foreign countries. It's unforgivable for us to systematically ignore our old people any longer.

It is long past the time when we can afford to ignore the discussion about the baseline level of medical and social care that we expect to be provided to elderly, ill or disabled people. Or continue to fail to have the discussion about how we pay for that care. As the care home manager Margaret Mitchell points out in Robinson's documentary, no-one is exempt from the issues raised in the Channel 4 film.

It's the end of your life. It's going to happen to all of us.

Copyright 2006, Tony Plant Happystance Project