The Cost of Care

Provider costs

Estimates of the costs of health and social care for people with LTNCs and the cost-effectiveness of services provided were included in several studies, but no overall picture emerged. Hoppitt et al’s overview study (2011) is illuminating, although focussed on rarer conditions. This found that the cost of primary, secondary and social care for those with these conditions increased over the study period (2004-2008) over and above the rate of inflation.

Jackson et al (2011a) found that the largest single formal care cost is that of hospital in-patient care, accounting for just under half (46%) of all formal care costs. A third (n= 96; 34%) of respondents had spent time in hospital in the previous year. Under one in five (n=50; 18%) had spent time in residential care in this period and under one in ten (n=19; 7%) had spent time in both settings. Primary care data showed a 60% increase in medication costs and a more than 20% increase in consultation costs over this period, due to the progressive nature of the health conditions. The costs of secondary care were shown to vary according to the specific health condition, with no significant trends discernable over time.

Demand on social care budgets similarly varied according to diagnosis, with people living with different conditions requiring different levels of support, equipment and technology (Hoppitt et al, 2011). Studies revealed how the balance of costs for social care was being shared between the state and the individual for a range of services. Over half of those who received home adaptations (57%) or equipment (55%), for example, had contributed to the cost. Just under a quarter (23%) had contributed financially to technological aids and one third reported paying for other forms of care.

There was also some evidence of cost differentiation between groups or conditions. By far the highest cost burden for inpatient and/or residential care, for example, was generated by those in the youngest (17-29) age group, most with sudden onset conditions. In contrast, the largest numbers of those spending time in in-patient/residential care were those with progressive conditions in the 50-69 age groups (Jackson, 2011a).

For all groups, however, the studies indicate that the responsibility for providing care is increasingly taken by informal carers, as the condition progresses. Jackson et al found that, whereas formal care costs fell with the increased age of the person being cared for and with the duration of the condition, informal care costs continued to rise in both cases. This ‘inverse cost curve' is likely to be steepest for those caring for people with progressive conditions involving both physical and hidden impairments, and for those nearing the end of life. Leigh et al (2011) found that the bulk (70%) of the care costs for those needing palliative care was borne by informal (unpaid) carers. Overall, Jackson et al (2011a) calculated that, for those with multiple caring roles, informal costs were on average 4.5 times higher than the cost of the formal care being received.

Personal costs

The research also highlights the significant personal costs of caring for others. Overview and spotlight studies alike demonstrate that health-related quality of life is worse for people with neurological conditions and their carers than it is for the general adult population (Fitzpatrick et al, 2010; Jackson et al, 2011a; Cook and Atkin 2011; Leigh et al, 2011; Hoppitt et al, 2011). Jackson et al (2011a) found nine in every ten carers reported feeling constantly under strain, with eight out of ten feeling unhappy and depressed.

Jackson et al (2011a) found that two out every five carers had stopped or reduced paid employment or study to take on the caring role. A third indicated that they would want to continue, or increase, their hours of paid work if their role as carer could be taken on by someone else, in the home or other settings. It was not only the limited availability of replacement care options, however, but also the expense of paying for this kind of support that had forced some carers out of employment.Jackson (2011b), for example, calculated that the cost of buying replacement care  could exceed average annual gross earnings by over £8,000 per year (based on £18 per hour, eight hours a day, five days a week for a 48 week year).

Opportunity costs

Fitzpatrick et al (2010) provide evidence that the health and well-being of carers can be worsened by poor quality services. They found that negative experiences with services were associated with poorer health-related quality-of-life scores for both service users and carers. This in turn increased the demands that carers made on health and formal care services. Failure to invest in maintaining the ability of carers to provide informal care is thus likely to have significant cost consequences for formal care providers.

The cost to health and social services of poorly managed and inappropriately delivered services is also demonstrable (Cook and Atkin, 2011; Abbott and Carpenter, 2009). The latter found, for example, that young men with DMD and their families experienced unnecessary hospital appointments and poorly coordinated services. The costs to the health service of these inefficiencies (e.g. for travel costs for multiple outpatient appointments or unnecessary input from professionals) may be considerable. Jackson et al (2011b) also highlight the wider potential costs to the economy from the 'lost working years' of carers who are unable to find adequate support to remain in paid work.  Assuming a wide spread of salaries, and based on annual average gross earnings in the UK of £26,137, they estimate that these lost working years represent potential lost production to the economy of £235,233 per person per year.



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