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Individuals housebound by disability or chronic illness are an underserved population, and this is likely to get worse thanks to the influx of patients with Long Covid. Medical professionals recognise that these patients are falling through the cracks of our care system. One study found that less than 50% of patients bedridden by ME are monitored by a medical practitioner and up to 60% said that they are sometimes too unwell to make medical appointments. In fact, doctors only see a small portion of those whose illness keeps them home. This effect has been dubbed “the illness iceberg” or the “symptom iceberg”.
All of this comes at a very human cost. In addition to troubles brought on by specific symptoms, being housebound can be crushingly lonely and, as researchers were able to verify during the Covid-19 lockdown, associated with poor mental health outcomes. Additionally, disabled housebound people face additional challenges when compared to the experience of the able-bodied during lockdown.
According to the Office of National Statistics, disabled people have higher anxiety, lower life satisfaction, lower happiness, fewer feelings of worth, and are more likely to be the victims of anti-social behaviour than their able-bodied counterparts. Disabled people are 11.5pts more likely to report severe loneliness, and those who suffer from chronic pain have higher increased risk of suicide and suicidal ideation.
Chronic illness can often come with additional work of its own. Research shows that people with chronic conditions must engage in work to manage the symptoms and treatments; to maintain ‘normal’ daily life; and to maintain their familiar identities. The isolation of being housebound can magnify this work; patients may find it difficult to maintain their sense of identity if they become too ill to engage in activities like work and socialisation.
Chronic illness also comes with costs of its own. There are direct costs, including cost of care, transport, adaptive equipment, medication and other services related to the condition as well as the indirect costs which include future lost wages and lowered economic activity. Finally there are the intangible costs, which covers the psychological aspect including pain, suffering, depression, and other mental health outcomes.
This loss of productivity and earning power can have drastic results for quality of life. Camden CVS reports that housebound people are “particularly vulnerable” to food poverty, and disabled people in general are more likely to live in poverty and less likely to own a home. According to Trust for London, 35% of families in London including a disabled person were in poverty in 2019/20, compared to 25% of families that did not include a disabled person. These numbers represent zero meaningful change in this gap over the last decade.
While it is difficult to find exact numbers for the size of the entire housebound population, we can get a sense of the scale of the issue by looking at a single diagnosis. ME/CFS has a prevalence at between .02 and .04 percent of the population, or about 150,000 - 250,000 people in the UK, with 25% of those being severely affected and exclusively house or bedbound. One American study found a 37% decline in household productivity and a 54% reduction in labour force productivity among people with CFS in general, with a total loss of productivity totalling $9.1 billion, which represents about $20,000 per person with CFS or approximately one-half of the household and labour force productivity of the average person with this syndrome.
In addition to the personal costs, there are medical and social costs to these numbers. Cost-of-illness studies estimate that the cost of chronic illness ranges from 0.02% to 6.77% of a country’s GDP. People with long-term conditions, many of whom are housebound, account for only 30% of the population, but 70% of all NHS spending, including 50% of all GP appointments. Family members and other unpaid carers must bridge the gap, leading to decreased working hours, increased stress, reduced educational attainment and other knock-on effects. All of these have economic impacts for society at large.
Helping the housebound population is the right thing to do both ethically and economically. Unfortunately, chronically ill and disabled housebound individuals can have limited energy and assets to explore novel interventions, and those with long-term conditions have often exhausted their possibilities for treatment. Providing a new treatment option that can be used for a variety of conditions could have a huge impact to not only the patient but to the NHS as well as society at large. A small investment could, over time, lead to fewer missed GP appointments, decreased risk of poor mental health outcomes, reduced reliance on carers and services, and other positive benefits. That’s where Headsets for the Housebound comes in.