Muir Gray: We need to tackle the “fear of finding out”

muir_grayIn the midst of a blizzard of reports about the overuse of general practice it may seem inappropriate to highlight the problem of underuse, but many people are still presenting to general practice too late, or only presenting as an emergency.

Most of us are aware of the challenges that an ageing population—or more specifically the disease burden associated with that ageing population—places on the health and social care services. I’ve long argued that people should not assume that disease is a given as they get older: if they see their advancing years as an opportunity and not a threat, then they can make a plan for how they can live their later years well. For this to happen, people need to take preventive action—building exercise, good diet, better sleep patterns, opportunities for learning, and fulfilling relationships into their lives. They need to be aware of their bodies, picking up on signs and symptoms that could mean that something is going, or is about to go, wrong, and getting prompt help from the NHS. In England, we are still diagnosing around a fifth of cancers in accident and emergency, and this needs to improve. The later people leave it to see a doctor with the symptoms of a long term health condition, the worse their outcomes may be, and potentially, the greater the cost of their treatment and social care. A lot of publicity has been given to the rising demands made of general practitioners, and the overuse of primary care by people who benefit little. But the other side of the coin has received hardly any publicity—the underuse of services by people who would benefit greatly.

In recent years, healthcare services have become more accessible, for example through increased opening hours, and greater use of technology. In London, people can now see a GP in minutes via an app on their smartphones. But increasing access only helps if people use it. A recent report highlighted that about a third of the reasons that people give for avoiding seeing their GP are not about practicalities. They are psychological, or, as the authors put it, a “fear of finding out” or FOFO. These fears can range from a horror of clinical environments or being examined, to worries about social stigma, threats to relationships, and loss of control associated with some conditions and their treatment. Faced with a diagnosis of cancer or dementia, some people still mistakenly believe it’s better not to know. To some readers, the idea of FOFO may seem alien. However, it’s important to remember that in my experience, these kinds of worries can disproportionately affect some of the most vulnerable, and most at risk, in our society, in other words, those who most need our help.

Great progress has been made in the past 50 years, but there is still a huge gap in life expectancy between the wealthiest and the poorest groups in society. We need to take action not only to respond to increasing demand, but we also need to ensure that those people are included who do not initiate contact with health services, although they would gain greatly. Monitoring service use and relating it to the population served, either by primary care or by secondary care, will identify individuals and communities who are not using the service. Practical problems may be one reason, but psychological factors are usually more important—and FOFO is a major factor.

Ultimately, we all need to get to grips with the fear of finding out. Whether we do it by education or predictive analytics, we need to identify the people who are not making appropriate demands on primary care and then finish up in hospital with a problem that could have been prevented.

Muir Gray is a visiting professor at Nuffield Department of Primary Care Health Sciences, Oxford, UK.

Competing interest: I have been involved in Live:Lab, a project set up by the pharmaceutical company, AbbVie, to understand the Fear of Finding Out better.