The graph below shows the number of cancer family history referrals received by the West Midlands Clinical Genetics Service for the past 10 years. Referrals are received from both GPs and hospital clinicians, and the majority of patients are referred because of a family history of breast and/or ovarian, or colorectal cancers. The graph shows a clear increase in the number of referrals, and hence demand. A similar increase in demand has also been experienced in surveillance units, family history clinics and other hospital services in the West Midlands region, where patients can also also referred for management. The true demand may be higher than these figures suggest as many patients can be referred to a variety of hospital specialists, and the numbers of such referrals are not known.

Why the demand for services? The identification of cancer-predisposing genes over the past decade, and media interest in the area, has fueled demand for cancer genetic services. A lack of easily interpreted and widely available referral guidelines also contributed to this increase in the number of referrals. It was not always clear to the referring doctor which family histories might be significant, and what services were available to assess their patients' risks.

Not all referrals are necessary

As a result, many patients were being referred for surveillance and genetic counselling who were at no increased risk of developing cancer. Many patients may have been entered onto surveillance programmes that are unnecessary.

The consequences of inappropriate referral

Outpatient appointments and surveillance may cause anxiety in patients. If a referral is not necessary because a patient is not at significantly increased risk, then the anxiety generated through the referral process is inappropriate.

The financial cost consequences of inappropriate surveillance and outpatient appointments should also be considered. One patient who is entered onto an inappropriate surveillance programme may trigger referral and surveillance for several family members, that may also be inappropriate. The allocation of an unnecessary appointment means that another patient at increased risk may remain on a waiting list for longer.

As demand for services continued to rise it became clear that many patients could have avoided unnecessary outpatient appointments, and resources could be utilised more appropriately if patients' cancer risk could be assessed before a referral was initiated.