GP registration service to help find undiagnosed patients with infected blood

Practices are being asked to prepare for changes to the online GP registration service being introduced as part of efforts to identify patients affected by the contaminated blood scandal.

NHS England has announced that from June 1, a new question will appear in the registration service for those patients born before 31 December 1995, which asks whether they had a blood transfusion before 1996.

The paper registration form (PRF1) will also be updated.

New guidance issued by NHS England today tells GP practices that where new patients indicate a history of blood transfusion and infection risk at registration, ‘processes need to be in place to discuss, offer or signpost to hepatitis C testing’ either during their new patient health check consultation or ‘opportunistically’ before then.

The move follows a recommendation made by the Infected Blood Inquiry report (IBI), published a year ago and accepted by NHS England, that new patients registering at a practice should be asked about any blood transfusions prior to 1996.

The IBI, led by Sir Brian Langstaff, found that thousands of patients have ‘died or suffered miserably’ as a result of being treated with infected blood or blood products from the NHS, particularly in the years between 1970 and 1998 – and that many continue to suffer.

According to the report, around 26,800 people were infected with Hepatitis C after a blood transfusion and around 1,250 people, including 380 children, were infected with HIV after being treated for bleeding disorders.  It said more than 3,000 deaths are attributable to ‘infected blood, blood products and tissue’.

The new guidance for GPs and practices reveals the exact question and information presented to relevant patients when they register. Patients are also informed that their answer will be shared with the surgery and may be offered a blood test.

NHS England has warned practices that patient responses using the online GP registration service will not be filed automatically ‘and will need to be reviewed and actioned from the patient registration email, under the section titled ‘Important information’ (highlighted in blue)’.

Although patients won’t be asked whether they have been tested for hepatitis C at registration, the aim is for this question to be added in online and to the PRF1 at some point in 2025/26, though it will be subject to an assessment of the initial changes.

Until then, NHS England has said, practices may need to ask patients who may be at risk of infection if they have been previously tested for hepatitis C during a consultation, or check the patient record.

Patients should be offered information and support and signposted to testing routes, such as the free home self-test. And information for patients about hepatitis C is available on the NHS.UK website, practices have been reminded.

The guidance also said:

• for some new patients, where relevant, ‘it may be clinically appropriate to complete a blood-borne virus screen and test for hepatitis C, hepatitis B and HIV’ too.
• practices are encouraged to undertake further hepatitis C ‘case finding’ using embedded GP IT clinical searches among registered patients ( see box below).

Professor Sir Stephen Powis, NHS national medical director, said he wanted to reiterate their ‘deepest apologies for the role the health service played in the suffering and loss for so many.’

He added that ‘this simple change to the GP registration process for patients is a vital step forward in ensuring that nobody affected by contaminated blood is living undiagnosed and unsupported’.

Health Minister Ashley Dalton said the infected blood scandal ‘is one of the gravest injustices this country has ever seen’ adding that ‘this initiative will see patients asked about their history and given access to the tests they need if they are at risk of hepatitis C, in line with the recommendations of Sir Brian Langstaff’.