Infected Blood Inquiry report published

  • Latest news

Recommendations include: GPs to arrange hepatitis C tests for blood recipients, better records systems interoperability and communication with patients.

The report covers six volumes and was published on 20 May 2024, with the Chair, Sir Brian Langstaff, recommending that:

  • GPs be required to ask whether new patients have ever had a blood transfusion and to arrange testing for Hepatitis C (see p267).
  • Patient voice be improved/ increased by requiring that it be considered in clinical audit as a matter of routine include measures of patient satisfaction or concern, and these should be reported to the board of the body concerned (see p275).

The report also makes recommendations around record management in light of evidence received by the Inquiry.

On p211 of volume 1 there is a reference to care needing to be taken when communicating, with the following statement:

“Communication of a diagnosis or test result should in the first instance be to the patient: the lesson to be learned is that dismay and distress is caused when there is communication to others before patients themselves are told personally – there is evidence of GPs, receptionists, nurses, and even headteachers and pharmaceutical companies being told in advance of patients themselves.”

On p248 of volume 1 there are concerns about the lack of interoperability of IT systems:

“Professor David Armstrong drew attention in his evidence to problems caused because of a lack of interoperability of the digital systems currently in use in hospitals, both as between many hospitals, and as between hospitals and GPs. There is plainly a danger that the systems to be adopted in England, Scotland, Wales and Northern Ireland may not be capable of interoperability, which could affect patient care given the regular movements of populations within the UK, and the resultant risks of gaps in personal health records (and the consequences of those risks).”

On p267 of volume 1, re: finding the undiagnosed:

“When doctors become aware that patients received a blood transfusion prior to 1996 they should immediately be offered a test for Hepatitis C (if they have not already had one). There may be limited opportunities in the usual interactions between patients and their GPs for it to be found out in normal practice that a given patient had ever had a transfusion in the past, if it is not already known. However, the opportunity arises when a new patient is registered at a practice. They should then be asked, as a matter of routine, if they had a transfusion before 1996 and, if they say they have, should be offered the opportunity of a precautionary blood test. There need be no alarm for the patient about this: rather, the offer should instil confidence that their safety is being protected by the doctor, and a substantial majority of previously untested patients may expect the reassurance of a negative test.”

On p275 of volume 1, re: patient voice, the report recommends:

“a) That the patient voice be enabled and empowered by the following measures:

  1. clinical audit should as a matter of routine include measures of patient satisfaction or concern, and these should be reported to the board of the body concerned. Success in this will be measured by comparing the measure of satisfaction from one year to the next, such that the reports to the board concerned demonstrate a trend of improvement by comparing this year’s outcomes with the similar outcomes from at least the two previous years.
  2. that the following charities receive funding specifically for patient advocacy: the UK Haemophilia Society; the Hepatitis C Trust; Haemophilia Scotland; the Scottish Infected Blood Forum; Haemophilia Wales; Haemophilia Northern Ireland; and the UK Thalassaemia Society. (iii) that favourable consideration be given to other charities and organisations supporting people infected and affected that were granted core participant status (as listed on the Inquiry website) to continue to provide support for at least the next 18 months. Further support should be reviewed at that stage with a view to it continuing as appropriate.
  1. particular consideration be given, together with the UK Thalassaemia Society and the Sickle Cell Society, to how the needs of patients with thalassaemia or sickle cell disease can best holistically be addressed.
  2. steps be taken to give greater prominence to the online Yellow Card system to those receiving drugs or biological products, or who are being transfused with blood components.”

P427 of volume 6 looks at death certificates and the recording of contributory factors. There is a reference to the Inner London Coroner and to discussions with a GP regarding the recording of HIV:

“In 2004, the Office for National Statistics wrote to Her Majesty’s (“HM”) Coroner for Inner London North who had asked about the recommended practice for completing death certificates. After setting out the legal position, the letter stated: ‘Clinicians have also used box B to provide further details about the cause of death where they wish to preserve patient confidentiality. The practice has been accepted in these circumstances because the alternative may be that information about conditions such as HIV would not be provided at all.’ The letter was copied to EAGA.”